Carer Report, January 2012
How we got carers views:
The reference group’s work on the carer action plan identified the
areas where the group needed to consult with other carers. These
were then included in the new design of the telephone consultation.
Volunteers recieved training in the newdesign and made dozens of
attempted calls to local carers. 22 carers took part in the consultation.
Their answers were then taken to the reference group, who
discussed the findings and identified the following main themes /
issues.
As usual we will send a full report, with the Board’s responses to the
carers that took part and upload it to the Carers’ Support Centre’s
website.
HEALTH
Carer Identification and support by health staff
12 out of 21 carers said they had never been asked if they were a
carer or offered information to support them as a carer by a GP /
hospital staff member. 9 out of 21 had been identified as carer or
offered information. People were by far most likely to have been
identified as a carer by their GP, followed by a hospital consultant,
nurse and Learning difficulty specialist.
What targets are there for identifying carers in GP’s or
hospitals locally and are they being reached?
Experiences of health services
The feedback about people’s experiences of health services was
overwhelmingly positive. GP’s supporting and advocating for families
was particularly important to carers and families of people with
learning difficulties:
‘GP has recently written to Social Services about carer’s poor health.
Is requesting some respite. It takes 2 to lift her and parents are
feeling the strain.’
The reference group felt some GP’s need more training in how to
work with people with learning difficulties and their carers. Several
carers did not feel listened to or recognised by health professionals:
‘As a carer you feel you are not included. They talk to my daughter
and don’t consider my opinion.’
‘…they [GP’s] don’t always fully understand what you are going
through.’
However some carers felt that GP’s ‘cannot be expected to be social
workers to families as well’. They felt that GP’s should be supported
by other professionals to offer the more general support, information
and advice which improves the wellbeing of people with learning
difficulties and their families, that they do not have time to do.
Could GP surgeries have a learning difficulty lead, who has
some specialist knowledge, families can talk to and can
advocate on behalf of people with learning difficulties and or
their carers?
DAY CARE / SUPPORT SERVICES
Many people were happy with the day services they were
receiving:
‘We use Blackhorse, excellent services’
‘Filton College is excellent. They transport her in her wheelchair
themselves, bring her home for lunch & toileting and then back again.
Daughter-in-law is her carer and attends college with her.’
Experiences of people going through day service closures:
Some of the group discussed the experiences of the people they care
for who attend a day service that is about to close, such as Chipping
Sodbury and Blackhorse. They found that the quality of service they
were getting ‘seemed to deteriorate as time went by as staff were not
supported and then not motivated, especially in the last 6 months.’
Carers felt that it was ‘cruel on the ones left behind’ as their friends
left, they got more and more lonely.
Carers are also still not being informed about what will happen after
the service changes:
‘….no-one is telling us what is happening whether it will stay open or
close in near future’
How do you ensure the quality of service people receive
at day services which are closing does not deteriorate
while people are waiting for an alternative or new service?
Bristol’s ‘Supporting Carers through Change protocol’
has just been launched. When can we expect to see this
adopted in South Glos?
Transport:
The reference group were concerned about changes to transport
provision for people with learning difficulties. Some of the issues
raised were:
 Funding not being provided to people over the age of 19 to get
to college.
 Travel buddy scheme not listening to carers opinions on
whether it is appropriate for the person they care for.
 Difficulty for older family carers to cover all the transportation
needs of the person with learning difficulties. If this pressure
increases the result may be that the person with learning
difficulties cannot access the day services they need.
 People with learning difficulties suffering bullying and hate
crimes when using public transport.
If transport to / from day services is removed / reduced what
can people do to stop the person they care for missing out
on the services they need?
Cancellations:
Most carers interviewed who had experienced a day service being
cancelled had been ‘told in advance’ or ‘given plenty of notice’.
However 2 families were not informed of the cancellation until ‘the
last minute’.
When cancellations had occurred, 5 out of 7 carers felt that a suitable
replacement service was not provided.
PERSONALISATION:
Direct Payments are working well for some people:
‘I get direct payments and they work well through A4e’
‘Initially difficult to set up, but once up and running it was easy to use.
Enough support in place.’
‘There has been enough support – used A4e a lot.’
However the majority of carers interviewed had decided direct
payments were not for them for various reasons:
‘Forms are too complicated and are poorly explained. They would be
inaccessible for most people with learning difficulties to do
themselves.’
‘Too much trouble and you lose out, not enough money for same
amount of time’
‘It was difficult to find staff. Used family friends for small package.’
‘I looked into Direct payments and I felt after payment for wages
being dealt with etc not enough money was left.’
‘I did have Direct payments but stopped it as I could only use it at
Bath Spa, and I did not use this enough. We could not use the
money for anything else.’
Carers and providers need support to understand what
personalisation is and what it can offer them
The reference group felt that many carers and some care providers
still do not understand what direct payments, brokerage, individual
and personal budgets are. ‘There is a need for independent advice on
the different options available for carers and people with learning
difficulties to access before making a decision about whether it is
right for them.’ It was suggested that a group of carers could be
trained and employed as ‘personalisation advocates / champions’ to
work with families to break down the myths and help families decide
on the best option for them.
The mileage allowance can be a barrier to accessing certain activities
especially when care providers do not use it flexibly. For example, a 5
miles a day allowance prevented one person with learning difficulties
getting to the cinema which she enjoyed doing. They did not allow her
to accrue this allowance over several days to make the longer return
trip possible.
What is being done to support people to understand
personalisation and make informed decisions about whether
and how to take control of their personal budget?
CARER BREAKS
The Importance of breaks for carers:
Carers talked about how being able to access a break for themselves
would help with having a life of their own, isolation and stopping
families reaching crisis point:
‘My husband and I never go out together only when my son is in
respite.’
‘I am quite isolated and it’s difficult to get to meetings because of
transport difficulties.’
‘Would love to hear some of the options [for taking a break].
Daughter awake screaming at night – the family is beginning to crack
and argue.’
Carers Budgets: Who is eligible and what is available?:
At the last LDPB it was pointed out that ‘carers access a carers break
budget through the carers assessment process, providing they are
eligible for a service’. The reference group wanted to clarify:
‘What is the eligibility criteria? If it is the critical-substantial rules [Fair
Access to Care], does this mean the person you care for is assessed
as critical or substantial or the carer themselves? If it is the carer,
how would the carer fit in to this criteria?’
The reference group also wanted to know more about what kinds of
things people were using the existing 85 budgets on:
Despite the fact that some carers are not eligible for a carers budget,
the reference group felt that 85 carer budgets out of 24,000 carers in
South Glos must mean that many carers who are entitled to a carers
budget are not getting them. It was felt that if carers had clearer
information about what carers breaks budgets are, who is eligible for
them and what they can be used for more carers would get the time
off they deserve.
If the FACS criteria is used to measure who is eligible for
a carers break, is this criteria used for the carer or the
cared for?
How are carers assessments used to see if a carer is
eligible for a carer break and are carers informed about
this potential outcome when they are having the
assessment?
What kinds of things are carers budgets currently being
spent on?
Carers Break Money assigned to PCT’s – carers involvement?
The reference group felt that the money assigned to PCT’s for carers
breaks, though not ring fenced, should not be used to provide staff for
the hospitals which although helpful to carers, do not constitute a
break from caring. It was suggested that carers should have more of
a say in how the carers break money is being spent.
How are carers currently involved in decisions about how the
money assigned to PCT’s for carers breaks is being spent?
Does the PCT plan to work with local carers, carers’
organisations and local authorities to publish its plans and
budgets for carers services for 2012/13?
HOUSING
The reference group felt that peoples experiences of housing were
‘hit and miss’, that there was ‘not enough choice’ and that the criteria
which is used to decide who gets houses needs to be explained more
clearly.
Whilst some carers were aware that they needed to plan for the
future housing of the person they care for, many were not aware of
what options were available to them:
‘I must try and face the future.’
9 out of 14 carers responded saying they had not had the housing
options for the person they care for explained to them.
We are sending out fact sheets to those carers who wanted to know
more about where they can find out about housing options and what
is available.
How can we improve the accessibility of information on
housing options, especially for older family carers who are
thinking about planning for the future?
Dale Cranshaw
Learning Difficulty Carer Support and Development Officer
Carers’ Support Centre
19/12/11