A New Deal for Carers – Your Voice Counts
Merton Carers Partnership*
Carers Services Report
based on:
Carers Needs Survey October 2007 &
Carers Conference 12 November 2007
*The Merton Carers Partnership is made up of the London Borough of Merton, Sutton
and Merton PCT, South West London and St Georges Mental Health Trust, Carers Support
Merton, Age Concern Merton, Imagine, Merton Mencap, Merton Mind, Merton & Sutton
Crossroads and Rethink.
Page 1 of 74
Section One - Carers’ Needs Survey October 2007
Introduction ......................................................................................................................4
Caring for older People ...................................................................................................4
Caring for adults ..............................................................................................................5
Caring for children...........................................................................................................5
Ethnicity of carers ...........................................................................................................5
What services do carers already receive? ....................................................................5
Weekly respite/ breaks ...................................................................................................6
Advice and information ...................................................................................................6
Support to continue to work, education or training .........................................................6
Services that help carers continue with a hobby or interest ...........................................6
Services such as befriending, buddying etc ...................................................................6
Carers events, activities, clubs run by agencies in the borough that they attend ...........7
Services carers want .......................................................................................................7
Respite ...........................................................................................................................7
Advice and information ...................................................................................................8
Activity clubs and support groups...................................................................................8
Support to continue working, education and training ......................................................9
Help around the house ...................................................................................................9
Access to a social worker or other professional ...........................................................10
Transport ......................................................................................................................10
Help over financial issues ............................................................................................10
Key issues identified in the survey ..............................................................................11
Social isolation and loneliness .....................................................................................11
Mental health................................................................................................................12
Aspergers/ Autism ........................................................................................................12
Caring for children ........................................................................................................12
Older carers .................................................................................................................13
Carers assessments ......................................................................................................13
Direct payments for the carer .......................................................................................13
Direct payments for person cared for ..........................................................................14
Summary of key issues .................................................................................................14
Appendix 1 - Carers Needs Survey ..............................................................................15
Appendix 2 – Pie Charts ................................................................................................20
Appendix 3 – List of Services .......................................................................................22
Appendix 4 – What Carers Want...................................................................................23
Appendix 5 – Problems and Additional Comments ....................................................37
Page 2 of 74
Section Two - Carers Workshop Conference 12 November 2007
Welcome .........................................................................................................................50
Presentations from carers ............................................................................................50
Comments: ...................................................................................................................50
Presentation on ‘Carers Needs Survey – A New Deal for Carers’ .............................50
The Results ..................................................................................................................50
Comments ....................................................................................................................51
Workshops, the next steps ...........................................................................................52
Group One – discussion notes. ....................................................................................52
Respite care ...........................................................................................................52
Information and BAME ...........................................................................................53
Employment and training........................................................................................54
Group Two – discussion notes .....................................................................................55
Respite care ...........................................................................................................55
Information and advice ...........................................................................................56
Employment and training........................................................................................56
Other matters ...............................................................................................................56
Report back from workshops .......................................................................................56
Group One – Summary ................................................................................................57
Employment ...........................................................................................................57
Respite ...................................................................................................................57
Information and BAME ...........................................................................................57
Group Two- Summary ..................................................................................................57
Respite ...................................................................................................................57
Information and advice ...........................................................................................57
Employment ...........................................................................................................58
Training ..................................................................................................................58
Other matters ...............................................................................................................58
Additional comments: ...................................................................................................58
Appendix 1 - Older People ............................................................................................59
Appendix 2 - People with Learning Disabilities ..........................................................61
Appendix 3 – People with Physical Disabilities and Sensory Impairments .............63
Appendix 4 - Children with Disabilities ........................................................................65
Appendix 5 - People with Substance Misuse concerns .............................................68
Appendix 6 - People with Mental Health concerns .....................................................69
Appendix 7 - Young Carers ...........................................................................................72
Appendix 8 - Former Carers..........................................................................................73
Page 3 of 74
Section One - Carers’ Needs Survey October 2007
“Being the carer of my father in law is a real challenge. It is a very
exhausting job; sometimes I only get 2hrs sleep per night attending to
him. I have a developed acute back pain myself because of physical
effort. Also I am worried about my health and pension since I had to
quit my job to take care of him in full time hours.”
Introduction
The Merton Carers Partnership (MCP) aims to develop the services which carers need,
including information and advice, support, respite and respite activities.
MCP is a partnership including the London Borough of Merton (LBM), carers, and voluntary
agencies that provide services for carers in Merton. The Carers’ Needs Survey was
undertaken to ensure the right services are developed. A further evaluation and analysis of
young carers needs will be undertaken in order to design services for them specifically.
Approximately 3000 surveys were sent out to carers known by LBM Social Services, and
voluntary agencies in Merton, including Age Concern Merton (ACM), Carers Support Merton
(CSM), Merton & Sutton Crossroads, Merton Mencap and Merton MIND in October 2007.
446 Merton carers responded, providing a 16% response-rate.
Please note that this section of this report and all the information contained in it are
based solely on information provided in the returned surveys (a copy of the blank
survey can be viewed at Appendix 1).
For the purpose of the survey those cared for have been divided into Older People (over 65
yrs), Adults (18-65 yrs) and Children (0–18 yrs) and the respondents who identify as carers
are divided into relationship groups: Husband; Wife; Partner; Daughter; Son; Brother; Sister;
Son/Daughter in Law; Parent; Friend; and Neighbour. Please also see Appendix 2 for fuller
analysis.
Caring for older People
46% of respondents care for people over 65 years.
Respondents are mainly: wives, 32%; husbands, 24%; daughters, 23%; and sons, 9%. It is
notable that 60% of these carers are over 65 yrs themselves, and this figures rises to 91% for
those carers who are over 50 years old.
28% of the older people cared for by respondents above have physical disabilities, 27% have
long term medical issues, 21% have dementia or Alzheimer’s, and 11% have a sensory
disability. Many of them have more than one reason for needing care.
Page 4 of 74
Caring for adults
40% of respondents care for adults between 18 and 65 years.
Respondents caring for these adults are mainly parents, 61%. Again, it is notable that 38% of
respondents caring for adults are over 65 years; rising to 75% over 50 years. 6% of
respondents are under 25 years.
Again, many of the adults cared for have more than one reason for needing care. However,
the predominant reasons are: a learning disability, 27%; long term medical issues, 22%; a
mental health illness, 21%; or a physical disability, 18%.
Caring for children
14% of respondents care for children from 0–18 years.
Respondents caring for children are predominantly parents, 92%. However, it may be worth
noting that 26% of respondents caring for children are over 50 years and 23% are under 25
years, with one young respondent being the brother of the person cared for.
44% of children cared for have an identified learning disability; 18% a long term medical
illness; 12% a physical disability and 11% a mental health illness. As with each group, each
child cared for may have more than one reason for needing care.
Ethnicity of carers


69% of responses are from the white British community
31% of responses are from the Black, Asian and minority Ethnic groups (BAME)
What services do carers already receive?
(See Appendix 3 for full list of services identified by carers)
The survey asked about what services carers receive that:
 gave them a break from their caring role
 provided them with information and advice
 helped them continue to go to work/education or training
 helped them continue with a hobby or interest
 helped them to continue their caring role
 and which events, activities, and clubs run by agencies they attend
Page 5 of 74
Weekly respite/ breaks
61% of respondents receive some form of break from their caring role at least once a week,
whilst 29% say they receive no support. However, this support can vary enormously. Whilst
some of those cared for go to day centres for 5 days each week, other respondents may
have a weekly counselling session, or one hour of homecare support.
The range of services is extensive. Those most used by respondents are:




Day services including the Jan Malinowski Centre, Eastways Day Centre, Brightwell
Centre, the Cumberland Day Centre, Age Concern Day Centre, Wimbledon Guild Day
Centre, Woodlands Day Centre, Freshfields, High Path and Singlegate School
Care in the home for a few hours provided by Merton & Sutton Crossroads, Merton
MIND and LBM
Volunteer befriending, and buddy schemes
Clubs and play schemes
Advice and information
52% of respondents acknowledged receiving information and advice from a variety of
agencies. In particular they mentioned Carers Support Merton, Merton & Sutton Crossroads,
LBM Social Services, Kids First, Contact a Family, Merton MIND and Merton Mencap.
Support to continue to work, education or training
15% of respondents had support to continue to go to work, or to continue with their education
or training. Support is received from LBM, Merton & Sutton Crossroads, day centres, Kids
First and Connexions.
Services that help carers continue with a hobby or interest
Only 17% of respondents felt that they were able to continue hobbies.
Support provided by Merton & Sutton Crossroads, Carers Support Merton and Merton MIND
was mentioned, with one respondent using her 3 hours from Merton & Sutton Crossroads on
a Friday evening to go food shopping. Another respondent valued the laptops at home for
adult carers through the Open Learning Centre at Pollards Hill. However, 83% of
respondents do not indicate hobbies or interests, which suggests insufficient time for them.
Services such as befriending, buddying etc
36% of respondents feel they are receiving support to continue in their caring role through
personal care and support from LBM, Merton & Sutton Crossroads, Merton MIND, Kids First
and Carers Support Merton. Others receive support from their families and church groups, as
well as counselling, befriending and advocacy. The groups providing these were unspecified.
One respondent talked about the support he got meeting other carers at a men's group.
Page 6 of 74
Carers events, activities, clubs run by agencies in the borough that they attend
28% of respondents take part in a range of activities, clubs and events in the borough,
ranging from day trips, barbeques at All Saints, massage and reiki sessions with Carers
Support Merton, portage parties and Kids First activities, church groups, support groups and
fitness sessions at the local leisure centres. Lack of time continues to be a theme with
comments such as “it’s difficult for fulltime carers to attend anything individually” and “did do
some from Carers Support Merton but find it too difficult to find time”.
Services carers want
There were several positive responses. The services that are provided are generally felt to
be good and some respondents express fulfillment in their role.
“I do not have a problem caring for my son, it is a pleasure.”
“Find it very rewarding as my son has improved and is more stable.”
“Both the day centre and home care provide an excellent service which enables my
mother to continue to live at home.”
“My partner cared for me when I was down, I will do the same for her just as long as I
can because she is my everything.”
However, 50% of respondents said that there are services they would like more of.
Respite
One of the most notable was the request for more respite, from a couple of hours, through to
a couple of weeks. Respondents expressed their need for a break in many different ways.
A full list is in Appendix 4.
“I care for my wife who has MS. At the moment the only service we use are direct
payments that we use for respite care. In our assessments they recommend respite
for ourselves, so why when we did apply that we were met with so much resistance
and pressurised to reduce it, especially when my wife’s condition is getting worse.”
“I can get regular help from Merton & Sutton Crossroads. However I would like to have
help from time to time. My job is part-time and not regular. I worry about getting a sitter
for each occasion and muddle along.”
“M needs constant care, he's also very difficult to manage. He desperately needs a
holiday and a care support worker is needed to accompany M.”
“I am exhausted and would like the opportunity to share, or at least have occasional
relief from my responsibilities. My ideal would be to have someone befriend him and
keep an eye out while I am away for a weekend.”
Page 7 of 74
“Above all I wish to continue caring for my mother in her own home, her own
environment. I live with my 89 yr old mother who has Alzheimer’s, my father died 2.5
yrs ago and it is very emotional watching your parent deteriorate each day. Without
the help of my grown up children I would not be able to leave the house, so
occasionally friends come to sit. I am very grateful to Cumberland day centre because
it helps me keep my mother at home by providing experienced sitters.”
Extending day centre hours till 6.30pm or 7pm would be helpful for respondents who also
work. Summer holidays are a particular problem for people caring for children. There were
requests for respite at home so that the person cared for is in known surroundings. Also,
there were requests for volunteers to accompany the person cared for on trips out to enable
their main carer to have a break.
Advice and information
There was a sizeable response from respondents who feel they don’t know what services are
‘out there’.
“I haven't been given a lot of advice, support or been made aware of services that are
available within the borough. I find it very difficult trying to fulfill all that I have to in my
life and in the lives of the children.”
“I have only just started to care full time so am unsure about lots of things.”
“I do not receive any volunteer services, it is difficult to know what services are
available, often come across services/benefits by accident.”
Activity clubs and support groups
This was also reflected in requests for more activity sessions and clubs for the person cared
for and coffee mornings or support groups for the carers to have the opportunity to get
together for mutual support.
“I haven't been given a lot of advice, support or been made aware of services that are
available within the borough. I find it very difficult trying to fulfill all that I have to in my
life and in the lives of the children.”
Some of the carers expressed a need to learn the best way of providing care. Developing
both one-to-one support and learning, and group courses would be valued.
“I wash and dress my husband, I would like someone to come and advise me
on what could be done to make my job easier, he has difficulty getting in and
out of the bed and the shower.”
Page 8 of 74
Support to continue working, education and training
As stated earlier, only 15% of respondents had support to continue to go to work, or to
continue with their education or training. 6% stated that they were retired. However, even
taking all respondents over pensionable age out of the equation (which does not necessarily
indicate not wanting to work) it still leaves 42% of respondents who may wish to work, but
choose not to or feel unable to do so.
“As a worker I find that increasingly I am using my annual leave to take my
husband to hospital and doctors’ appointments etc.”
“I do not feel my brother’s care is optional from a medical point of view.
Therefore I am having increased work and picking up the slack from this. I
feel it is frustrating that he is more unwell than perhaps necessary and that it
is assumed I will carry that burden. It has already been detrimental to my
career, exams, friends and I am only 26. I have the rest of my life to live with
this.”
“I'm currently in full time education at university and doing a placement year. I
find it difficult to take care of my mother everyday. Direct payments (carer)
helps my mother 2 hrs per day and other times nobody cares until I return
home in the evening.”
“There is not enough ‘support’ for me to go to work”
A conclusion drawn from responses suggests that flexibility over day centre opening times
and sitting services to meet the needs of both the carer and the person they care for could
impact on the ability of more carers to go out to work.
Help around the house
Some respondents want support with housework, gardening, etc as well as help with
personal care. They want to know who to turn to when things go wrong at home.
“Its just that I am also disabled and have arthritis in both knees and use a cane to
walk, trying to keep the house clean, I had one hour of home help taken away from me
and now am getting older and finding it very hard, need help please.”
“Its hard going, small things etc when shower goes wrong or problems who can you
call?”
“We were in the middle of renovating when my husband had a seizure, the bathroom
is still half finished.”
Page 9 of 74
Access to a social worker or other professional
This was requested many times. Respondents want an identified person who understands
their situation who will provide continuity of support as and when they need it. The
importance of this is recognized for major issues such as the transitional stages when a child
moves away from a parent carer, or when an older carer is no longer able to provide care.
However, it is also important for the day-to-day problems, when outside carers are unable to
come, or when the carer needs one-off support, so that they can attend a family event for
example.
“I would like one point of contact who knows of my 'cared one' and me to whom I could
discuss any aspect of dealing with my 'cared one'. I often feel nobody knows or cares
about me and the pressure of caring. Dealing with sloppy administration and making
sure everything runs smoothly is a full time job (and I already have a full time job). The
council's daily carers don't really 'care' and are so rushed.”
“At the moment I am capable of asking if I need anything, it would be nice if Social
Services kept contact. Someone came 2 years ago when I asked. I was offered
respite care for a few days and someone to come in twice a week to bath my
husband. So far I have not made use of this. I am told that the case is closed after 2
months. Closed? When the condition is permanent.”
Transport
Respondents expressed difficulty in using public transport.
“No free travel why? Carers are undervalued and under paid yet we are 24/7.”
“I have problems taking my mum out on buses, she cannot get into a car as she is in a
wheelchair, and we often cannot get on a bus until the 2nd or 3rd time, sometimes
even the 4th bus because the bus driver has pushchairs on the bus.”
“As with many elderly carers of people with MH problems, I myself am disabled (can’t
drive or walk much) and am struggling financially. I asked for more rides on my taxi
card but had no reply. This would help me in my caring role, I get exhausted.”
“Dial a ride has proved of little help to me and my daughter so an improved home
transport pick up service would be great.”
Help over financial issues
This is a concern for most respondents, especially when they are unable to work. They are
concerned about how they live now, and in the future. They want to know who they can
speak to and what they are able to claim, e.g. carer’s allowance, direct payments, free
prescriptions, transport costs.
“My caring role is my responsibility therefore I must do my very best for my husband.
But I need a life too and I work part time which has become more difficult each time as
Page 10 of 74
I am also disabled but not as bad as my husband with Parkinson's disease. I need
more help so I can work and pay the bills.”
“At the moment I am struggling financially as I only receive a little allowance and I only
work 2 hrs a day in the evening as a cleaner “
“I get little pension, I also do not get carers allowance as I am getting state retirement
pension. I need more financial help. I must say we are getting a little help from CSM
and LBM - thankyou.”
Key issues identified in the survey
Social isolation and loneliness
The most overwhelming response in this survey is the sense of carers being on their own. A
considerable number of questions were left blank, even when being asked what services
they would like to have if it were possible. The lack of responses is almost as telling as the
responses suggesting a sense of desperation, a lack of information, frustration, anger, fear
for the future, and hopelessness.
“We experience a lot of social isolation due to people not helping and a lot of friends or
family not wanting to get involved with illness or disability or their houses not being
accessible.”
“Caring is not easy especially when you have family to look after as well. I had to
leave a full time job to care for my disabled brother. The carer has to cut down all
activities including going out and holidays, etc.”
“I can't get to any services you offer because I do a school run which starts at 2.30pm
everything seems to be at that time so I feel quite isolated and cannot meet with other
people. Mornings would help as I really would like to be part of a group.”
The quality of services is seen to be paramount to carers, there were a number of
respondents who choose not to use respite, despite their own needs, because they have had
bad experiences of the care provided for the person they care for.
“I find it very demanding as I am getting older to look after him with his mood swings
and there is no extra help available in the evenings or weekends to give us a break.
The respite care is not suitable to use as my son was in there for 10 days and they
never washed or changed his clothes. The stink was unbearable when he came
home, also another morning on a Saturday I rang him at 1pm he was still in bed with
no medication for his epilepsy and no breakfast. This leaves me with no option but to
keep him at home which often has me at breaking point.”
Page 11 of 74
Mental health
Respondents who care for people with a mental health problem expressed concern about the
availability of services for them.
“The attitudes of some professionals in hospitals, doctors and nurses in a mental
health setting lack sensitivity and respect towards the patient with a mental health
illness”.
“As my son has two severe illnesses I have been totally shocked about the lack of
support shown to him and myself over the 4-5 years. He has had manic depression,
what happens to people who have mental illness who have no family to help them”
“There is a lack of trained experienced people who could give information to carers on
medical problems and the best treatment and handling of problems of this nature in
relation to the cared for person. "
Aspergers/ Autism
A number of respondents who care for people with Aspergers/ Autism felt very strongly about
the lack of support and provision throughout childhood and into adulthood.
“The lack of provision for autistic people is very serious. Caring for them can be very
demanding. It seems we have to wait until they acquire severe mental health problems
as well before they can even be registered, never mind attract services.”
“It is very difficult to get any help or advice for adults with aspergers syndrome on the
autistic spectrum, adults with this condition are not acknowledged or helped by
learning disability social services or mental health social services.”
Caring for children
Respondents who care for children have their own particular problems, when they are young
and not behaving as other children do or as they grow up and prepare to move away from
home. Parent carers express their need to be involved at each step of this transition process.
These concerns may also reflect the transition from the support they have received through
Children’s Services to the support they will receive from Adult Services within Social Services
and how this is managed.
“Its hard, looking after a special needs child, but what makes it worse is people's
attitudes as he 'looks normal' but doesn’t act like the average 10 year old. I just wish
people would stop assuming I am a bad mum and he is a naughty child.”
“The responsibility on carers of children with disabilities means they become too
reliant on us. They need to be given opportunities to socialise for their own
independence skills as well as for us. Kids First has been great with regards to
information.”
Page 12 of 74
“As my son is now approaching adulthood and my husband and I am approaching
pension age, we would like very much to make our son as independent as possible.
Suitable housing with support is what is very much needed in Merton to allow people
like our son to lead a more independent and fulfilled life.”
“Mostly residential problems, our daughter is not yet ready to leave home and needs a
lot of emotional support especially if she catches a minor illness (flu, cold etc) I get
very tired.”
“When our daughter goes into full time care we would like her to go slowly over 2-3
months getting her used to leaving home. It would be too traumatic to do this quickly
for her.”
Older carers
76% of respondents who care for older people are over the age of 50 years, 43% over 65
years and 17% over 75 years. They are mainly caring for their child, and have major
concerns about who will care for them when they die or are no longer able to.
“We would like to be re-assured that as time passes the responsibilities for our son's
life will be adequately picked up.”
“In view of my age, I am concerned about the situation that will arise after my death or
in the event of my physical incapacity will my daughter receive the support she will
require from social services if she is set up in accommodation of her own?”
“Difficulties are arising as we get progressively older and it would help to be in a
position to consider what might come next. It is important for our well-being not that
our son is able to continue to go to a day centre suitable for him and that is happy,
thus giving us freedom from physical caring and worry over his emotional well being.”
“Being in late eighties myself - I wish you would understand.”
Carers assessments
It is notable that less than a third of respondents have received a carers assessment in their
own right, with 63% stating that they had not and 7% not answering. Clearly this is as area
that needs to be progressed quickly.
Direct payments for the carer
In the survey the question was asked whether the carer received direct payments for
themselves. 18% said they do receive direct payments and 78% said they do not. However,
on further questioning by telephone the reality seems to be that some carers do not know
what direct payments are, and were referring to receiving carers allowance. Therefore these
figures are inaccurate. However, they do raise the question of why carers do not know about
direct payments. Further research needs to be done on this issue.
Page 13 of 74
Direct payments for person cared for
Responses indicate that 46% of people cared for receive direct payments, 48% do not and
6% of respondents did not answer. However, the same applies to these figures as above.
Summary of key issues
Respite One of the top two key issues identified; but new flexible ways of providing it so
that it can be tailored to the individual needs of both the carer and the person they care for.
Research and further consultation with carers is needed.
Information and advice Equal at the top with respite needs in the key issues. Carers are
saying that they don’t know what to ask for if they don’t know it is available.
Support for carers One to one support and groups at varying times of the day, with
support provided for the person cared for to enable the carers to take part. Contact with
others to help lessen the loneliness. Ease of access to the agencies providing personal care
so that any problems can be sorted out immediately.
Carers assessments
Carers want their needs to be taken into consideration separate
from the person they care for, and acted upon.
Direct payments Further work needs to be done to ensure that carers know these can be
offered to them and those they care for and are supported to manage them.
A key contact Carers want continuity of support and to know that someone understands
his or her situation.
Financial help Carers need this now and for the longer term.
Help in the home Carers want to maintain a good home environment.
Help to work, study, train Carers want to have the same opportunities as other people.
They want to be able to go to work, develop a career, study, etc whilst feeling confident that
the person they care for is being looked after.
Older carers The majority of carers are over 50 years which is a major factor when
planning services for carers and those they care for.
This survey has given an opportunity for a large number of carers in Merton to give their
views on what services some of them already receive and the support they want and need to
continue providing this valuable service to the community, for a full list see Appendix 5. As
one carer said:
“I feel that we make a huge contribution to the community
and save the government a lot of money.
Page 14 of 74
Appendix 1 - Carers Needs Survey
A new deal for carers - your voice counts
What would make a positive difference or improve your life as a carer?
Have you got an idea that could change carers’ lives?
The Merton Carers Partnership (MCP)* would like to hear from you. MCP is a multi-agency
body that includes the London Borough of Merton, carers and the voluntary agencies within
Merton who provide services as carers for Merton residents. The MCP works together to
ensure that your needs are met by developing services such as information and access,
advice, support, respite and respite activities.
The information you give in this survey will help us to shape services for carers and ensure
that they are there when you need them most. Your individual responses will be treated as
confidential and will only be used for the purposes of finding out carers needs.
Please return this survey by Friday the 19th of October 2007. Thank you for your help.
PLEASE TICK ANY BOX THAT APPLIES TO YOUR SITUATION
Section 1: About the Person you care for
1a.
The person / people you care for is
 An older Person (65+)
1b.
 An adult
(19-64)
 A child
(0-18)
Does the individual you care for have one or more of the following:
 a learning disability
 a mental health illness
 dementia
 a physical disability
 a sensory disability
 a substance misuse
 long term medical condition
 Other:
problem
 alcohol misuse problem
_____________________________________________________________________
Section 2: About Services provided by the London Borough of Merton or voluntary
organisations/charities within the Borough
2a.
Please list ALL the services you receive that gives you a break from your caring
role?
________________________________________________________________________
Page 15 of 74
2b.
Please list ALL the services you receive that provide you with information and
advice?
________________________________________________________________________
2c.
Please list ALL the services you receive that helps you to continue to go to work,
or continue with education or training.
________________________________________________________________________
2d.
Please list ALL the services you receive that helps you to continue with a hobby
or an interest.
________________________________________________________________________
2e.
Please list ALL the services you receive which helps you to continue in your
caring role (such as a befriending service or buddy scheme).
________________________________________________________________________
2f.
Please list ALL the carers events, activities, clubs run by organisations in the
borough that you attend.
________________________________________________________________________
2g.
Have you had a carers assessment in your own right
Yes
No
2h.
Do you receive Direct Payments for yourself as a carer
Yes
No
2i.
Does the person you care for receive Direct payments
Yes
No
Section 3: about services you want
3a.
Please list any service which you would like to have more of.
________________________________________________________________________
3b.
Please list any service which you would like but have been refused.
________________________________________________________________________
3c.
Please list any service which you would like but have not been offered.
________________________________________________________________________
3d.
Please tell us of any services which have not been available but would find
helpful as a carer.
________________________________________________________________________
Page 16 of 74
3e.
Are there any other comments you would like to add about service provision for
carers.
________________________________________________________________________
Section 4: About you, the carer
4a.
4b.
4c.
What is your relationship to the person / people you care for.
Husband
Wife
Partner
Daughter
Son
Brother
Son / Daughter In Law
Friend
Sister
Neighbour
Other:____________________________________
What is your age group.
14-25
26-49
50-64
65-74
75-84
85 or over
What best describes your ethnic origin.
White British
White Irish
White Other
Asian Other
Bangladesh
Pakistani
Indian
Chinese
Black African
Black Caribbean
Mixed Race
Asian / W
Mixed Race Other
Mixed Race
Mixed Race
Other
Black Caribbean / W
Black African / W
Do you experience any other problems or wish to make a comment about your caring
role?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
Page 17 of 74
Section 5: More about the survey – any personal details you provide will be held
securely and in the strictest confidence.
5a.
We may want to talk to some carers who have completed this survey.
May we contact you to have a chat about your responses? Yes
No
If yes, please give us your phone number here:_________________________
5b.
Would you like a copy of the results of this survey?
Yes
No
If Yes, please give us your name and address here:
Name:
_________________________________________________
Address
_________________________________________________
_________________________________________________
Thank you very much for sparing the time to complete this questionnaire
Please return the completed survey by Friday the 19th of October 2007 in the prepaid
envelop attached
Or post it FREE (no stamp required) to:
Planning & Commissioning
Community and Housing
Merton Civic Centre
London Road
MORDEN
Surrey
SM4 1BR
*MCP is made up of London Borough of Merton, Sutton and Merton PCT, South West London
and St Georges Mental health Trust, Carers, Carers Support Merton, Age Concern Merton,
Imagine, Merton Mencap, Merton Merton & Sutton Crossroads, and Rethink.
Page 18 of 74
Page 19 of 74
Appendix 2 – Pie Charts
Statistical break down
Page 20 of 74
Page 21 of 74
Appendix 3 – List of Services
List of services carers are already receiving
Meals on wheels frozen service
Loan of microwave and freezer
Age Concern
Support worker
School
Daily carers
Volunteers while I shop/ takes them
shopping
Day centre
Paid carer
Outreach
SS Men Centre (Day Centre)
Transport
Physio
Supreme - carer
Merton Mind
Brightwell respite care home
VR Road, Mitcham (Day
Centre)
One on One Counselling
Day Care Service
Direct payments
Cumberland Day Centre
Sutton & Merton Crossroads
Home care Service
Carers Support Merton
Respite Care Service
Play Schemes
Woodlands Home
Stroke club
Merton Social
Services
Wimbledon Guild
London 'Bro'
Imagine
Jubilee lodge - respite
Anchor Care
JMC day centre
Medicare
Postage
Merton Home care
Dietician
Day Centre
RNIB college RedHill
Holistic community Care
Occupational therapy
CMHT
Taxi card
HRS
All saints day centre
Eltandia Home
Transition Club
After school club
Agency carer
YMCA 1 day
High Path
Nurses
Mencap
Nursing home
Club time
Some housework
Wandle housing
Thursday gateway club
PHAB
Medico
Funky feet night club
Scope shop work
Weir road
Saturday drop in
Squad
Friends of St Helier
Young Carers talking
Connexions
T.C Club
Talking books service + loan of player
Sitting service
Farou
All Saints - respite
Support for Independent
Living
Buddies
One night in a spa.
Saturday 'Magic Club
Social workers
Personal carer
Eastways Day Centre
Merton & Sutton Crossroads Saturday club
Enara carer daily
Woodland day centre
Eltandia Hall (day centre)
X1 Buddies
Keep fit classes
Family and friends
Wimbledon community mental health
team
Lansdell road independent living
scheme
Over night respite
Guides
Threshold
Nelson hospital
School holiday sports
Special needs school
Camhs
Magic youth club
Residential care home
TREATS Carers Support
Merton
GP Surgery
Polka club - Merton & Sutton
Crossroads
Ashmeal care home
Respite at All Saints
Oasis
Eastways (or eastfields) day centre
Sound Minds (Clapham Junction)
1 respite holiday per year eqv. £340.
The gym at Wimbledon centre
Fresh fields day centre
Merton corporate services dept.
Page 22 of 74
Appendix 4 – What Carers Want
% Break down of areas commented on by respondents
Total answers
MASCOT/Nurses
647
100%
7
1%
Carers Assessment
6
1%
Counselling
5
1%
Mental Health Services
5
1%
Social Worker/Services
8
1%
Suggestions/ Key Contact
15
2%
Accommodation Issues
18
3%
Issues with Current Services 25
4%
Financial Assistance
27
4%
Day Services
30
5%
Transport
30
5%
House Work etc
35
5%
Buddy/Befriending/Volunteer 35
5%
Clubs/Activities
42
Advice/Support
(physical/emotional)/One on
One
43
6%
Outings/Service
43
7%
Home Care/Home Help
54
8%
Respite/Holidays
111
Information on / Access to
Services
108
7%
17%
17%
Page 23 of 74
MASCOT/Nurses
Carers Assessment
Counselling
Mental Health Services
Social Worker/Services
MASCOT
Carers assessment
I need to speak to a
councillor/ psycologist to
help me deal with issues.
Merton Mind
Social Services
Admiral Nurses - specialise in advice on
dementia, we do not have a branch in Merton
I would like a carers assessment
to visit, although anyone can phone for advice
on one day per week.
Spectrum help of medical students
Need district nurses, mother has to travel for
bandaging prescriptions etc.
Help with pain relief for cared for.
Counselling to help relieve
A CPN visit but have been
the despair that sets in
unable to arrange this.
once in a while
Have asked mental health
Counselling, family therapy team for help with above and
with alcohol de-toxing
Merton & Sutton
A carers assessment where
Have asked mental health
Crossroads - refused
something actually changes or
team for help with above and
because there is more
improves.
with alcohol de-toxing
than one dependant
Carers assessment - may have had Counselor to help with my Mental health support for
one but can't remember
daughters emotional needs partner
Carers Act Assessment.
Visits from social worker
Was refused direct help from
social services
Allocated social worker
Support worker for partner
Admiral Nurses are not available in Merton,
they are specialised nurses for dementia
sufferers and their carers.
I would like a carers assessment
Information and direction for chiropody for the
cared for.
Social services actually
listening!
District nurses,
Social services support for
partner
A named specific social
worker for our son
Page 24 of 74
Suggestions/ Key Contact
Accommodation Issues
Issues with Current Services
Financial Assistance
Local Carers news
He must get accommodation
A quicker response from Occupational
Therapy Services. 6 months is far too long Money
and increases the stress on me as a carer.
A printed list of aid and services
would help
Re-housing
Need more than 2 Carers at the care home Financial Help (a little)
Please supply a list for me to choose
Housing
from
The carers should be allowed more time to
Carers Allowance
sit and talk with clients
I am not aware of the services
offered. A guide would be helpful
Space, need more room
Occupation therapy, and speech therapy
should be one to one.
Caring Allowance
Newsletter
Urgent need for level access facilities in the
downstairs of my home (shower and toilet),
have been on the waiting list for 3 years
Comprehensive care plan that takes into
account that the people I care for have
REAL problems
Enough financial assistance
I would like a list of services that are
Permanent residential care for my sister
available - don’t know
The mobile numbers of Carers as the main
More financial help
office doesn't always relay messages.
A printed list of aid and services
would help
Housing payments
Help, and more help from social worker
Training in manual handling (lifting)
Shower in the bathroom instead of tub
Visits from community support staff at home Money
Drug team input
Easy reach
Physio for my wife - not enough
There should be a detailed booklet
with services and facilities offered.
Training in manual handling (lifting)
Requested a 2 bed flat from council by was
refused.
Accommodation
More information on Morden
services for husband and wife
getting out.
Dedicated housing
Help financially or time to study with
aided help
Direct payments for other children
also disabled
Better bedding
A proper education since diagnosed.
Carers allowance as I only get old
age pension
Direct payments.
A quicker response from OT would help.
Financial support
Could you send me a booklet or data
concerning services please? - Don’t Shower in the bathroom instead of tub
know
Waiting for an OT assessment so they can Financial assistance at least my NI
access garden safely with a ramp
stamp contributions paid
Knowledge of schemes activities,
support, child care etc.
A list of services would be useful
OT groups need to be restarted; Carers
want their relatives to recover.
A proper education since diagnosed.
A bigger flat in the same area.
A lift
More social housing for young people with
mental health
Carers Allowance
A small loan for my needs
Would buy in privately anything required is
normally cheaper than Merton can supply
Direct payment as a carer,
and of a better quality with some concept of
dignity and respect.
Page 25 of 74
Suggestions/ Key Contact
Accommodation Issues
Issues with Current Services
Urgent need for level access facilities in the
downstairs of my home (shower and toilet),
have been on the waiting list for 3 years
Any help I receive I have to pay for out of a
very limited budget as I have found in the
Help with holiday money
past, local authority support quite unreliable.
New carpets and more lino coverings
More care, less paper work, more
understanding.
More schools for disabled people
Financial Assistance
Direct payments,
A decent Carers allowance
And mentoring through transition, more in
the early phase.
Financial help for my daughter
More borough appointed carers
Subsidised gym membership, or
other activities e.g. bowling
Dealing with a person who is double
incontinent is very difficult and yet I have
been refused the type of incontinence pad
that would make life easier.
Money to pay private help
We do not have a social worker.
Free assistance and aids for the
person cared for
Information on the direct payments scheme.
Info is not covered by the hospital discharge More financial support
booklet.
It’s not easy to find out what is available and
Direct payments
what you are entitled to.
A decent Carers allowance,
Why have I never been paid as a
carer for all these years
Page 26 of 74
Day Services
Transport
Day services - to get out of the house in
increase independence.
Day centres
Free transport service - or more direct
payments to pay £16 / month fee for
transport.
Transport, i.e. taxi card
Day centre til 7pm
Travel pass (freedom pass)
More flexible times
Reasonable transport to JMC
Extended day centre - until 6.30pm
Day Centre
More help and attention to get to day
centres
A freedom (travel) pass
Light house transport service assistance
House Work etc
Buddy/Befriending/Volunteer
I like some housework done as I have 3
children and no time.
Buddy scheme?
Help with the house work
Help with my garden and general
housework
Befriending
Someone to take my husband for
walks
Home cleaning
Help cleaning the home
House cleaner, hoovering
Someone to help with cooking, washing,
Help with mobility, financial help unavailable
cleaning gardening.
More day centres for my husband so I can Help with taking my daughter to chiropody
go out on my own.
and dentist
Someone who could help with
shopping not just for the basics.
Befriending service/buddy scheme
Befriending/buddy scheme
I'd like a shopping service for my mum
or befriending
When I was ill and had an operation I was
refused any help, even cleaning.
Befriending,
Help cleaning the home and allow me to
Voluntary help
rest
Day centre
I need off street parking in the front garden
of person cared for.
Yes day centre for Tuesdays
Transport system service to get to and from Help in house work general
the hospital.
An escort to take my son to college in
Sunderland
Can’t afford day centres anymore - need
to be cheaper so he can go.
Mobility Scheme
Help with housework
Someone to help relieve some of her
social isolation, take out shopping etc.
Extended day centre hours.
I have asked for an increase in number of
rides on my taxi card and was not
acknowledged.
Help with cleaning, gardening etc.
Maybe a buddy to take him out.
I need a day centre but is too far away,
help with transport
Transport to activities
Help with my garden and general
housework
A befriending service for me?
Reasonable transport to JMC
Travel pass and gym membership for both
of us
Help with hoovering the home and
handyman
Someone to take my wife out, and help
look after her.
A day centre, i.e. Cumberland where
someone speaks other languages i.e.
Spanish - nobody speaks Spanish
Dial a ride
Help cleaning and prepare food so I can
go away for a while
Befriending
JMC
Disabled badge for car
More help in the home
Day centre but no one will have him.
Transport service south west London
House cleaner etc
Lunches at the day centre e.g. cheap
café.
No replacement for chapple or chand in
Mitcham day centre
Travel training, one on one home tuition with Help with housework during school
full medical support
holidays
Help with travel expenses
Reliable gardeners at a fair charge. (So
hard to find).
Page 27 of 74
Befriending service/buddy scheme
Befriending/buddy scheme, Carers
events etc
People to take my place for outings
with my mother
Buddy or befriending for my daughter,
weekend activities
Day Services
Transport
House Work etc
A day centre, i.e. Cumberland where
someone speaks other languages i.e.
Spanish - nobody speaks Spanish
Blue badge
Help at home
JMC - cheaper
Transport, i.e. taxi card
House work
A day centre catering only for Alzheimer’s Travel pass and gym membership for both
and mental health
of us
A few hours a week to help with cleaning
Lunches at the day centre e.g. cheap
café.
Help with cleaning, gardening etc.
Dial a ride
Buddy/Befriending/Volunteer
Someone to collect her from school
once a week and play with her or take
her swimming
Just a befriending or caring role to give
me respite.
Some one to take him for a walk in his
wheel chair, or to do some more
physio exercise.
Buddy scheme
Extended day centre opening hours,
weekend day centres
I find myself and the person I'm looking after
missing out on so may events because of
I would like a gardener which I am finding
transport problems, I wonder if I can get
hard to find
help with transport in any way.
Help with my garden and general
Disabled freedom pass
housework
Day centre for Tuesdays
Mobility Scheme
I would like some help with my garden as I
Someone to help with homework once
find it hard to do on my own.
a week.
Longer at the day centre
Free travel on all London services, the
disabled get it so why not the carer?
Help with cleaning etc help with shopping
Day centres for younger people with
dementia or Alzheimer’s
The closure of day services in Merton is a
serious problem to carers looking after
people with schizophrenia who are too ill
to access mainstream.
Day centres that open at the weekend,
extended opening hours at day centres.
If there was a place she could go
occasionally from the day centre to there
for a few hours because I need to have a
social life.
Dial a ride has proved of little help to me
and my daughter so an improved home
transport pick up service would be great
Freedom pass
Someone to take my 'cared one’ to
medical appointments, as I have to
take time out from work to do this.
Help with taking my daughter to
chiropody and dentist
Carer to take my wife out to the
theatre/cinema, shopping to give her a
break and myself.
Some help with cleaning of home now and
again
A befriending services for the person I
care for.
Befriending/buddy scheme - what is
Preparing food
there?
I need off street parking in the front garden
of person cared for. I feel too much difficulty
Cleaning,
when getting in or out of the person I care
for's house.
Only more help around the house
Repairs in the home need doing.
House help, daily or a few times a week.
Someone to help with cooking, washing,
cleaning gardening.
Domestic help for my son to save me
some work
Page 28 of 74
Visiting her while I am away.
People to take my place for outings
with my mother i.e. the hairdresser,
shopping etc
Shopping
Buddy or befriending for my daughter,
Someone to take my wife out to the
cinema etc
To take my husband out say for an
hour or so as this would give me a
break.
Clubs/Activities
Advice/support
(physical/emotional)/One on One
Outings/ Service
Home Care/ Home Help
Clubs for special needs children
Advice - one on one chat about once a month
Local coffee mornings, small groups for
Theatre trips
discussion.
Home Care Service - Personal care
More clubs and activities for my
daughter
Help, advice and outings either locally or
festival trips
Massage
Home care
Day/evening activities for my daughter
I would like to be able to talk about my
situation
Social events
He is getting older and needs more
personal carer
Extra activities e.g. music group and
swimming
More advice and support re: employment.
Activities
Home help 2 hrs per week
Activities for young people where I can
take and leave for a couple of hours
Regular Carers meetings and social
gatherings
Carers events etc
Club nights
Any would be a help
Something for interest in this area
24 hour round the clock supervision for
my mother
Specialist play schemes during holidays
Support
for severe disabilities
Contact with others, social events
Help, help, help - More Carer hours
After school clubs and holiday services
More outings on which disabled cared for
Home care
person could accompany Carer.
Help with time off work, my rights etc
Home help
I'd like my child to do swimming lessons
and piano lessons and other leisure
Key worker support
activities
More outings, break from caring
More help with care for my mother
More activities for children and ADHD
and ASD
Advisory service
Days out for children with disabilities and
siblings
More care for my husband
Support so she can attend mainstream
activities on the holidays
Advice service - I don’t know what services
I'm entitled to access.
Family therapy, day outings arranged by
Merton for adults similar to children’s
outreach
Personal support
More specialist play schemes or
schemes with trained staff
Advice about what is available to carers, a
friendly ear to sound off to sometimes
More social activities
More evening care
More schemes in school/college
holidays for my son
One to one basic skill on hygiene course
which can be applied to everyday life and
communication skill service
People to take my place for outings with
my mother
More hours of caring assistance per
week
Better leisure possibilities for
adolescents and teenage autistics.
More people to talk to
Special therapy and physio therapy
Home help, but can't afford.
Page 29 of 74
Clubs/Activities
Advice/support
(physical/emotional)/One on One
Outings/ Service
Home Care/ Home Help
After school clubs and holiday services
We were in the middle of renovating when my
husband had a seizure, the bathroom is still
half finished, I wash and dress my husband, I
would like someone to come and advise me Outings like Brighton
on what could be done to make my job
easier, he has difficulty getting in and out of
the bed and the shower.
Someone to come in and give me a
break
To learn how to swim.
Group discussion
Midday check calls available at
weekends and bank holidays
Carer day outings
Specialist play schemes during holidays
Carers organisations
for severe disabilities
Social place where my husband should go I would like my husband to have help
and make some friends
with personal care
One on one for holiday clubs
Advisory care of handling Alzheimer’s
patients
Assistance, advice and support
Evening clubs
Would like advice please
Beach trips
I would gladly attend activities or clubs
after work
More people to talk to
Services similar to children’s outreach
after 18 yrs old.
Care for my wife
Day/evening activities for my daughter
Support for adults with ADHD who are also
Carers and want to stay in employment
(single parenting)
Something between 9am and 2pm
Extra help for home care - more hours
After school club
Specific parenting skills run in borough
Chiropody
1 hr extra of help
Social isolisation is a big issue. Daughter
I'd like my child to do swimming lessons
does not want a day centre to visit and after
and piano lessons and other leisure
work it is difficult to interact as I am tired activities
which puts dress on the relationship.
Social contacts and support
Carer to help shower my mother - she
had a stroke 4 yrs ago.
Children’s after school club
ADHD support group
Physio therapist and special therapy
Was refused daily help for a few hours
for his personal hygiene and insulin
injections.
Child play scheme with support
Carer Training
Speech therapy to work with the child one Help moving my partner - did it with
to one
great difficulty
After school club
I would like to have a chat with someone from
the Carers support team - I work so can't
Museum trips to London
attend the meetings.
Help me give him a bath or come and
sit with him while I can go out and do
some other work, like shopping etc.
Places you can take special needs
children
Help
Free telephone
More help during the holiday time
Any sort of help
Group therapy for Alzheimer’s and
dementia.
Care for my wife
After school club
Evening clubs
Help with an exercise program at home
One on one speech therapy at home
Page 30 of 74
Extra hours of home care service,
mornings/evenings.
Home help
More Carer hours, the situation is now
desperate.
Clubs/Activities
Learn how to swim
Advice/support
(physical/emotional)/One on One
Outings/ Service
Home Care/ Home Help
Any help would be appreciated.
Something between 9am and 2pm
An evening carer once a week so I can
go out.
Home chiropody service for myself to
avoid long waits at clinic away from my
caring role.
Home help
Someone who teaches disabled children Would like advice please
to swim and ride a bike
A club attended by other carers to meet One stop advice centre regarding benefits,
socially
services etc that are available.
Organised activities
Weekend activities
Hairdressing, chiropody for older people.
Extra help for home care - more hours
Don’t know, Mabub Khan used to do a lot for
Chiropody, mobile come to the house?
carers, more of that please.
Home from home service (name may
have changed)
More support and understanding for me, I
Chiropody, and care that is not provided
spend 7days a week caring and need space. by district nurses only.
Total care
Play scheme and activity group e.g.
swimming
A phone service where my mother in law
Talking to others bringing up a child who has
could always contact someone while I am 1 hr extra of help
cerebral palsy
away.
Accessible holiday schemes, even if
only one or 2 days per week.
I would have liked help filling in DLA forms
when my daughter was really ill with MG
After school club/holiday clubs
Contact with someone who understands
autism would be very helpful
Music therapy was great when he was 4,
Support when needed, that is not been
but once he went to school it stopped.
means tested
A wheelchair for my wife.
Help with time off and do hobbies.
A part time easy job for the disabled adult Check calls and evening visits on short
which would act as a respite for the carer notice requests
Evening courses, go to cinema with my
daughter
Daily help for a few hours, seriously I
need a break
Singing for young people with speech
difficulties, sports for disabled children.
Group discussions about behaviour problems Post-diagnosis help for autistics, ME
for both of us.
specific health care.
A Carer capable of attending to all the
patients needs whilst I could go out
one evening a week.
Child play scheme with support
Help and advice and where to go instead of
staying at home
Someone to come in and give me a
break at least once a week.
Holiday clubs for disabled children
Help to know what my brother is entitled to in
Chiropody
terms of care
I would like more of the same (as she
already gets)
More activities
Information of what is available both for
ourselves and our daughter. Good
communication with the CHMT
Further education
Breaks for Carers for a few hours
More information and intervention
Carers support Merton seaside trips
Personal care and home help
The opportunity to get a Carer at short
notice
It/Computer skills
24 hour round the clock supervision for
my mother
Home help
Page 31 of 74
Clubs/Activities
Advice/support
(physical/emotional)/One on One
Outings/ Service
Home Care/ Home Help
Someone to give me a break for a few
hours
Care for child if you need to high
school/college visits or hospital with
other children.
Extra help for home care - more hours
Someone to help care for my husband
giving me a little more time for myself
Check calls and evening visits on short
notice requests
Due to advancing age and
deteriorating health I would prefer to
have home visits
I hop they will give me a hand to have
a break.
A Carer capable of attending to all the
patients needs whilst I could go out
one evening a week.
Page 32 of 74
Respite/ Holidays
Information on/ Access to Services
Respite via carer and help to get into traineeship or work.
Respite care home.
Reliable respite care
Respite that we can access and utilise
Proper provision during the summer
Respite
Respite care
Long term breaks
Respite care so I can go out in the evening
Respite
Respite
More respite during summer holidays
Respite help
Occasional overnight respite - in her home
Short breaks
More respite care
Respite care
Respite
Expanded respite
Respite care for my father at home
Short weekend breaks and respite care
More respite available
Respite in the home
Respite but nothing has been suitable
Community based respite e.g. home from home
Respite
Respite - longer period
More respite care
Residential respite for shorter than a week
Respite care, outreach days out.
Hours of respite per week
More respite breaks
Going on holiday at times
More breaks from caring role, especially summer play schemes with support for my
child
Do not know what I am entitled to
Don’t know
I need to know what services there are
Don’t know about any services available
Not sure at the moment
Any I would consider
I don't know of any services.
I don’t know what is available
Don’t know
Not aware of any
Don’t know what services, need information
Don’t know about any services available
No real knowledge of services available
Do not know
I would like more information on help for carers
More information about services
Don’t know
Have no idea of any services which are available
Don’t know
Anything would be nice
Don’t know
Don’t know
Don’t know
Don’t know
Don’t know
Don’t know
Don’t know
Do not know what is available
All
I would like to know what services are available
Don’t know what services, need information
I would like information available to carers
I do not know what is required
Page 33 of 74
Respite/ Holidays
Information on/ Access to Services
I am single and don't have any support I really need more respite care cheaper, can not
Not applied (don't know of any)
afford
Proper provisions during the summer
respite somewhere like tadworth court
Respite
Respite
Respite care for my husband
Opportunity to go to university
Holidays
Asked for respite care in at home in past but this was not available then/
Respite but my son lives independently
Respite in the home if possible
Respite from y son,
Long term breaks
holiday
Holiday
Haven’t been made aware of any to apply for
Respite while I am taking exams
None don’t really know what is available.
A package for my wife so I can take a weekend off
Respite
Don’t know
Don’t know what is available
Everything you have to offer???
- Don’t know what is there
Do not know
I am not sure if there are any services
Don’t know
?
?
Don’t know
Unsure
I don’t know what is available.
Don’t know
Don’t know what services, need information
Don’t know about any services available
No real knowledge of services available
Don’t know
I would like more information on help for carers
Not sure what is available
Short breaks
Holiday service
Respite Care
Going on a holiday sometimes
Short break holiday for carer or cared for persons
Respite care for my father at home
Respite
Flexible respite solutions, alternative to all saints weekend day centres
Residential respite less than a week or a weekend
Occasional weekend respite.
Respite while I am taking exams
Possible respite care or the chance to have a holiday/weekend away on my own.
Weekend respite e.g. 4pm Friday til 4pm Sunday
When caring more time off (respite), now I think the care home needs more staff.
Respite for when I go on holidays, near to me as possible.
Short breaks
?
?
Unsure
Don’t know what services, need information
Don’t know about any services available
No real knowledge of services available
I would like more information on help for carers
Don’t know about any services available
Everything on offer
Have no idea of any services which are available
All
Page 34 of 74
Respite/ Holidays
Information on/ Access to Services
To be able to know where I can take mother for a break knowing she will be looked after
Anything on offer
properly and taken out etc.
Different types of respite, e.g. club following on directly for my son, better overnight
respite, holidays.
Someone to stay in the home overnight so that I can go away sometimes.
Respite
Childcare so I can spend more time with my sister.
Respite when I need it
From what I have seen and heard the respite services available to her and us are not of
a high standard for me to think about sending her so any respite would have to be home
based e.g. crossroad
Holidays to disabled facilities
Holidays
Occasional weekend respite.
Holidays
Crèche facility in Wimbledon
Child minders (ADHD friendly) after school so can work, baby sitting services for single
parents.
Residential camp/activity
I would like to know that there is someone I can call on if I am unwell etc.
Merton & Sutton Crossroads
Merton & Sutton Crossroads for a few hours on the weekend
Merton & Sutton Crossroads
More Merton & Sutton Crossroads
Merton & Sutton Crossroads
Merton & Sutton Crossroads
Merton & Sutton Crossroads
Merton & Sutton Crossroads
Merton & Sutton Crossroads respite care needs more development
More time with crossroad help e.g. weekend help, Carer to have a weekend away
More night care from Merton & Sutton Crossroads
Merton & Sutton Crossroads - refused because there is more than one dependant
In the past was refused Merton & Sutton Crossroads but now ok.
More than 3 hrs per week from Merton & Sutton Crossroads
More time with crossroad help e.g. weekend help, Carer to have a weekend away
Merton & Sutton Crossroads
Sitting service, more crèches
One off sitting service
Don’t know
Information on what services are available
Don’t know.
Have no idea of any services which are available
Don’t know
Don’t know
Don’t know
None don’t really know what is available.
Don’t know
Don’t know
Don’t know as have currently only been offered respite
Not sure what is available
Don’t know what is on offer
Don’t know
Don’t know
Don’t know of any that is available
Don’t know
I don't know what is on offer
Don’t know what is available
Don’t know
?
Anything
Don’t know of any service
Don’t know
Unknown
Don’t know
Don’t know what services, need information
No real knowledge of services available
I would like more information on help for carers
Have no idea of any services which are available
Anything
Don’t know
Page 35 of 74
Respite/ Holidays
Information on/ Access to Services
Sitting service
Sitting service
I would like to have more sitting hours so I can go out more
More of sitting service
Someone to sit with our daughter one evening so we can go out occasionally
Someone to stay for a few hours when I go out.
Not sure
Don’t know
Don’t know
Not that I know of
Don’t know
Don’t know
As I do not have any time free after doing a part time job I do not know what
services are available to help me.
Don’t know
Don’t know what is available
Carers Support Merton
Sitting service
Sitting service
A sitting service so I could go out.
Sitting service
Sitting service
A pool of emergency sitters to call on if needed, particularly out of regular hours.
Someone to sit with my husband maybe once a month
Page 36 of 74
Appendix 5 – Problems and Additional Comments
Do you experience any other problems or wish to make a comment about your
caring role? (grouped by researcher)
Work/Education
As a worker I find that increasingly I am using my annual leave to take my husband to hospital and doctors
appointments etc. once per month.
I do not feel my brother’s care is optional from a medical point of view. Therefore I am having increased work
and picking up the slack from this. I feel it is frustrating that he is more unwell than perhaps necessary and
that it is assumed I will carry that burden. It has already been detrimental to my career, exams, friends and I
am only 26. I have the rest of my life to live with this.
I'm currently in full time education at university and doing a placement year. I find it difficult to take care of my
mother everyday. Direct payments (carer) helps my mother 2hrs per day and other times nobody cares until I
return home in the evening.
Medical/Mental Health Services
Difficulty over hospital appointments for both myself and my brother.
The attitudes of some professionals e.g. in hospitals, doctors and nurses in a mental health setting lack
sensitivity and respect towards the patient with a mental health illness.
As my son has two severe illnesses I have been totally shocked about the lack of support shown to him and
myself over the 4-5 years. He has had manic depression, what happens to people who have mental illness
who have no family to help them.
There is a lack of trained experienced people who could give information to carers on medical problems and
the best treatment and handling of problems of this nature in relation to the cared for person.
Healthcare, GP service is poor; they do not cater for housebound patients and make you feel like a neglectful
relative if you could get her to the doctor’s surgery. They don't come out to visit or communicate with us.
I recently attended medical app and was delayed going home, would like a service that caters for this.
As my mum suffers with depression for over a year now it has rubbed off on me so I suffer from minor
depression.
There have been problems with the phone calls over the past year, he has made a number of overseas and
premium rate phone calls late at night and early mornings thus incurring high telephone bills, we had his tele
line checked but it seemed alright. He denies having made the calls, I have been in touch with BT and I have
now been able to place a lock on such calls which I trust will solve the problem, time will tell. My husband and
I have to keep an eye on his money (how much he draws out etc), as he has no idea how to budget.
My son has almost fully recovered from his episode of mania, which was severe and for which he had to be
sectioned. I did not receive enough information as a carer; I would have been very relieved if he had been
offered more facilities while in hospital, it would have reduced my stress level and anxiety. Now I no longer
need help.
Finances
Refused to pay Carer Allowance even though I look after my mum.
As my only income is Carers Allowance I would like to get free prescriptions.
My caring role is my responsibility therefore I must do my very best for my husband. But I need a life too and I
work part time which has become more difficult each time as I am also disabled but not as bad as my
husband with Parkinson's disease. I need more help so I can work and pay the bills.
I told I am entitled to Carers Allowance but denied because I receive OAP. This seems to imply that elderly
people are disqualified simply for being old, it makes no sense to me.
Page 37 of 74
At the moment I am struggling financially as I only receive a little allowance and I only work 2hrs a day in the
evening as a cleaner.
I get little pension, I also do not get Carers allowance as I am getting state retirement pension. I need more
financial help. I must say we are getting a little help from CSM and LBM - thank you.
Council gradually passing various cost to carers such as JMC day attendance cost, all saints respite cost,
being put up. Carers and cared for should be given more consideration so that all the above services be more
affordable, and can be used more often to provide respite to the carers.
Because of my husbands savings (£21,500) we have to pay full price for all services. We expect to pay
something towards care but feel we are not only paying for our services, but for those who have not bothered
to save. Our savings are for house emergencies, we can't go to a housing association for household repairs
or for stair lifts and bath aids, we pay the full rate. Therefore not only does my husband refuse help and
suffers - it affects me as a carer. Direct payments do not want to know us. Document attached: 'Unfair care
charges to those who have savings’.
I was registered as a carer when I was looking after my mother but since she died last October I have been a
part-time carer for a friend who lives in Beckenham so continued with this registration so I keep informed.
The only problem I experience is lack of money, when I got Carers Allowance my income support was cut too.
The biggest problem is the council. I am concerned about NI stamp loss for those receiving attendance
allowance. This goes towards the increasing percentage that is the Council tax charge.
Due to my own long-term ill health M.E (chronic fatigue syndrome) I do not qualify for the Carers Allowance
as I am receipt of the disability allowance. Which I find rather irritating as if I was in employment I would
receive the allowance. Mother is now almost bedridden and I am therefore on hand 24hrs per day, 7 days per
week.
I am concerned about National Insurance stamp shortages for those caring for people receiving basic
attendance allowance. Council tax is taking an increasing proportion of pensioner’s income.
Maybe some form of compensation should be considered.
As a carer and not going to work I find it very hard to get by on the amount they give me each week. My
money is made up from social security, extra money would help me a great deal.
Are there any income tax benefits available to carers?
We had some home care that was not satisfactory. Carers only did what they wanted to do and not what my
mother wanted. My mother had to pay and could not afford to, there was also a cleaner who was useless and
money was wasted there as well.
I care for my grandaughter who is 13yrs and have since she was 9 months old due to her mother’s severe
disability. I also do all my daughters washing, ironing, shopping, cleaning, which is not covered by her care
plan. Also I take her to the hospital etc whenever she needs it. Since retiring I have had no financial
assistance, I have a small private pension so do not qualify. The saving I make for the government is
considerable and taken for granted.
Its very hard to look after someone and yourself, its especially hard when they take up most of your time
which then leaves the carer in a position to not earn with the Carers Allowance being next to nothing.
I tried completing a claim form for disability allowance but most of the questions were inappropriate or difficult
to answer so I abandoned it.
Not paid enough for the important role I have to constantly carry out.
I wish to be paid as a carer as I am now retired and disabled.
I am caring for two disabled adults, but I receive only £48.65 caring allowance per week. I would be earning
more if I was working. Because my husband is working full time, I don’t even qualify for free dental or
prescription or optician. My husband can only afford to pay for his own treatment. Questions when applying
for these services are designed to deprive me of both extra money and free dental/prescription/optician
services.
Page 38 of 74
Transport
Don’t think I should pay £16/month for transport when I my son only gets £48 a week in direct payments to
pay for day centres.
I would like to get some advice or help about how to get a disabled van to transport my son as I have to be
using a car and have trouble lifting him in and out.
£7 per week and I have to spend £29 per week on a travel card as I have to attend a clinic in Kingston daily.
No free travel why? Carers are undervalued and under paid yet we are 24/7.
As with many elderly carers of people with MH problems, I myself am disabled (can’t drive or walk much) and
am struggling financially. I asked for more rides on my taxi card but had no reply. This would help me in my
caring role, I get exhausted.
My husband has a taxi card but we find it difficult to access as Mitcham does not have a cab rank and it
seems other ranks do not want to accept our area, fortunately we can use capital call.
I have problems taking my mum out on buses, she cannot get into a car as she is in a wheelchair, and we
often cannot get on a bus until the 2nd or 3rd time, sometimes even the 4th bus because the bus driver has
pushchairs on the bus.
Dial-a- ride has proved of little help to me and my daughter so an improved home transport pick up service
would be great.
I would like more outings for husband and wife that I read about that seems to be in Mitcham such as trips out
but not from Morden.
I find myself and the person I'm looking after missing out on so may events because of transport problems, I
wonder if I can get help with transport in any way.
I am facing parking problems as sometimes my car parked far away from the house of the person I care for
and I have to take her outside or inside the home as she is in a wheelchair.
I am unable to leave my wife on her own and if we attend together any function etc, adjacent car parking
facilities are necessary.
Social Isolation and Loneliness
We experience a lot of social isolation due to people not helping and a lot of friends or family not wanting to
get involved with illness or disability or their houses not being accessible.
Caring is not easy especially when you have family to look after as well. I had to leave a full time job to care
for my disabled brother. The carer has to cut down all activities e.g. going out, holiday etc.
I can't get to any services you offer because I do a school run which starts at 2.30pm everything seems to be
at that time so I feel quite isolated and cannot meet with other people. Mornings would help as I really would
like to be part of a group.
My sister and I find it quite hard at weekends keeping mum occupied. My sister sees mum in the week but is
looking for a group she can join on other days when she is not at All Saints. She is still quite good with mixing
with people, and I think it helps her confidence too.
A befriender for my wife so I can go out and do the shopping.
I had two knees replaced 2 years ago and am no longer active.
I have been in touch with carers association which offered outings etc, however I have a problem with walking
now so can't go.
It is not easy to get to Mitcham where all the activities occur. Something in this area (Merton Park) could be
more acceptable.
Page 39 of 74
Information
As he goes to college now after living at home with me for four years I have a break now. He visits 1-2 times
per week. I had to cope on my own most of the time he was living with me in the 4 years as I did not think I
could ask for help.
I haven't been given a lot of advice, support or been made aware of services that are available within the
borough. I find it very difficult trying to fulfill all that I have to in my life and in the lives of the children.
I am happy with the service provided by Carers Support Merton. Both myself and my husband are carers for
our son who lives independently in a flat, we are under constant pressure and find that very little help is
provided to our son on a one to one basis.
I find it increasingly difficult to cope within my caring role, every request I make results in mountains of
paperwork and very little action. The amount of financial demand on my mother from Merton far exceeds what
Sutton used to demand. The paperwork is difficult to understand and help is NOT forthcoming.
Frustration, not knowing who to go to for services for the elderly apart from social services.
Do not know what facilities are on offer.
Do not have enough information.
I feel there is not enough information for carers, i.e. what are we entitled to etc.
A printed list of services would help, or if social services tell people of services when they visit..
If full service list was available that would be an advantage.
My father is still able to live at his home, my sister and I see him 6 out of 7 days. The nurses are a great help
and we cope with fathers needs. We may need more assistance in the future. Would like to know what else is
available.
I am tired and sick and have a heart problem, and arthritis and depression, I need respite and help cleaning.
I need to know what services are available and where to get them as I work full time, I do not have time to find
out, my mother is old and needs lots of help. Please send information.
I love my husband and he is grateful for our relationship, and the care he receives, but it would be good for
both of us to get more information to ease our lives.
I have only just started to care full time for my brother in law so am unsure about lots of things.
I find difficulty in following telephone conversations due to people's accents, would prefer to have support staff
and advice by home visits. Having a face-to-face conversation rather than automated telephone (confusing) is
better.
Needs more attention that another child, toilet training is difficult.
I do not receive any volunteer services, it is difficult to know what services are available, often come across
services/benefits by accident.
Lack of awareness and understanding.
I would like to have more info on the services by the borough, which may help with my role as a carer.
Not enough hours in a day.
Difficult to find service.
Help at Home
It would be nice to get help when I need to go out and someone to come and look after him during the day
time so I can do other house hold stuff.
Page 40 of 74
My main problem is that my wife does not like to be left alone, sometimes I need someone with her if I have a
hospital appointment or other appointments.
Sometimes dressing my husband is hard as I am disabled with arthritis.
If you could find me a gardener
It would be helpful to have mobile’s for Crossroad carers so I can contact them directly, the office isn't always
able to get the right people. My caring role is not as stressful as some, I consider myself very lucky to have
Merton & Sutton Crossroads.
I stay at my mother’s one bedroom flat. I sleep in the living room this is ok for both of us, however, if it is
possible, would appreciate a 2 bedroom flat in the same building when available or a one bedroom flat for
myself in the same building when available.
I have a hard job getting her to co-operate having a bath.
I suffer from rheumatoid arthritis so am finding it harder to care for my daughter as much as I want. I find it
harder to transport her to school and helping her around the house
My caring role is one I have to live with 24hrs a day, I need help around the house my partner used to help
before the stroke and now can't.
At present I am able to cope as my wife has 2 visits from Holistic Care and they help with the washing as well.
Merton Council are most unhelpful. I am 74 and my husband is 83, therefore we are too old to do household
maintenance. Merton Council don't make any concessions for the elderly.
Just that I am also disabled and have arthritis in both knees and use a cane to walk, trying to keep the house
clean, I had 1hr of home help taken away from me and now am getting older and finding it very hard, need
help please
Its hard going, small things etc when shower goes wrong or problems who can you call? Also I don’t think you
can call some people carers who help you, their attitude and what they do they don't care about the client.
There should be checks by agency managers to see how the services is actually delivered at ground level.
I find it very demanding as I am getting older to look after him with his mood swings and there is no extra help
available in the evenings or weekends to give us a break. The respite care is not suitable to use as my son
was in there for 10 days and they never washed or changed his clothes. The stink was unbearable when he
came home, also another morning on a Saturday I rang him at 1pm he was still in bed with no medication for
his epilepsy and no breakfast. This leaves me with no option but to keep him at home which often has me at
breaking point.
Respite
Margaret experiences chronic anxiety, especially when she is alone. I could really do with more respite care
for her. At the moment she gets 4 hrs a week which is very welcome.
I am exhausted and would like the opportunity to share, or at least have occasional relief from my
responsibilities. My ideal would be to have someone befriend him and keep and eye out while I am away for a
weekend.
Apart from a holiday which I can't afford at the moment, possibly 2 weeks or more.
My son needed more care so is now in home care, he comes home once per week.
The main problem is not having any breaks due to my weekends being taken up with seeing my parents.
Communication with carers and care providers and myself is not satisfactory.
More free time.
Page 41 of 74
First I would like to thank all the carers for their help and concern in looking after my mother, but I must
express concern about the amount of paperwork involved in trying to get financial assistance for her.
Obtaining provision at short notice for help with shopping, washing and companionship.
I'm only able to go shopping if family can stay and help. His CPN is a great help and support.
I don’t know about any other problems.
More choice in respite provision is required. All Saints is the only solution for my daughter aged 25. I don’t like
it because we do not like residential respite. Day centres that open at the weekend would help.
Respite can only be for a couple of days at a time as she doesn't get enough sleep there and comes back
exhausted so we something different.
It is very difficult to find services for my husband because of his challenging behaviour i.e. day centres,
escorting service, transport.
I would like to get mum into a day centre on Tuesdays as she gets very lonely and upset, I have been unable.
My brother lives at home but works, I visit/phone mum everyday, and I stay with her Wednesdays when my
brother is at golf.
Mother is in her mid nineties and very lonely on occasions. A regular visit would help and relieve pressure on
myself.
My daughter attends a special needs college and a day centre 4.5 days per week. From what I have seen and
heard the respite services available to her and us are not of a high standard for me to think about sending her
so any respite would have to be home based e.g. Merton & Sutton Crossroads
Because there are not enough staff to care for my mum at the care home I am still a career to her. I have to
pay all her bills, go shopping for her, check health matters - things go missing at the care home so am always
replacing toiletries etc.
Merton Mind Open House is a life saver and I hope it continues, gives everyone a break together, the number
have been going down lately because of deaths etc, but I am sure there are other people who don't know
about it and would love to go.
I care for my wife who has MS. At the moment the only service we use are direct payments that we use for
respite care. In our assessments they recommend respite for ourselves, so why when we did apply that we
were met with so much resistance and pressurised to reduce it, especially when my wife’s condition is getting
worse.
I can get regular help from Merton & Sutton Crossroads. However I would like to have help from time to time.
My job is part-time and not regular. I worry about getting a sitter for each occasion and muddle along.
Should have higher standards of care in respite, more opportunity for carers to express their views carers get
a raw deal. Should not be cutting services but increasing them.
Will need somewhere to go (respite).
Our son lives in housing now and is well supported by his key worker there, but sometimes we do feel
isolated however the staff help us through that..
At times no carer is sent, and three times a Belgravia carer didn't turn up (twice in one day - so no care that
day) and all they said was sorry.
It is very hard as I am not keeping very well myself. I am only doing this because Debbie is my daughter and
when she goes to residential homes she does not get proper care.
Michael needs constant care, he's also very difficult to manage. He desperately needs a holiday and a care
support worker is needed to accompany Michael.
Above all I wish to continue caring for my mother in her own home, her own environment. As a divorced
woman I live with my 89 yr old mother who has Alzheimer’s, my father died 2.5 yrs ago and it is very
Page 42 of 74
emotional watching your parent deteriorate each day. Without the help of my grown up children I would not be
able to leave the house, so occasionally friends come to sit. I am very grateful to Cumberland day centre
because it helps me keep my mother at home by providing experienced sitters.
Would like more respite during holidays.
Physical & Emotional Demands
I find the caring role difficult and I feel isolated at times, our only good friends live far and I find the drive
difficult. It is difficult to motivate my husband to do anything but sit in front of the tv.
I feel trapped, my life is not my own anymore but is controlled by obtaining alternative cover before I can do
my things in life. I can't do what I want when I want to.
Lots, I can't put it down on paper.
My brother can be hard to be around when his temper blows up and has a dig at me for no reason.
Its just hard work.
Very demanding and not appreciated, mentally, very demoralising, need some social activities once in a
while.
I feel that if you are seen to be coping as a carer no help is offered and there are difficult times when support
would be appreciated.
Its difficult for me to achieve his maximum personal care i.e. all hygiene, as I’m still full time working. He
rejected a respite care and stayed only for 2 days last year.
Its lonely being a carer, public don't understand what goes on behind closed doors, violence etc.
I just find it difficult sometimes to cope with doing a part time job, caring for my mother and maintaining the
house and everything else which life throws at you.
Maintaining my son's illness is very difficult but I am coping. I have to sacrifice to look after my son despite the
hardship.
I am also suffering from hearth condition, angina, bypass, arthritis and diabetes.
Constant anxiety about the future, my son is very ill, he will want to leave hospital one day, there is no
suitable provision for him, he will need supported housing with necessary care for medication but something
to do in the day. At present many sufferers spend days alone smoking and drinking.
I think you have done your best to help my brother, I am sorry to say he doesn't always comply, thanks, we
are ok.
I have 2 disabled persons, my wife is 63 and she is confined to a wheelchair since 1980, my daughter is 32
and suffers from severe epilepsy since birth, although both go to day centres with appointments etc I find if
difficult to have my own space.
Yes, I get very tired sometimes as I am in remission.
The longer this situation continues, the worse it is getting. I am feeling totally isolated and tied down,
depressed, my mother in law hasn't left the house in 5 years and depends on me for everything.
This role as a carer of my father in law is a real challenge, I think I am giving him the love and attention he
gave to my wife and my children. It is a very exhausting job, sometimes I only get 2hrs sleep per night
attending to him. I have a developed acute back pain myself because of physical effort. Also I am worried
about my health and pension since I had to quit my job to take care of him in full time hours.
Traveling on public transport with my son, shopping with him, finding suitable babysitters are all a big
challenge.
Page 43 of 74
It’s just a constant battle to receive any help and after a while you feel what’s the point, I might as well just get
on with it. As if you work to keep you sane, it goes against you so sometimes you feel like saying I won't work
and get everything financially and otherwise.
Caring role is a responsibility, it can be demanding and tiring, without the services provided I wouldn't have
been able to continue to care for my husband.
Can be demanding on my body/self if I am unwell as there isn't another person to look after her.
I was told by my doctor quite rightly in my opinion that I should not leave my husband with anyone I didn't
know personally. Fortunately I have two or three close friends who were very helpful over the last 3 years.
As I am disabled myself it gets very hard.
Yes I have a health problem and need more support for my son as he is getting older and I am facing more
Problems.
I work full time as a teaching assistant but the pay is very poor, while I'm at work my husband is creating
havoc at home. I receive no help other than when I go on holiday.
Age and arthritis make it difficult to cope sometimes.
Emotional stress.
Every time I decide to go out with the carers something happens at the last minute. Thank you for all your
help,
As well as support for my husband I also have two children as well as providing for their needs I have to try to
maintain a positive household. At times I feel totally mentally and physically drained.
Contact from Community Mental Health Team is slight. Our son is easy to look after by is too different to mix
with anyone outside the family, and can't work. We are both nearly 70.
It is difficult to cope when everything you try, even the simple things become a battle, she will not accept help
from anyone, even her daughters, she is terrified of doctors so I just do my best
Losing contact with old friends and loneliness.
Yes it affects my general life and stresses my depression
I had a heart attack last year and find caring more difficult but am trying to carry on.
At present I seem to have more problems than the person I care for. Severe back pain and arthritis which is
not in my feet making walking difficult.
Many but most people do not understand my wives condition and walk away.
The more you care the less services you receive.
It is unlikely that I will be able to continue in my caring role. This is because of limited service provision, the
stress around organising and managing my son’s provisions and logistics. Respite care is very difficult to
organise. I have little money and need to work so need more help to be able to do this.
It is mentally and physically exhausting and takes up almost all of my free time when I am not at work.
I have MS - sometimes its very difficult for me to give full care.
I really need more support.
We get by, very much on our own, in a crisis with the invaluable help of friendly neighbors and we hope to be
able to continue managing in this way.
Just worry.
Page 44 of 74
At the moment I feel stressed and totally unsupported by Merton.
It is very hard work.
At times I suffer depression due to my husband's stroke he has the inability to speak and walk properly.
I cannot leave the house for more than a couple of hours and even then I cannot relax in case something
happens to my husband while I am out.
The continual uncertainty about what will happen when we die or become to frail.
Due to my husband's medical condition with epilepsy and complications, i.e. poor memory, confusion, fits, I
find it very difficult coping with daily life and is very isolating.
It is not easy to care for a psychiatric patient all the time, because I am a widow and 74yrs of age and we are
together 24hrs a day every day with no break for 20yrs. It is difficult as you just have to agree with her for the
sake of peace.
Too many to write.
Sometimes it is depressing and I have great anxiety of becoming ill myself.
I am also disabled with MS and when I am ill my caring role has to fall on my daughters shoulders and she
then has 2 people to care for.
Being a carer results in not being able to do things spontaneously due to time restrictions and not being able
to leave the person needing care unattended. So outings have to be planned well ahead.
Stress, constant coping with problems and situations trying to find places to holiday - none (no information on
sites and equipment available - person to go with you so you get a break and its not just like working at home
coping. If it is too difficult, why go? Trying to find a trades person who can install disabled equipment or
ordinary shower repairs is stressful. Carers meetings are usually during the day when I work.
Caring for someone is often a hard thankless job that leaves you both mentally and physically exhausted.
We can only do the best we can because no one knows what’s around the corner. If we can't care for
someone who has cared for us for so long and who is unable to ask for help then the world is indeed a sad
place.
Ageing
We would like to be re-assured that as time passes the responsibilities for our son's life will be adequately be
picked up.
In view of my age, I am concerned about the situation that will arise after my death or in the event of my
physical incapacity, will my daughter receive the support she will require from social services if she is set up
in accommodation of her own?
Difficulties are arising as we get progressively older and it would help to be in a position to consider what
might come next. It is important for our well-being not that our son is able to continue to go to a day centre
suitable for him and that is happy, thus giving us freedom from physical caring and worry over his emotional
well being.
Being in late eighties myself wish you would understand.
Tiredness and frustration at not being able to do things together. My husband has had a triple bypass op and
deep vein thrombosis and is frequently at hospital. My son lives with us now and also has health problems.
A Single Point of Contact/Social Worker/Psychologist LBM, NHS Voluntary Sector Agencies
I feel that although G & I do not receive any service from LBM a social worker should be in regular contact
with me.
Page 45 of 74
I would like one point of contact who knows of my 'cared one' and me to whom I could discuss any aspect of
dealing with my 'cared one'. I often feel nobody knows or cares about me and the pressure of caring. Dealing
with sloppy administration and making sure everything runs smoothly is a full time job (and I already have a
full time job). The council's daily carers don't really 'care' and are so rushed.
My son has lots of MH issues but tries very hard with our support and love to get on with his life, he has a
small job and there is need of counselling I need a psychologist to help me deal with the situation.
Some suggestions made by OT's regarding the person being cared for cannot be believed. Could you check
their training and ensure it is up to current standards.
I work 2 days a week so I am not entitled to Carers allowance, yet I spent virtually all my time looking after my
father. I deal with everything including the paperwork, yet council dept. do not acknowledge my role and are
reluctant to talk to me about issues relating to my father. And their attitude is that we should accept whatever
service is provided, not good customer service.
At this present time we cope as a family, social work team, dual sensory team at Social Services are very
helpful. Problems with waiting for repair services to loop system - is only problem.
Support workers should have more training and experience of working with disabled people. Not sit back and
watch.
The difficulties people face in finding out where and how to get help need to be addressed. I find Open House
run by Merton Mind, a lifesaver. Carers meet other carers who are in the same position and can discuss
problems and ways of dealing with them. One doesn't feel so alone with an unsolvable problem. Carers lose
friends because they are unable to be socially active - then House provides support and a network of friends,
there should be more such please.
I have a lot to write or talk. Sometimes I've been hurt without any reason, some people who are working in
offices for disabled people and we have to contact with them, the way they treat us is so hurtful (I can prove
it). I think they need more training to do better job and be more thoughtful and polite.
Since the meals have stopped at the centre, I now have to make a packed lunch every day. This is just one
more job I'd hoped to be doing less as I got older.
My caring role would be much better if I had a choice of services that I could choose for my daughter. My
greatest frustration is the inflexibility and lack of services to compare and choose. For example, day centres,
JMC or nothing, respite: All Saints or nothing. Got the picture!! My daughter is 25, I have no intention of
sending her to respite with the elderly.
"The system for getting a comprehensive carers assessment and care plan has been diabolical, only get one
after complaining several times and they are not good enough.
I feel those who I care for have a right to a properly assessed care plan that does cater for whatever their
needs are in terms of what I can't do myself.
I find that the Children with Disabilities team (Social Services) are very sparing with the support they offer. If
they think you are getting support elsewhere they are quick to take back help they have offered. On one
occasion I told my social worker that we were worried that my husband may be made redundant. Instead of
sympathy he quickly said 'oh we will have to reduce your respite hours if he's going to be around more'. In
fact he would have been home more when the children were at school!
Patrick's manager, Roger is always very helpful to me and Patrick.
Yes, my husband needs a turning plate stand and social services turned me down, it would have been very
helpful if I had one.
We have been very pleased with Merton’s care services. We however would like Rachael to have a
nominated key worker, not just anyone on the duty team.
Social Services don't appear to want to get involved in post 16 transition process despite obligations.
Connexions are ineffective in regard to 'hidden' disabilities, heaping on us on carers even further. Merton
Page 46 of 74
education are too evasive of their responsibilities under the code of practice and accompanying law, for them
it is a game and budget cutting exercise but for families it is even more stress and workload.
Only that I understand I can be registered with Social Services to get support but this has not happened yet.
The only comment I would like to make is to ask if my son can be helped to get a job or a group of people like
him who have managed to be out of hospital for a long time, are able to be trained to learn something useful
for the community they live in. thankyou.
Perhaps a periodic visit to advise, my wife has been offered day centre care but up until now has not attended
owing to ill health.
We got problem with houses as well because this house is full of damp and we got 2 kids but no one had help
us with this problem.
The priority problem is space, we live in a studio flat big enough for one, we need a bigger flat so daily life is
easier and we then have our own space
There should be help if the main carers ill, you should not have to struggle on by yourself.
We have two carers but only one turns up regularly. They give the excuse they don't have enough carers to
come.
My Mother has dementia quite happy to just sit, she hasn't really much memory for conversation, I would like
to discuss the care agency with someone.
I would like to talk to someone about caring.
I asked for advice and help for access to the garden for my parents last April, they are still on the OT
assessment waiting list so for the whole summer they could only go in their garden safely when I could visit
and help them.
The sooner level access is fitted in my home the sooner my husband can live at ease and so will I.
Yes I would like an appointment with the head of this department due to you acting on false information
without giving me the chance to deny it I will bring evidence to confirm what I say. Also my wives time has
now been cut from 4hrs to 30mins. My Wife’s illness has got worse in 12 years not better.
I have difficulty in taking my wife to and from the car. There is a small green verge that my wife has to cross
over and if the kerb was lowered to the width size of a wheelchair it would be a great help to both of us.
All I want is more speech therapy to work with children one to one basic and occupation therapy too.
Although my son is now in full time care, I have him on weekends, I am considering giving up work to move
closer to him. My social worker is good and aware of the situation, I am happy to talk it though with them.
Merton have been very good and supportive from his education through to adult care.
At the moment I am capable of asking if I need anything, it would be nice if Social Services kept contact.
Someone came 2 years ago when I asked. I was offered respite care for a few days and someone to come in
twice a week to bath my husband. So far I have not made use of this. I am told that the case is closed after 2
months. Closed? When the condition is permanent.
Training
Would like more training as a carer. Services for under 3's are excellent, it is a lot harder to get help with over
5's. Was very pleased with courses offered on summer plus scheme. Database and Carers Support Merton
are very helpful.
My mother has the onset of dementia and it is very difficult to deal with. It would be of enormous help if there
was a course to attend for training on how to deal with attacks and how to deal with the after effects.
Some years ago a self-management of long-term health conditions course was held at the Wilson Hospital
which my wife attended and found helpful, but this was closed for some reason.
Page 47 of 74
A lot of problems with my cared for's behaviour which can be changed for the better through the influences of
friends, people he meets, someone taking an interest in his behaviour ('what will you tell the ladies?').
My experience so far as a carer is, the position can be very exhausting as times, especially as it is the first
time one is doing the job for this length of time. I think the service should enquire if the carer is experienced in
such a role if yes, ok, if no, the carer should be informed of what is expected and the services available.
Caring for Children
I love caring for my son who has epilepsy and global development delay, since starting nursery he has shown
more independence and showing what he wants by pointing it is so rewarding.
The responsibility on carers of children with disabilities means they become too reliant on us. They need to be
given opportunities to socialise for their own independence skills as well as for us. Kids First has been great
with regards to information.
As my son is now approaching adulthood and my husband and I am approaching pension age, we would like
very much to make out son as independent as possible. Suitable housing with support is what is very much
needed in Merton to allow people like out son to lead a more independent and fulfilled life.
Mostly residential problems, our daughter is not yet ready to leave home and needs a lot of emotional support
especially if she catches a minor illness (flu, cold etc) I get very tired.
When out daughter goes into full time care we would like her to go slowly over 2-3 months getting her used to
leaving home. It would be too traumatic to do this quickly for her.
For a lifelong carer, quality of life is very dependant on services provided for your son/daughter rather than
just for the carer. Knowledge that those services are good quality and are in the long term is essential and this
relates to day activities, respite, etc.
Its hard, looking after a special needs child, but what makes it worse is people's attitudes as he 'looks normal'
but doesn’t act like the average 10 year old. I just wish people would stop assuming I am a bad mum and he
is a naughty child.
Aspergers/Autism
The lack of provision for autistic people is very serious. Caring for them can be very demanding. It seem we
have to wait until they acquire severe mental health problems as well before they can even be registered,
never mind attract services.
It is very difficult to get any help or advice for adults with aspergers syndrome on the autistic spectrum, adults
with this condition are not acknowledged or helped by learning disability social services or mental health
social services.
Since age of 3 my son was diagnosed by LBM authorities and doctors as autistic. Not had a proper education,
school? LBM do not have any resources at all.
My son’s disability is often not fully realised as one that can have an impact on all family members lives.
Autism is a life long disability and this separates them from other children in terms of meeting needs and
understanding. Much more is needed in terms of providing the education and leisure facilities and put them
high on the list of priority for financial input.
Other Comments
I have not experienced any problems, we have lived together for 60 yrs and never parted.
I am happy caring for my wife’s needs.
I am happy and capable at the moment. I have another son and a daughter in law who visit often and help
around the house.
Page 48 of 74
I appreciate the help and support given to both my mother and me. Without it I could not work.
“Its is extremely difficult when someone has mental health problems as well as physical problems (my
daughter suffers from schizophrenia and multiple sclerosis, diagnosed in '94 & '96). She has always seen
consultants from each discipline separately who only seem to take account of their particular specialty. She
has seemed to fall down the middle for the last few years and it is only in the last few weeks when her
physical disability has got worse and she has had two spells in hospital that she has had more help - a carer
morning and evening and meals on wheels and the promise of someone to visit from Merton & Sutton
Crossroads.
Over the years of her illnesses, she has had voluntary jobs, attended chapel orchard day centre and then had
a key worker from the Wimbledon CMHT and a carer every two weeks for housework etc. As the only daily
carer, I have seen the effect of both illnesses on the whole person and have been at my wits end. You can't
imagine the relief I now feel to have other people involved. Mascot was the first great help as she used to
crawl to the telephone to ring me when she fell down and I was always on tender hooks waiting for a phone
call and rushing over to help her. The second biggest help was meals on wheels as she got to a stage where
she was unable to cope with standing in the kitchen to microwave the ready meals I bought or cooked for her.
Now she is receiving help from carers morning and evening I have felt such relief in the last two weeks.
Although the MS is now secondary progressive and she needs a wheelchair when I take her out, I just feel
grateful that she is getting the help she now needs and is being assessed for more suitable accommodation.
As an adult who is lucky enough to have been diagnosed (not an easy task) with ADHD and thank god for the
medication, I would like to point out that marriage breakdowns are very common especially if I am the female
part of the couple. Not only do I have to deal with this I also am having problems with housing, my son is my
main concern so school is important. Life is not easy for him and I pray we are both ok.
We need more help and consideration, more outings in the afternoons please.
Been caring for 15 year, no help wanted.
It’s hard and I appreciate all those who do help, thank-you everyone.
Happy at the moment we do not know if we will require support in future years.
I feel that we make a huge contribution to the community and save the NHS a lot of money.
I do not have a problem caring for my son, it is a pleasure.
Find it very rewarding as my son has improved and is more stable.
.
None because I am a retired nurse so I look after my husband.
As we do not receive any benefits I do not think we are entitled to any of the above. My mother would not
entertain any 'interference' anyway.
My mother will only accept care and help from me.
At the moment I can manage to look after my husband. Only assistance needed is for him to have a shave
twice a week. That service is very satisfactory.
Both the day centre and home care provide an excellent service which enables my mother to continue to live
at home.
My partner cared for me when I was down, I will do the same fore her just as long as I can because she is my
everything.
I don't feel that I am a 'carer' not something I feel applies to me.
Page 49 of 74
Section Two - Carers Conference 12 November 2007
Carers Conference – 12 November 2007
Welcome
By Councilor Margaret Brierly, Cabinet Member for Health and Adult Services
Presentations from carers
Who care for:








Older People – appendix 1
People with Learning Disabilities – appendix 2
People with Physical Disabilities and Sensory Impairments – appendix 3
Children with Disabilities - appendix 4
People with Substance Misuse concerns - appendix 5
People with Mental Health concerns - appendix 6
Young Carers - appendix 7
Former Carers - appendix 8
Comments:






Carers are paid little; do council and other Government bodies help
lobby the Government to raise this amount?
Why should a benefit be taxed?
GP – to clarify, is looking at a new deal for carers – large national
survey, they have agreed to increase the carers allowance by a small
amount. Check on carers website, new deal is developing services for
carers nationally; our local survey results will hopefully feed into national
plan.
Pressure is from voluntary organisation to increase services and
allowance.
MB – acknowledges you loose it at 60 and they lobby to try and stop
that.
HG – outlines how voluntary organisations, Merton & Sutton
Crossroads, CSM etc is helping to lobby the government.
Presentation on ‘Carers Needs Survey – A New Deal for
Carers’
The Results

2,896 surveys were sent out to carers known to LBM and voluntary
agencies in Merton.
 446 (16%) were returned.
 For the purposes of the survey those cared for are divided into:
- Older People (over 65)
- Adults (18–65), and
- Children (0–18)
Note: For specific results please see Survey report.
Page 50 of 74
Comments

























Re: survey – were we surprised with the results.
GP - was surprised at some, but was pleasantly surprised at how it so
closely fitted into the national results mirrored.
GP current strategy is a new strategy building on the old strategy, has
been around since 2000 and has moved on, many more things for
carers now.
How does someone apply for Carers Act Assessment?
GP - must phone social worker.
What if the person doesn’t have a social worker, can you access any?
Does it include mental health? Some people have been informed if they
have been discharged from CMHT.
Through the GP (Doctor) will need to make recommendation in that
case.
Congrats on the survey. Did you think about looking at results through
disability rather than age categories?
GP - We have picked out the government matches, the report
presented today was a draft to give a snapshot, please keep in mind
this was a joint project and the voluntary section has put in a lot of work.
Your statistical data is from just the survey, do you have the census info
of carers as a whole.
Colin – Carers 2003 report, extracted data from the census, there are
discrepancies, e.g. 57% in our survey said of working age, and in
census 70% were of working age – raises concerns.
Why people didn’t respond to survey – do you think it is because of
previous experience. You should put into survey to encourage people to
fill it in.
GP – agreed was disappointed and take on board comments.
Is there any way the cared for person can access anyone to get help
when the carer is reluctant and the care is spasmodic.
GP – individual case, and personal issue so contact social worker
Re % adult carers didn’t add up.
KC & GP – survey results presented were a best fit – not all stats are
exact.
BME, because of the stigma attached to Asian people may be why
people didn’t fill out the survey and why there is a low turn out from
these people.
Carers grant questions asked, everyone is expecting to be cut, I hope
there will be consultation.
GP - doesn’t know what the Government is going to allocate for the
grant, agrees there should be consultation.
Colin – this is a major concern for the partnership and have requested a
meeting to discuss this with the appropriate authority.
A comment was made re a meeting with Terry Hutt and actual figures of
cuts suggested.
Merton mind was brought up re: funding – Cumberland day centre is
going to be reduced – Why? As they do lots of great work.
GP - can’t answer the question as he is not part of the decision making
process.
Page 51 of 74
Workshops, the next steps
Imagine you are service providers, based on all the presentations you have
seen, what do you think should happen over the next 4 years?
How should the service be provided re:
 Respite
 Info and advice
 Training and employment
 Is there something that we need to do for the Black, Asian and Minority
Ethnic (BAME) community?
Facilitators –
 Group One: Geoff Patmore and Karen Harrod
 Group Two Barbara Price and Colin Shurrock
Group One – discussion notes.
Specific areas:
Respite care, BAME; employment and training.
Respite care










Flexibility and respite is having a choice, when you need it you should
access it. How do we achieve that?
Carer need choice so should be given the financial power and then can
choose what they use the money on so they get it when they need it.
Comes down to choice, i.e. what is available out there.
Survey on one main service for respite for learning, most people didn’t
know it was there – so not necessarily about an individual budget or
buying care it has to be out there and the range of need is very different
for various groups.
So effectively want more providers out there and a better choice. What
do we need more of? Service at home frees the carer knowing they are
safe in their own environment. Some can’t cope in external
environment.
There needs to be flexibility with care for special things like trips out,
maybe an extra hour of care or change times.
Weekend check calls not available if I want to go away on the weekend,
are very useful during the week when on holidays.
The ability to do something spontaneously but cannot because
organising spot care is too difficult.
As service providers, how do we make it easier to provide carers
assessments?
There are adequate carers assessments provided, but not enough
services, getting better at accessing resources, but not enough out
there.
It is suggested that there should be spot care worked into their carers
rounds so there is a free spot available that can be booked in the
Page 52 of 74




















morning by a family carer. Could Merton & Sutton Crossroads look into
this?
Cumberland day centre gives a lot of support but is very specific.
Providers find it very difficult to be as flexible as carers need, but are
trying. The communication between providers and carers is essential.
Flexibility is great, but they need the quality and sometimes that is
there, resources are being wasted due to people not trusting the
services.
Pilot schemes have been run for different services e.g. day service, but
the take up is very poor, or slow.
Respite care for the mentally ill is needed but is difficult because the
mentally ill person needs to trust, and that takes time – so you need
continuity of staff etc.
As a service provider what should they do to ensure quality?
LD are re-drawing their respite care services, doing a specification to
get new providers etc, we are looking for carers who want to be involved
in contributing to this.
There needs to be a range of respite, some people like range of people
come to the home, sometimes better to go out and get it.
Carers need to be careful about drawing a line between what you need
and what your cared for need.
Some social workers are helpful, some are very un-helpful and
sometimes you feel bad for asking.
Carers assessments don’t happen very often – and it is not expected
you need one (i.e. after 3 years), which is laughable, as things have
changed. The standard is you should have one every year.
Carers need to ask for carers assessment and not take no for answer if
it is needed.
The judgment for what service you need lies with the socially worker
legally during the carers assessment.
You need to trust the social worker; it would be better if you knew
someone
Respite is very expensive, should be free.
It is free for the carer, but sometimes the cared for needs to pay a
charge for service.
It would be useful to have a document that lays out how you qualify for
carers so they understand and know what their entitlements are.
The point of the assessment is to look at eligibility to be entitled to
particular services, we can’t send out information but you may not be
able to access this.
You can challenge the assessment if you think it is not good enough,
and agencies like Carers Support Merton can act as an advocate on
your part to help challenge this.
Its like you need a liaison officer who can find out all the answers and
go between, like CCN.
Information and BAME

So much around but still people don’t know, may be when you
specifically need it, where do you go?
Page 53 of 74



















Internet is useful, access is difficult, but carers can ask friends, family,
library for help to access the good info online.
Holiday service with social services is useful.
Carers centre in Sutton has everything for carers, all voluntary services,
and what you need.
What do we need to do about the diverse communities in Merton, how
can we get through to them.
We need someone to target their groups and communicate to them.
Finding a rep would be very useful.
Nationally there is a BAME carers network, but still coming up with
same issues. We in Merton don’t specifically provide services and info
for specific groups e.g. Muslims etc.
Vestry hall would be a good place for a BAME carers resource area.
You need a specific multi lingual person who can communicate with
BAME carers, it would be more powerful and they would respond. If an
English person went they wouldn’t respond.
Need a bank of people, not just one person.
There are people who are multi lingual who can translate are available
but they do not have the experience or knowledge of carers issues.
Is a large piece of work looking into what the BAME community needs?
Should be integrated not an individual resource.
LD front, 3 yrs ago commissioned a report needs for ethnic minority in
Merton, overall they wanted was exactly what everyone else wanted were communication issues but generally the same.
Why aren’t people filling them out, can’t answer it?
There are cultural problems in BAME, a stigma around giving birth to a
child with a disability, is more acceptable if the person is older.
Info available, but no one understands some specific conditions so
respite is difficult to get. Some people don’t know about the condition,
and carer has to give info on the condition. Services need to research
rarer conditions so they can understand and help the carer with their
needs. Is very stressful, but Merton & Sutton Crossroads is wonderful,
good for conversation.
Need to be support groups for carers to share information and just
somewhere to talk.
As a provider we have backtracked sending things to GP’s as they don’t
respond, we had an open day, 36 were invited but none turned up. We
think that it goes back to GP’s not understanding and not willing.
Info needs to be in plain English.
Employment and training


How do we want to assist carers?
There has to be flexible working practices from the employer, there
needs to be sensitivity from employers.
 Coming back into work is very difficult, you can get assess to see if you
would be better off working or not.
 The government is looking into carers allowance as paid to you
because you are ‘working’ as a carer.
 There are people who come in to help you get back in to the workforce,
but often they can see your situation is too difficult to work – so all
Page 54 of 74








you’ve had is a visitor who comes in for a chat and confirms what you
already knew.
Interesting report suggesting employers provide part of their wage as
tax-free care vouchers for day care etc.
Ex-carers who spend whole life caring are unskilled and too scared to
go out and find work/training etc.
Carers are skilled in caring so can find employment as a carer if they
wish to.
Confidence building skills, assertiveness etc training can help carers –
some new courses are available.
What happens when you are over 60 and no one will employ or train
you?
For anyone to work (e.g. caring for someone with learning disability),
there needs to be fantastic day services to be able to continue to work.
Self-employment is possible.
When the cared for passes away, they lose all their payments and
forced to look for work straight away.
Group Two – discussion notes
Specific areas:
Respite care; information and advice and employment and training
Respite care






Home care was the main requirement – but who wants what? Different
groups need different things. For example, day centres are not for all.
Respite care should be of a minimum quality – meaningful amount of
time and quality of the care received. Quality staff is critical. Each
agency is CSCI audited, among others, which guarantees a level of
quality.
Continuity is important – the carer should be matched to the clients
need. There are different needs within service groups. Respite should
be a good experience for the carer AND the cared-for. The carer MUST
trust the worker for this to happen.
Are holidays appropriate? Agency staff ARE available – carers may
wish to utilise the direct payments money for holidays. Possibility of
days out together, taking the care worker? There are transport issues.
Merton Transport is very expensive (pick-up runs were highlighted as
being ‘cruel’ to the people who were last off – toileting problems) and
public transport is not ideal.
Day centres are over-crowded and need a better staff to client ratio.
People need choices – clubs so they can socialise and have their
independence. Important for children AND adults. Play-schemes for
children during school holidays were important.
Emergency respite was needed, as was the possibility of care over
bank holidays.
Page 55 of 74
Information and advice








Should advertisements be bigger? Made more accessible?
Doctors/GP’s/Nurses/Pharmacists need information packs and they
need to know it’s THEIR responsibility to tell carers what is available.
Mini-leaflet (business cards?) to advertise phone numbers.
Dedicated signposting team for talking through services, and giving
useful advice. Including home visiting for BAME.
Again, quality is needed and the continuity needs to be advertised
more.
Online advertising? Not everyone has internet access and especially
not the older carers. Laptop training is available but it was recognised
that this would not be appropriate for everyone.
Is a carer’s register feasible? People may be noted as carers during
hospital discharge.
There IS a variety of information out there but the difficulty is finding it.
Employment and training

Bigger companies offer flexi time for carers (especially flexible for carers
of children). Smaller companies find it harder to justify.
 Day care for the cared-for, while the carer works? Or support whilst
training to return to work. Carers lose confidence when job searching.
 Is there training in how to care for the condition from which the cared-for
is suffering? Difficulties include knowing what to say and managing the
stress they feel whilst caring.
Other matters



Carers feel isolated and are prone to anxiety.
They have little financial wellbeing and feel they have very little support.
Some are worried about pensions, as they are not ‘topping them up’, if
they’re not working and just caring.
 Many carers need their confidence rebuilding as caring has become
their ‘life’ and if/when it ends, they feel lost.
Report back from workshops
Themes raised included; quality in service delivery, trust in workers and
services, information through a variety of channels, standardisation of
information, work with Black, Asian and Minority Ethnic (BAME) communities,
some services need to be independent of social services, the need for a
carers register especially in General Practitioner (GP) offices, employers need
to understand, carers need training in how to care, isolation of carers and
need for various levels of support e.g. peer, group etc.
Page 56 of 74
Group One – Summary
Employment
 Flexible working practices
 Employer provide vouchers to enable carer to work
 Caring skills can create employment
 Barriers: benefit system
Respite
 Unplanned care (non emergency)
 Control – direct payments, individual budgets
 Choice/flexibility
 Specific Carer Assessment Officer’s per discipline
 Resources – increase/respite homecare/services, Crossroads, night
service and weekend care
 Specification for respite care drawn up by carers
 Annual reviews of carers act assessment
Information and BAME
 Plain English
 Internet access can be difficult for some
 Carers centre - focal point.
 Increase BAME awareness a link or focal point/resource
 Ensure adequate information on cared for needs understanding
 Groups of carers sharing information
 GPs more proactive
Group Two- Summary
Respite
 Choice, need to know who wants what different needs for different
service groups - different needs within groups
 Minimum quality – meaningful amounts of time, assurance of quality, know about the cared for
 Good experience for carer and cared for, need to trust the person who
will be caring
 Respite for holidays
 Quality day centre - good staff ratio
 Respite at home
 Days out together
 Emergency
 Adult; young people’s and children clubs
 Holiday provision – school holidays, play schemes
 Services to continue over Bank Holidays
 Transport
Information and advice
 Variety of channels
 Where to go – different needs at different times
Page 57 of 74






Principal agencies, part of their responsibilities to give initial info: GPs;
pharmacies; nurses; hospitals; voluntary agencies
Posters at: GPs, outpatients, chemist
All services should have contact card
Specialist sign posters to take person through the system (BAME)
Hospital discharge carers register
Assessment of whether carer capable on discharge
Employment
 Smaller employers
 Getting through to employers their responsibilities
 Information about flexible working
 Stigma of being a carer
 Care to support the carer to work.
 Flexibility needs to take account of holidays
Training
 Different needs at different times
 Training in how to care
 Understanding the condition and how to manage it
 How to manage own stress
 Support while training – flexibility
 Former carers – confidence
Other matters
 Isolation – anxiety
 Financial well-being
 Pensions
 Confidence – peer support
 Health problems
Additional comments:

A carer cannot stop being an unpaid carer, once their loved one goes
into a care home. There is the financial side to deal with. The buying of
new clothes etc, and having to fee like a moaning monster when asking
the home about lost slippers, or ‘slipper’ and lost clothes, complaining
about bad quality and lack of food, and holding ones head high when
having to visit the home after complaining.

Agency carers have to have a 3 hrs break every 24 hrs, why does this
not apply to us.
Page 58 of 74
Appendix 1 - Older People
Report from Older People carers and carers subgroup members
This is a report is on series of consultations with carers of Older People made
especially for this conference.
The information here is from conversations between carers who attending
recent Older People’s carers’ subgroup, from an extensive email and phone
consultation carried out by carers themselves and from comments made by
carers of older people to the email and post based forum: The carers’ Voice.
Carers of Older People were asked to recall examples of good services or
practice by support staff (including Social Workers and Medical people) which
they felt have really helped.
It was clear most of the carers in these discussions had a lot of negative
experiences to report. However, recognition of these negative experiences
gave rise to some clear examples of what carers felt would help.
There were, nevertheless, several very good examples of really useful
support from some social workers;
Typically these social workers had a good knowledge of what it is like to be a
carer and were sympathetic, understanding and able to enhance their support
with timely information about other helpful services.
An example of this is when a Social Worker was able to direct a carer to
Merton MIND and the Cumberland which the carer has described as a “life
saver” for her – giving her someone able to listen to her for hours, which had
found a great help during the worst times that she had to cope with.
Some carers reported good support from pharmacies;
Typically those which collected repeat prescriptions from GP, delivered
medicines to the carers and patient’s home and packaged medication in easy
to use blister packs
Other examples of good support and practice that were noted included:









Several carers appreciated the support from Merton & Sutton Crossroads
Several carers similarly appreciated the support from Carers Support
Merton
One carer found an employee group particularly beneficial, especially in
coping with problems about lack of recognition at work
The Physio department for elderly people at the Nelson was commended
Support from Merton MIND
One carer reported a very good service from care workers from
Goldsborough Home Care
Eltandia Hall Nursing home (for respite care to the person being cared for)
One carer reported a very good service from Scholl foot care centre
The meals on wheels service
Page 59 of 74


Advocacy Partners
and
Day centres such as the Cumberland for the person being cared-for.
A common and persistent concern of carers in this consultation group was
about getting the right type of information with ease.
Many carers described a long, stressful and convoluted processes to get to
services they needed.
In one case a carer had to deal with several agencies to request a commode
and then get one which was available without a two day wait.
In summary:
Existing areas of support: (Merton & Sutton Crossroads, Day Centres etc.) are
all positive examples of good support and need extending.
However, one of the main problems is the attitudes sometimes experienced
by carers: lack of recognition and offer of information about support for the
carer.
Information about help from whatever direction needs to be emphasised and
freely and easily offered.
Good social workers can have a very beneficial effect; sometimes out of
proportion to their actual input. Sadly Bad Social Workers do the opposite,
only more so.
A better understanding of the problems of carers, not only practical but also of
the mental trauma involved, would be a very positive help to lower stress
levels.
If the outcome of the Strategy Plan is that existing negatives are able to be
changed to positives then surely all aspects and the day-to-day reality for
everyone concerned would be that bit better and the Strategy considered a
successful undertaking.
Page 60 of 74
Appendix 2 - People with Learning Disabilities
REPORT FROM CARERS OF ADULTS WITH A LEARNING DISABILITY
Who are we?
To put us in context - our group, which is open to any family carers of an adult
with a learning disability, has been meeting each month for over three years. We
are, inevitably, long-term carers – anyone joining the group will have already
been caring for a minimum of 18 years, and we found the range at our last
meeting to be between 20 and 49 years. Around 40% of Merton LD carers are
widowed, divorced or single, so cope alone, while nearly a third are over 65 years
old.
Inevitably over a lifetime of caring you go through different stages, so your needs
as a carer vary over time. Early on you may be juggling the needs of your son or
daughter with a learning disability with those of other children, but later on many
people inevitably find themselves caring for others as well - maybe frail, elderly
parents, a family member with mental health problems, or a disabled partner – so
need support in a variety of caring roles.
What do we need?
It’s actually sometimes quite difficult to get carers to think about their own needs,
and what would help to make their lives easier and more enjoyable. The first
thing nearly every carer says when asked ‘what do you want as a carer?’ is ‘good
quality services for my son/daughter’. Two reasons lie behind this reply – our
lives are inextricably linked with those of the people we’re caring for – so if day
services or transport arrangements, for example, aren’t working well, it affects the
quality of our lives too. We’ve tried to concentrate on services specifically for
carers here, but it’s often impossible to draw a clear line between the two.
A recurring theme in our group is the dream of being able to occasionally lead a
normal life. What this means, in practice, is simply having the ability to sometimes
do things other people take completely for granted – so how does this translate
into a need for services? We think the following things are crucial:
1. A range of good quality respite options – including breaks for holidays,
overnight care, evening care, weekend breaks etc. A particular need
highlighted was for an extended day option, when a service operating directly
after normal day activities would enable carers to go out for a day, attend a
hospital appointment, go to a meeting etc without having to constantly worry
about getting home in time. Current shorter days at day centres make this
even more necessary.
2. A source of good advice/support/information – absolutely critical,
particularly for carers coping alone. Having someone to talk to, offer very
practical help, or find ways to solve problems can make the difference
between coping and not coping. And it’s important that the person fulfilling
that role is trusted, approachable, and knowledgeable.
Page 61 of 74
3. The chance (particularly for younger carers) to have a job, with working
arrangements flexible enough to cater for their needs as carers. (And, of
course, the necessary day care for their son or daughter to make this
possible.)
4. The chance to enjoy leisure activities, while not having to worry about the
person they care for.
5. Ways to get together with other people in a similar situation – both for
sharing information and for mutual support.
6. Being able to have a comprehensive assessment of needs carried out that
results in an action plan and an improvement in their quality of life.
7. And, very importantly, a named social worker who they can contact when
problems occur, and who really knows them and the person they care for.
What services do we think are good?
What’s around at the moment that our carers find really helpful? Good day
services, where they exist, are obviously the bedrock on which our lives are built,
but putting them to one side for the moment, the things carers most value at
present are:

Having two Mencap Carers Community Advisers they know they can turn to
for help and advice - specific examples given include practical help with filling
in a complicated form, organizing a holiday plus funding for a son with a
learning disability, sorting out problems with a financial assessment, acting as
a link with social services, and sourcing funding for much needed equipment.

Being able to get together with other carers one Friday a month for a range of
enjoyable activities and outings organized by Mencap.

Having a thorough, sensitive carer’s assessment carried out by a CCA.

Receiving a direct payment that enables a carer to take part in an activity that
would otherwise not be possible.

Having an excellent, ongoing social worker to help throughout transition.

Some existing respite options – for example, a carer from Merton & Sutton
Crossroads, and (for the few still covered by the scheme) Merton Home from
Home.

Services that provide both an excellent quality of activity for the person cared
for, plus respite for the carer – including the Merton Community Outreach
Team, and the Mencap Transitions Club on a Saturday.
A comparison of what is currently available and what carers of an adult with a
learning disability feel is needed to enable them to have a decent quality of life
should hopefully highlight any gaps in existing services.
Page 62 of 74
Appendix 3 – People with Physical Disabilities and Sensory
Impairments
A report from carers of people with Physical Disabilities and Sensory
Impairments (PDSI)
Carers who came to the last Carers Subgroup Meeting were asked to discuss
any services which have or might have helped them.
This was so that we can give information to the Carer’s conference from the
point of view of carers and former carers of people with physical disabilities or
sensory impairment.
Some of the carers at this meeting have been looking after the person they
care-for for over 10 years.
As a group we are not representatives of all carers of PDSI in Merton,
however, many of us could recall experiences told to us by other carers as
well as drawing from our own experiences.
What we found:
As carers we all experienced significant periods of time before finding support
of any type as carers. Sometimes we had to provide care with no help for
several years before discovering any support for ourselves.
Of the services available:
The opportunity to discuss our situations in detail and without censorship was
generally very welcome. We all felt there were real benefits to being able to
express emotions including frustration and irritation – in particular in releasing
stress and in helping us to cope better.
In one case - one carer told us about how finding out about how an illness
was affecting the person being cared for had stopped the carer seeking
divorce.
Carers felt Support Groups for specific illnesses and safe places for the
cared-for to go were very useful - as these allowed carers some respite at
home - confident in the knowledge that these were places the person they
care-for is willing to go; and would be happy, safe and well looked after.
The All Saints Centre was given as a specific example of this. All of us were
grateful for the quality and range of support and facilities that have been
available at the centre in the past.
Whilst no one could recall an active group, a group for younger adults with
physical disabilities (aged up to about 40) was seen as a good idea; being
attractive to the younger people being cared-for.
Also of use:
Page 63 of 74

Discount prices for entertainment for carers accompanying wheelchair
users
For example the “pusher goes free” offer in many theatres
 Discounts on public transport for people on benefits
 Free prescriptions and glasses for people on benefits
 Grants for funds for holidays
Which can help with the extra costs of having to book disable – accessible
resorts
 Sympathy and understanding from support staff; social workers, health
care workers and care workers
 Carers also benefited from the motability scheme applied to the person
they cared for.
and
 External support and contact from support workers, family and friends
coming to the carers home gave some welcome respite and helps alleviate
loneliness
One carer was appreciative of the support from the carers in work service exploring getting back into work as an opportunity to tackle isolation, boredom
and stagnation. Unfortunately the carer found the limits of the poverty trap
made it too costly to follow up.
Some carers recalled how useful having care-workers running errands had
been. For example going to collect medicines or doing a quick trip to the local
shops.
It was noted that care-works were no longer able to offer this help anymore.
It should be noted that many carers at our discussion expressed a real lack of
recognition and support, even after having carer’s assessments which
acknowledged ‘acute needs’ and ‘significant levels of risk’.
In conclusion
Carers in this group would like to urge continued support for carers to get
together, to have safe, entertaining and attractive places for their cared-for to
go to and have a better opportunity to pull themselves out of financial poverty.
Page 64 of 74
Appendix 4 - Children with Disabilities
Report to Carers Conference
Monday, 12th November 2007
Who are Kids First? Brief intro……
What is different about PARENT carers? Parent carers are unique in so far
as a large part of their challenge is obtaining and retaining the correct,
appropriate schooling for their children. The SEN system is complex and often
requires significant amounts of stressful input from parents/carers. Parent
carers also have to bring up other children whilst being a carer so the caring
role occurs at a time of their life in which family running costs are high. At the
same time, parent carers often have to sacrifice the opportunity to work at the
time when their earning potential and skill development would have been
increasing towards it peak.
Many different parent carers with different needs: Parent carers belong to
many different groups whose caring needs are diverse. The list includes
children with severe physical disabilities, severe medical needs, learning
disability including ASD and PMLD, communication needs, sensory
impairments and children with terminal conditions requiring palliative care.
Different needs but some common features: It is impossible to say that all
of these parent groups need the same service or level of support. However,
none can realistically succeed without additional intervention. Parent carers
inevitably suffer from a feeling of isolation due to constraints upon normal
family life, not fitting in and limitations on their freedom and mobility. The
ability to share experiences with other parent carers offers emotional support
and limits the effects of isolation.
Disability affects the whole family: All parent carers have to endure the
emotional impact of disability and some live with the possibility that they could
lose their child at any moment. Often then, the disabled child comes first at
the expense of siblings so it important to consider the needs of the whole
family, young carers and siblings as well as parents and carers.
Parent carers needs: Initially, the PCT is critical in supporting carers at the
time of diagnosis or after the birth of a child. The ability of the PCT to initiate
joined-up service provision such as early years key workers, portage or good
home care support from hospital can make a critical difference to families.
Page 65 of 74
Health services need to sign-post support even if not providing it from within
the PCT. They need to encourage families to add children to the local
disability database to access good, complete information about statutory and
non-statutory services including support groups so that they can meet other
similar parents - this sign-posting is starting to happen but it could be
developed much more.
The PCT also needs to consider parent carers when children have complex
medical/physical needs: many parents have to miss work regularly to take
their children out of school as many consultants do not have flexible
appointment times in school holidays or after 4pm. Parents often need to visit
numerous consultants at different hospitals each year and repeat medical
information many, many times.
As well as good health care, parent carers seek out information about local
services for their children but of, course, packets of information are not helpful
by themselves, good informed choices need to be made and sharing
experiences with others facilitates this process. Sometimes, parents require
specialist parenting skills, such as behaviour management techniques and
also coping mechanisms. Parent carers spend a lot of time organising
schooling but also specialist or inclusive play and leisure opportunities which
takes time. Of course, parent carers themselves need respite breaks to be
with their other children, to catch up on sleep (which is extremely important to
protect their own physical and mental health), to do shopping, DIY and
perhaps to use this time to educate themselves about their child’s disability or
to attend training and skills courses. It must not be forgotten though that
children also need respite breaks from their parents – apart from the
annoyance of being with the same adult all the time (!), they need to be able
to accept care from others and develop some taste for independence.
Our parent forum tries to work with health professionals so that parent carers
are understood. For example, CAMHS now refers parents to our group for
emotional support, information and training after their children have been
diagnosed with a disabling condition. We delivered our DVD on autism in
young children to school nurses and health visitors across the whole PCT, all
of whom have good understanding themselves of this condition, and were
received very positively.
Special issues for ASD & behaviour: A major challenge for parent carers is
behaviour management. Of the teenaged children who eventually move into
residential care, a large proportion are those with Aspergers Syndrome and
other communication or social communication disorders whose behaviour
eventually threatens to break up families and who have a high incidence of
depression, anti-social behaviour and sometimes suicide. What parent carers
need in these cases is preventative work early on including expert parenting
skills training – these services are underdeveloped at the current time.
Specialist respite services such as Brightwell, Merton Mencap clubs and
projects, and the Merton & Sutton Crossroads clubs are good, and indeed
essential, services for many parents but are not suitable for the more able
such as Aspergers.
A positive development is the attention now being given to holistic transition
services where the intention is to manage the move to adulthood from both
the carer’s and young person’s perspective.
Page 66 of 74
Cause for optimism: We do have opportunities to highlight some of the
needs of parent carers within initiatives such as Aiming High for Disabled
Children, Merton’s Parenting Strategy, the project looking at Integration of
Services and Merton’s Play Strategy. We are optimistic in these areas
because parents are becoming more and more engaged in service
development. We note that the role and operation of new children’s centres is
not yet clear enough for us to make a comment on whether these will
significantly support parent carers and act as focal points for service
provision.
Continuing problems: Unfortunately there is less optimism surrounding
some of the other major challenges for parent carers such as special
education provision, disability discrimination at school and access to fully
inclusive play and leisure activities.
What can a parent forum achieve? Parents of disabled children cannot live
successfully and achieve good outcomes for children on their own. They need
good services, they need good support from other parents and they will be
more successful when engaged fully in local service development.
Merton Mencap, Kids First
The Wilson Hospital,
Cranmer Road, Mitcham
CR4 4TP
Tel: 0208 687 4644
Email: kids.first@swlondonmencap.nhs.uk
Merton Mencap, company limited by guarantee, no 5692213, registered in England & Wales,
registered office as above, registered charity no 1113444
Page 67 of 74
Appendix 5 - People with Substance Misuse concerns
Report from SMMB Carers and Carers subgroup members
This report is to inform the Drafting Team of the Merton Carers Strategy for
2008 – 2011
This information is taken from
A short consultation based on the Carers Need Survey by the MACS Project
(October 2007),
A discussion with Carers by Merton Community Drug Team (October and
November 2007)
Carers in the SMMB Carers subgroup (meetings March and May 2007)
and
From comments made by carers of people with substance misuse concerns to
the email and post based forum: The Carers’ Voice.
Figures from the Merton Drug and Alcohol Team (DAAT) tell us that there are
over 7,000 families affect by drugs and alcohol in the borough.
However, practice has demonstrated that there is a strong stigma associated
with this concern, to the point where many families attempt to cope with out
publicly acknowledging the concerns.
Whilst some carers are prepared to discuss their experiences in confidence,
very few are prepared to do so in public.
Services and Good Practice noted by carers
Counselling and emotional support Services
MACS counselling for family members mentioned specifically.
Information about support for carers
Services and assistance desired
Chance to be included in of for person being cared for treatment
More people to talk too / social events
Carers Assessments
Holidays
Better understanding by the public and the community as a whole
Dealing with stigma of concern
Coping with the cared-for (e.g. mood swings, fall out and violent behaviour)
Supporting de-tox and rehabilitation of the person being cared-for
Help supporting concerns about personal health & stress
Dealing with financial problems
Tackling isolations
Copying with stigma associated with the condition
Copying with extra domestic chores
Page 68 of 74
Appendix 6 - People with Mental Health concerns
A report from carers of people with Mental Health concerns
This is a report on a recent Mental Health Carers subgroup meeting.
We were asked to record experiences of good services they had received as
carers.
This is so that we can tell you about best practice we have experienced which
should be promoted in the new strategy.
In an hour long workshop we were able to recall 8 examples of really valuable
and useful support which we felt would be of significant benefit if delivered
consistently and effectively to all carers of people with Mental Health
concerns.
These were:
Regular visits from a highly capable and conscientious Community
Psychiatric Nurse (CPN)
One of our members was able to describe how a regular visit by a CPN (once
every three weeks) had a massive impact on the quality of life of the whole
family (as well as the patient).
The CPN was especially good in these areas:
 The CPN had a good rapport with both the patient and the family, there
was a strong feeling of trust
 Visits were consistent and regular and appointments were always kept on
time and as expected
 The CPN had a positive impact on the patient, helped to maintain his self
esteem, his sense of grounding and stability - which naturally had a
positive impact on the emotional well-being of the whole family
 The CPN was open to information from the carer
and
 Dealt with the whole family with compassion, dignity and respect.
It should be noted that when care of the patient was transferred to a different
Community Mental Health Team (CMHT) quality dropped and the patient and
family experienced rising levels of emotional distress and general stress.
It was also noted that no one else at the meeting had experienced anything
like this level of quality of service.
Recognition and respect from medical professionals
One carer was able to recall how members of the patient’s the Home care
Nursing Team (“Crisis and Home Treatment Team”) were open to listening to
the observations of the carer and used that information of improve their care
for the patient.
Page 69 of 74
They were also able to give some advice to the carer to improve the family’s
care of the patient and inevitably improve the family’s quality of life.
It should be noted that no one else was able to give a similar positive account.
In one case, information which the carer felt might have resulted in a review of
the patient’s medication was ignored.
Importantly: one carer recalled receiving help from a third party (who had a
professional clinical background) who was able to help the carer translate
their observations into clinical terminology – and thus gain the attention of the
medical team looking after the patient.
This example of medical advocacy was effective in getting recognition of
changes in the symptoms of the patient, which were otherwise being
overlooked.
Someone to talk to - Peer support and support groups
Almost all of us were able to recall how meeting other carers of people with
mental health concerns had been helpful.
Organisations such as Rethink and Carers Support Merton were
acknowledged for helping with this.
Typically sharing experiences with other carers helped with
 Improving caring skills and techniques
 Coping with the emotional stresses
 Tackling the isolation that dealing with a socially stigmatised condition
brings
and
 Giving hope to families
Getting a break – respite
A carer was able to recall how having a break from caring had a marked
positive impact on their ability to care, and in helping them stay healthy and
well.
Almost all members of the group acknowledged that having the opportunity for
a break was essential to their feel able to carry on caring.
It is important to have something to look forward to.
Day care centres
One carer was able to recall how the patient having access to a day centre
(in this case: Chapel Orchard) was particularly effective in enabling the carer
to get on with personal work and have a break.
The carer also observed that use of a day centre had a positive effect on the
recovery of the patient; helping the patient rebuild social skills and confidence
which was essential if the patient were to be able to cope independently as
well as with the family.
It was noted that when the day centre provision was shut down in 2003 the
carer lost the respite benefits of the placement, increasing the risk to the
Page 70 of 74
health and well being of the family, and the recovery of the patient had not
significantly improved.
Financial advice and support
One carer described receiving effective support in dealing with a benefits
claim. In this case a successful appeal against a decision to refuse Disability
Living Allowance (DLA).
It should be noted that the support was via a financial support worker based at
a drop-in centre in Sutton.
Carers Support Merton staff were able to confirm some carers had been
supported including acquiring funds for a holiday and assistance with benefit
applications.
Members acknowledged the Advice and Law centre service at Springfield,
however, no carers were able to recount being eligible for the service,
including the carer who benefited from the Sutton service.
Flexibility of work
One carer was able to describe how being flexible in her job helped her in the
care of the patient. The carer described being able to nip home or take early
lunch breaks had enable her to deal with ‘emergencies’ with the person she
cares for.
In more than one example she described having to take time from work to
attend a problem the patient was having with a case-worker.
The carer who gave this example, tended to claim personal illness as a
reason for taking time off, rather than say the true reason why time was
needed.
It should be noted that none of us (who are in paid employment) felt able to
tell our employers about our caring responsibilities.
Control and Choice
Although, none of us could give an example, it was noted that having greater
control and choice in the care of both the patient and family would be of real
benefit.
We were able to recount many occasions where a medical professional, such
as a CPN was clearly failing to build rapport with the patient and carer - which
has a negative affect on the recovery of the patient.
Carers recognise that no one can ‘get on’ with everyone; however, information
about observed barriers to rapport had apparently been ignored. One
example given described a serious mismatch in placement which failed to
take account some powerful associations held by the patient. This resulted in
a patient who was more agitated and increased the stress experiences by that
family.
Page 71 of 74
Appendix 7 - Young Carers
Evaluation of Survey on Young Carers aged 8+
For Carers Conference
Young Carers were interviewed by each other and asked a set amount of
questions. They recorded each other’s answers.
Amount of Young Carers Interviewed:
37
Summary of Results
Gender breakdown
Male =
54 % Female =
46%
Family Situation Breakdown
Lone Parent family =
54%
Two parent family =
41%
Living with relatives =
5%
Only child =
27%
Siblings =
73%
Only child with a lone parent =
19%
Main caring responsibilities highlighted:
Cleaning, cooking, medication, shopping, comforting when upset/sad, helping
with siblings, getting cared for dressed.
Spare time activities breakdown: (please note some YCs noted more than
one activity)
Sports =
Computer/games consoles =
Clubs =
Home =
TV =
Socialising =
None =
57%
32%
11%
16%
14%
16%
3%
Percentage of YCs stating home based activities only in spare time = 24%
How Merton Council can help YC’s families more:
More playgrounds, install central heating, more disabled parking spaces, help
families go out together, improve area, help with shopping, more trips, make
mum go out more, more support, time for themselves, home schooling,
money, people to do the housework, collect bins on time, bigger house.
Page 72 of 74
Appendix 8 - Former Carers
Report for Carers Conference on the 12th November from Former Carers
Introduction
The purpose of this report is to provide the Carers conference with information about
areas of service or support that former carers within the borough found particularly
useful or supportive during their years as carers and when they stopped being
carers. It was recognised by the group of former carers, who discussed this issue
and provided these comments that:
The group were not representing former carers but were simply bringing their own
experiences forward as a useful contribution
and
that for the purposes of this report those carers whose cared-for were in either a
nursing home or residential home were included in the definition of former carer,
whilst recognising that they were still undertaking on a daily basis personal tasks,
financial support and social and emotional support for their cared for.
Main findings
As carers the entire group had found the transition to being a former carer either
through bereavement or the need for their carer to be admitted to residential or
nursing home care, a traumatic and difficult time. What was found to be most
supportive were:









Organisations that provided support during the pre and post bereavement
period
Specific Bereavement services which could be provided from day one up to
two years
Peer Group support
Sound financial advice
Formal acknowledgement of the death of the cared for by the services
involved
Information as to what to do with equipment and medicines no longer in use
The supportive and caring way that the news of the death of a loved one is
conveyed particularly if unexpected
Support groups specifically for former carers
Recognition and inclusion as part of the caring team by all agencies
particularly residential homes
Specific examples of good practice that were given during the meeting
included:


The post bereavement support given by St Raphael’s Hospice: staff had called
the carer at regular intervals for the first six months after the person she cared
for had died to ensure that she was alright
The support and help given from a carers GP: the carers GP had provided
much the same service as St Raphael’s, calling regularly to see that the carer
was OK
Page 73 of 74











Bereavement Counselling from the Bereavement Service: Carers had found
this particularly helpful although sometimes difficult to arrange. It was noted
that counselling can be needed for up to 18 months to 2 years post end of life
The Next Step programme run by Merton Mind: this programme brought
together people in the same situation in a non judgemental and non
threatening way
CSM’s former carers programmes which had helped the carers move on as
well as cope with the after effects of caring
Merton & Sutton Crossroad’s former carers group: again which had supported
a small group of former carers as part of a larger research project
Sound financial advice provided by the Royal Marsden Hospital about
benefits, which stop once caring finishes, and information about council tax
etc.
Benefits advice from the Pension service and LBM’s home visiting team who
were able to make home visits to provide advice and support
Care workers personally acknowledging the death of the cared for and on
occasion attending the funeral: recognition of the cared for's death from
services which had been closely involved in their care, sometimes for many
years was greatly appreciated and found to be very supportive
A carers GP personally clearing out all the old medicine alleviated the
problems experienced by many carers of what to do with left over medication
Support from the police when informing someone of the death of the cared for,
in particular the time taken to stay with the family waiting for them to absorb
the news, eased a stressful time which in other carers circumstances had
added to their burden by the insensitive way this news was imparted
Specific support from the Motor Neurone Disease Society for former carers
allowing the carers to stay in membership and attend support groups
Recognition from a specific residential home of the carer as part of the care
team which had made her feel that she was working as part of a team of caring
people
Not all of the carers present had had experience of this good practice but all
recognised the value and benefit that this help would have provided them. The group
were concerned that often this help and support is very dependent on the good will of
those providing it and it was felt that a lot of distress, financial problems and personal
trauma would be avoided if these examples of good support were delivered
consistently and effectively to all former carers.
Conclusion
Losing your cared for whether through bereavement or because they have to be
admitted to a residential or nursing home is a traumatic time. It can take many years
for some carers to adjust to the alteration in their status and come to terms with this
change. There is good practice being undertaken in the community to support former
carers but how carers obtain information about it is patchy, the services provided are
often not recognised as part of service provision and is often dependent on the
individual’s compassion in providing it.
This group would recommend that the carers strategy recognises the needs of former
carers and puts in place services that will provide pre and post bereavement support,
including counselling, peer group support for former carers, systems in agencies that
officially recognise the cared for’s death, clearer information and advice on benefits
and financial support available. The provision of these services can and does
improve former carers mental well-being, their physical health and economic
situation.
Page 74 of 74