Rethink Mental Illness
Cambridge Rethink Carers Group
incorporating Peterborough & Fenland
the local Rethink Mental Illness voluntary carer support groups
The Cambridge and the Peterborough and Fenland Groups help the carers of
those with severe and enduring psychotic illnesses including schizophrenia
Chairman/Co-ordinator: David Jordan 01354 655786 email: d.jordan994@btinternet.com
Newsletter 285
January 2013
Wednesday 30th January 2013 - 7.30pm
Mind in Cambridgeshire offices, 100 Chesterton Road, Cambridge
Parking can best be found in the side streets off Chesterton Road
Dr Caroline Lea-Cox
a member of the Cambridgeshire and Peterborough
NHS Mental Health Clinical Commissioning Group
Will update the changes in the commissioning of mental health services
and answer questions on how she sees the future for patients and carers
Rethink Mental Illness is the operating name of the National Schizophrenia Fellowship – Charity No. 271028
Cambridge Rethink Carers Group
Donations to the Cambridge Rethink Carers Group
Christmas is always an expensive time and I am grateful to those who think of making a donation to
the group at this time. Again (I have said it before) the ‘usual suspects’ have been very generous as
have been several other friends, relatives and recipients of the Newsletter.
Although we may not see you during the year you always ‘come up trumps’ a sincere thank you.
Please remember that we are pleased to receive referrals from friends, relatives, CPN’s and other
professionals who know a carer, user of services or an organisation needing financial help Contact
me on 01354 655786 or 07860 589758 or email: d.jordan994@btinternet.com
Thank you
Mary and I thank you for your cards and emails and the messages therein. Mary, nine times out of
ten, will identify a cartoon for the Newsletter as she says, I chose a cartoon with too deep a meaning.
The cartoon on the notice for the Christmas Social was chosen by me – at a recent Cambridge Group
Committee Meeting a member, who I will not name, said that they could not understand the cartoon !
guess who is choosing the January cartoon ?
Hidden Carers
The Cambridge and the Peterborough and Fenland Rethink Carers Groups are about to launch a
‘campaign’ across the area to identify the carers of those with mental ill-health.
Increasingly we are receiving telephone calls to Careline, emails and referrals from carers of those
with mental illnesses, some severe and enduring psychotic including schizophrenia.
One of the surprising and worrying aspects of these contacts is that, until they made contact with
Rethink, they have felt isolated and needing to speak to other carers for many years not knowing
that there were voluntary groups of carers who had experienced problems similar to their own.
We have been fortunate to be receiving funding from East of England Strategic Health Authority
and Ridgeons who have builder supply businesses across Cambridgeshire and Peterborough.
We will have practical support from the Diocese of Ely, GP’s and the Primary Care Trust and other
organisations involved in serving those affected by mental illness.
We will be working with other carer organisations providing services to carers such as Making Space
.and the Peterborough Carer Support Service.
We are searching for volunteer carers who are able to help by contacting for instance – GP Practice
Groups, Church Management Groups and others who may be able achieve our objective which is to
contact Hidden Carers, introduce them to a local support group, a telephone helpline and to ongoing
communication through a newsletter and/or email.
To support the campaign with information leaflets etc., we are keen to engage with a person, not
necessarily a carer, who could co-ordinate and help organise the campaign. We can pay for agreed
expenses – ie. telephone and/or contribution to broadband. If you can help, please contact me at:
d.jordan994@btinternet.com or 01354 655786.
Newsletter
Cambridge Rethink Carers Group
January 2013
Page 2
How to be put on ICER – Part 2
From a Cambridge Rethink Carers Group correspondent.
None, some, or all of you may remember the first part of this (true) story which was published in the
September/October 2012 issue of this Newsletter.
It related my attempts to get onto the I.C.E.R. scheme. Individual Carer’s Emergency Respite is a
Cambridgeshire scheme whereby the first 48 hours of care for the person you care for, is covered in a
sudden major emergency that incapacitates you.
For those with short memories or had lost the will to ‘follow the saga’ here is a brief recap …
The Story so Far
The attempt started in mid-June, when I called the Cambridgeshire County Council knowing that I
needed a Carers Assessment before I could get onto the ICER Scheme. Eventually I was told that
CCC don’t, themselves, do Mental Health carer’s assessments, so I was referred to Making Space
who do.
By the end of July I had finally got the assessment completed and then there was a further, lengthy
delay before the assessment found it’s way back up the chain and was passed to Crossroads Care
Cambridgeshire, mid-September, who are the people who manage the ICER scheme, naturally
they wanted to do there own ICER assessment.
This is where the Cambridge Rethink Carers Group, September/October Newsletter article left us
hanging breathlessly ……
OK folks - Wakey Wakey
Well, I had set up an appointment with Crossroads for early October 2012 which was looking good,
until …. they had to cancel it … because someone had activated their ICER scheme !.
Eventually we managed to re-schedule my assessment and it was done, over the telephone, in midOctober and so, by late October, I was ‘on their books’. I was issued with a card and a telephone
number. I, or anyone on my behalf, could call to activate the call to put in place emergency care, for
48 hours for the person I care for in case of me being hospitalised, incapacitated or worse.
So what ?
I just hope that others, without an existing carer assessment, manage to get on the scheme in less than
the four months it took me. Admittedly, at times, I was busy, so I did not ‘chase’ the lack of response
as vigorously as I could (should) have done.
I am sure that it is worth the effort and I strongly recommend that others with caring responsibilities
explore whether it might be of help to them. Good luck. A Nonny Carer-Mouse
PS Keep a record of all the people you speak to along the way, including dates and times, you will
probably need it.
For more information about the ICER scheme on this web-link, accurate as at 16th December 2012:http://www.housingcare.org/service/ser-info-5272-individual-care.aspx
A leaflet (Individual Carer’s Emergency Respite: ICER scheme – mine was dated February 2010)
is available from: adultsocialcareleaflets@cambridgeshire.gov.uk or the Cambridgeshire County
Council Direct Contact Centre on 0345 045 5202
Crossroads Care Cambridgeshire own web page about the scheme as at 16th December 2012 - is at:
http://www.westangliacrossroads.org.uk/index.php?pageid=54
Newsletter
January 2012
Page 3
Cambridge Rethink Carers Group
‘ Staying at a crisis house helped me to bounce back’, a reflective piece written for
this Newsletter by Liz Stokes.
When I found myself at crisis point, I knew that in the low and anxious state I’d reached, treatment
at home from the Crisis Resolution & Home Treatment (CRHT) team would not be a suitable option
for me.
From previous experience, I recognised that the result would be a deepening depression, struggling
at home alone and becoming increasingly socially isolated. I dreaded this scenario so when home
treatment was offered to me following my assessment, I was relieved to hear that here in Liverpool
there was a possibility that, if and when a bed became free, I could be referred by the CRHT team
to Amethyst House, a four bed ‘crisis house’.
Instinctively, I felt that a crisis house would fulfil the function of a ‘safe haven from the storms’
which Acer, the mental health ward back home in Cambridgeshire, had provided during previous
depressive episodes of my bipolar disorder. Unfortunately the limited bed availability meant that it
was three weeks later, and in a more fragile state, that I was offered a bed there. Finally, after this
seeming never-ending period of anxiety, only compounded by worry about being so ill and at times
reaching desperation that there was no way back to being ‘me’, there was a glimmer of hope.
So what was a crisis house like ? Amethyst House was a regular house within a modern housing
estate, with each of us having our own private bedroom with ensuite shower and toilet; plus fridge,
a table, chairs and an easy chair. This provided a place to take friends for a chat when they visited;
as downstairs the kitchen, dining room, lounge and garden were shared, communal areas.
Support workers were on duty 8.00am to 10.00pm to offer support with rebuilding daily living skills
and confidence and guidance in managing your mental health crisis; and were on a ‘sleep in’ in
another bedroom if needed in an emergency. Additionally, CRHT members continued to visit and
monitor you during your stay.
How did being in a crisis house help ? I found staff a very patient listening ear to my worries
(so many now accumulated, on top of the original work stress, which took me to breaking point) a
helping hand in sorting out neglected bills etc.; but, most importantly, being around people (them
and my fellow service users) slowly prised me from my agitated, depressive thoughts. The road to
recovery was step by step – the first night, I remember my restlessness and inability to settle to
watch TV with the others, but also my sense of relief at feeling safe, the support worker Annie’s
kindness at gently prompting me to get something to eat and a cuppa. Day by day, I got back to a
proper routine with sleeping and eating lost during my time at home, then gradually venturing back
out into the world with accompanied walks to the local shops and greasy spoon café. Importantly
for me by week three of my stay, when I was in a position to start thinking about going back to I
was able to start a phased return of a few hours each day while remaining at Amethyst House. This
allowed me support to handle difficulties which had arisen with my employer over my period of
sickness and to begin to rebuild my confidence in my ability to do my job.
So I ‘ bounced back’ and I am very thankful that I had the opportunity to receive this type of care since
I know crisis house facilities are very few and far between and do not exist back in Cambridgeshire.
Rethink run several in other areas of the country and I sincerely hope that this New Year brings fresh
consideration of the vital role which crisis houses could play in acute mental health care too.
Thank you Liz for this ,and your enthusiastic campaigning for others, and for the other information
you exchange with me.
Newsletter
January 2013
Page 4
Cambridge Rethink Carers Group
Careline - a telephone helpline for the carers of those with mental ill-health including
severe and enduring psychotic illnesses can be contacted 24/7 on: - 01354 655786
Please note – the Careline is answered by volunteers who are carers of someone with a mental illness.
They will listen and provide information to help you. This may include signposting to a service who
may be in a better position to advise on a particular issue. They do not provide advice but may during
the course of the call relate their own experience of caring if they think it will help.
Careline is used by the carers of those with mental ill-health living in Cambridgeshire, Peterborough,
Huntingdon and Fenland. Carers can be assured that their calls are not recorded for training purposes,
they are received with empathy and in confidence.
If, during our conversation, we are unable to allay your concerns we will signpost you to a person or
an organisation who can help you. We will, with your agreement, speak to others on your behalf.
We are told that, by ‘just being there’, another carer , we often provide help to put a very worrying
situation into perspective.
You do not need to be a member of Rethink Mental Illness to contact Careline.
During 2013, we hope to increase the number of volunteers prepared to answer calls to Careline,
training will be available. If you feel that you can help, please contact me on 01354 655786
Data Protection Act – Important Information
Limited information is recorded on computer in respect of those who receive this newsletter and/or
contact the Cambridge and the Peterborough and Fenland Rethink Mental Illness Carers Groups.
The record is basic information only for the following purposes – List of name and addresses used
for the preparation of address labels and for reference purposes by officers of the Groups.
This information will not be communicated to third parties.
Unless the Co-ordinator is advised to the contrary, it will be assumed that you have no objection to
your name being included.
During the next two months we will be making changes to the format of the Newsletter. We trust
that you will you will approve and we will welcome your comments.
In the May/June 2012 Newsletter, we advised that we are in the process of identifying those who will
receive the Newsletter electronically and those who are unable or who prefer postal delivery.
Since that date in excess of 60% of the Newsletters are sent electronically
PALS (Patient Advice and Liaison Service)
T he PALS team can be contacted on: 0800 3760775 from 9.00am to 5.00pm Monday to Friday.
The ‘out of hours’ service can be contacted on 0800 0522252 from 5.00pm to 10.00pm Monday to
Friday and from 8.00am to 10.00pm on Saturday, Sunday and Bank Holidays.
If you are unable to resolve your concerns with the local management, PALS will support, advise
and assist service users, carers, friends and families to resolve them promptly, efficiently and in
confidence’
Newsletter
January 2013
Page 5
Cambridge Rethink Carers Group
The new 111 non-emergency telephone service
I have previously written of my concerns about the potential problems in the communication system
established between the Ambulance 999 service and Urgent Care Cambridgeshire, the providers of the
111 non-emergency. I am not alone in my concern.
Recently I have exchanged emails, met with professionals and I feel more confident that all those
charged with the provision of these services are aware of the need to ensure that those affected by
mental ill-health – patients and carers. Below I print replies received from both services.
From Lyn Reynolds, Associate Director of Primary Care Operations, East of England Ambulance
Service NHS Trust.
Dear Mr Jordan,
As each 111 provider goes live across our region, the ambulance service is fully informed and involved
in the implementation and post go live process.
The 111 provider and the respective PCT are responsible for the directory of services that sits within
the 111 system. The directory of service should contain all the relevant organisations for patients to
be referred on to if required.
These will include 999, GP out of hours service, GP in hours surgeries, dentists, pharmacy, mental
health services etc., so patients with a mental illness needing emergency care should not be disadvantaged by the 111 service. It is in fact designed to be simpler and easier for patients to access health care
and the service can despatch an ambulance automatically if required.
Throughout the process of implementation the ambulance service is fully engaged. Following the go
live of the 111 service, daily conference calls are held to review the previous day’s performance and
outcomes. These will continue for several weeks, then revert to weekly monitoring. The ambulance
service is fully involved in these calls, and will be keeping a very close eye on the 999 performance !.
You may find it helpful to join the respective PCT’s 111 programme board – as these should have
each key organisation represented if you need/would like more assurance. You will need to contact
the PCT in order to gain the relevant details/times etc. I hope this is helpful and answers your query.
From Linda Halksworth, Interim C.E.O. Assistant Director Corporate and Service, Urgent Care
Cambridgeshire.
Dear David
Thank you for your email and interest in 111. The Cambridge and Peterborough 111 service has been
designed in such a way that it will make clearer the journey for the patient. Urgent Care Cambridgeshire provides a local service, staffed by a local team with local knowledge. I have every confidence
this new service will provide the right service first time. UCC and NHS Cambridgeshire and Peterborough are working with partner organisations to ensure the correct services are ‘mapped’ and
available.
I will be keeping in touch with this situation and keep you informed. For some years Rethink locally
has been consulted by the Cambridgeshire Fire and Rescue Service concerning potential problems
attending an incident where a person with mental illness may be involved.
Newsletter
January 2013
Page 6
Cambridge Rethink Carers Group
Rethink Mental Illness – Physical health and mental health
During 2012 Rethink Mental Illness continued to be included in consultations with Government in
the creation of strategies designed to improve the services delivered to persons with mental health
problems and initiated the Schizophrenia Commission headed by Professor Robin Murray.
The following letter from Jen Kilyon, a mother of a son with schizophrenia, comes from the latest
issue of ISPS.
As the mother of someone who has been saddled with a diagnosis of schizophrenia for too many years
I had mixed feelings from the start about the value of setting up a commission which presupposes the
validity of that label. I was therefore pleased to hear that the Inquiry into the Schizophrenia Label had
been set up in tandem. My son has constantly found the ‘diagnosis’ meaningless and damaging and
this has often led to him and us as a family not being able to have a useful discussion about what would
be helpful .
I was therefore pleasantly surprised with the coverage and to some extent the content when the Schizophrenia Commission was published. The fact that for at least a few days there was headline news
about the dire state of acute psychiatric wards and the lack of psychological therapies enabled those
passionate about changing the system to join in debate about what needed to change.
I was amazed to hear Professor Robin Murray on the Today programme telling John Humphries that
long term use of large doses of anti-psychotics is dangerous to health and can cut 20 years off people’s
lives. I was amazed, not because this was news to me – I have been acutely aware of his for at least
10 years – but because it has actually been stated as fact on national media by someone I regard as
mainstream.
Whilst there are many opportunities that have been missed in the setting up and writing of this Commission, I do believe it has moved the debate on at national level. At least it has prompted the Inquiry into
the Schizophrenia Label which has just published an interim report at: www.schizophreniainquiry.org
containing many powerful quotations from people who have had to endure the label. I urge you to read
the full report when it is ready.
Jen Kilyon
I have recently been invited to join a group by the Royal College of Psychiatrists to report upon the
potential problems relating to mental health and the impact this has on physical health. I would
welcome feedback from carers and patients on all aspects of their experience/knowledge of the
relationship of psychotic medication and physical health. Contact me on: d.jordan994@btinternet.com
Rethink Mental Illness and Universities
Over the past few months Rethink Mental Illness has been approached by a number of universities
enquiring about the possibilities of developing support groups, including Cambridge University.
In Cambridge I believe that we have maintained contact with those in the University who may have
knowledge of the level of need which will fluctuate year in year.
Rethink have asked ‘what do we know’ – what pieces of work have or are happening, what needs there
are and what could we, as an organisation, can do.
Finally, what contacts do we have ? I, again, would welcome feedback from anybody who has old or
current knowledge of the need for a Rethink group to support those with mental ill-health and those
who seek to help them within the University.
.
Newsletter
January 2013
Page 7
Cambridge Rethink Carers Group
A Rethink Mental Illness voluntary carers support group
Diary 2013
Wednesday 30th January
7.30pm
Dr Caroline Lea - Cox, a member of the Cambridgeshire and
Peterborough NHS Mental Health Clinical Commissioning Group
Will update the changes in the commissioning of mental health
services due from 1st April 2013
A local GP, Caroline will address the group and answer questions
on the ‘pro’s and con’s’ could affect patients and carers.
Venue: Mind in Cambridgeshire offices, Barrere House, 100 Chesterton Road, Cambridge
Wednesday 20th February
7.30pm
Discussion Evening
What did we learn at the January meeting ? What is happening to
‘integrated care’ is it a reality or will it continue to be a myth ?
Venue: Mind in Cambridgeshire offices, Barrere House, 100 Chesterton Road, Cambridge
Wednesday 27th March
7.30pm
Ms Julie Spence OBE
Non-Executive Director of the Cambridgeshire and Peterborough
NHS Foundation Trust will exchange views.
Ms Spence, who lives in Cambridge, has more than thirty years
distinguished public service in the police, most recently as the
Chief Constable of Cambridgeshire. She has a good understanding
of the NHS.
Venue: Mind in Cambridgeshire offices, Barrere House, 100 Chesterton Road, Cambridge
Wednesday 24th April
7.30pm
Discussion Evening
An evening to voice your concerns, exchange views and to meet
and support new carers.
Venue: Mind in Cambridgeshire offices, Barrere House, 100 Chesterton Road, Cambridge
Saturday 11th May
9.30am to 4.00pm
Flag Day 2013
All those who can spare an hour during the day please help to
collect monies for those affected by mental illness in Cambridge
Venue: St Michaelhouse Centre, Trinity Street. Cambridge
To book your spot please email Jim on: jim.schwabe@ntlworld.com or 01223 500829
Notice of a new generic carers group in Histon
Tuesday 5th March (and the first Tuesday of each month) at 11am to 1pm in The Pavillion on the
Histon and Impington Recreation Ground, New Road, Histon. Free monthly drop in for carers of
all ages. Contact Jean Newman on 07772 437789 or jean.newman7@ntlworld.com
Newsletter
January 2013
Page 8
The Cambridge and the Peterborough and Fenland Rethink Carers Groups
The Cavell Centre, Peterborough
A message from Dr Attila Vegh, Chief Executive, Cambridgeshire and Peterborough NHS Foundation
Trust sent on Monday 14th January 2013.
Dear Colleague
I am sure that you have read the news reports today regarding levels of staffing at the Cavell Centre
in Peterborough. I wanted to write to set the record straight.
The report used to identify us as one of the Trusts non-compliant with staffing is more than two years
old, and since then the Trust has been found repeatedly compliant in this area.
I am delighted to be able to tell you that the Care Quality Commission (CQC) has, this morning,
published the results of their unannounced inspection of the Cavell Centre which took place just last
month on 12th December 2012.
The report has found the Cavell Centre compliant on all levels – including staffing. You will want to
know that we were also found compliant in:





Respecting and involving people who use our services
Safeguarding people who use services from abuse
Assessing and monitoring the quality of service provision
Notification of death of a person who uses services
Notification of other incidents
We are in the process of correcting reports which refer to the outdated findings but I wanted to write
to you personally to set the record straight.
It is worth pulling out some specific comments made in the CQC report as it tells us a very good story
about the journey we have been on over the past year.
CQC inspectors found that “Staff had the skills, knowledge and experience to offer appropriate care to
people……(staff had) completed a wide range of training so that they were equipped to carry out their
role”.
In the area of safeguarding, inspectors noted that staff were “well trained”, and that patients felt safe.
Looking at the standard for respecting and involving people who use services, inspectors found that
staff worked hard to promote people’s dignity, speaking kindly and patiently to people and listening
when people wanted to talk.
I know that you will want to read the full report that is due to be published on the CQC website’
Regards
Dr Attila Vegh
I am pleased to be able to include the above message as it reflects the tremendous work put in by
Dr Vegh, directors, management and ‘frontline’ staff in turning around the fortunes of the Trust.
Congratulations and best wishes for 2013 and beyond.(I have a copy of the CQC report if anybody wishes to see it, I can forward it to you)
Newsletter
January 2013
Page 9
The Cambridge and the Peterborough and Fenland Rethink Carers Groups
Peterborough Carer Support Services
Litton House, Saville Road, Peterborough. PE7 7PR
Telephone: 01733 843344 or email: pborocs@rethink.org
Working together to help everyone affected by mental illness recover a better quality of life.
A Rethink Mental Illness service offering the carers, friends and family of those affected by mental
illness living in Peterborough, one to one support, support groups, information and advocacy.
Rethink continue to strengthen their team in Peterborough to provide a comprehensive service to an
increasing number of carers, if however you are unable to contact anyone at the Peterborough office,
and your call is urgent you could contact the Helen Doyle, Area Services Manager for Lincolnshire
and Peterborough on 01522 536029 or email: Helen.doyle@rethink.org
Cambridgeshire Carer Support Services - Making Space
Making Space provide carer support services in Cambridge City, South and East Cambridgeshire,
Huntingdon and Fenland.
Contact: Pauline Mansfield, Service Manager on 01480 432504
The Peterborough & Fenland Rethink Carers Group
A Rethink Mental Illness voluntary carers support group
The Peterborough and Fenland Rethink Carers Group is s ‘virtual’ group. Local carers from the
Peterborough area, Fenland and Huntingdonshire can contact the group through the telephone
helpline – Careline – on 01354 655786. If you are concerned about changes in the delivery of
mental health services in your locality please contact the group.
Write to: David Jordan, Rethink Mental Illness, PO Box 50, March, Cambs. PE15 8XE
Rethink Mental Illness
A reminder that the contact telephone number for Rethink Mental Illness is: 0300 5000 927. This
telephone number will put you in touch with all departments including that of Rethink Advice and
Information Service.
You can write to Rethink Mental Illness at 89 Albert Embankment, London SE1 7TP or email:
yourvoice@rethink.org or you could also ‘twitter’ on: http:/twitter.com/rethink. You can also contact
Rethink on Facebook: www/facebook.com/RethinkCharity.
The annual membership subscription is £24.00. which covers the cost of a quarterly magazine:
Your Voice and the Advice and Information Service.
You do not need to be a member of Rethink Mental Illness to attend local Rethink meetings or to
receive a copy of this Newsletter or contact Careline
Cambridge Independent Advocacy Service (C.I.A.S.)
Cambridge/Huntingdon: 01223 218500. Fenland: 01354 652445. Peterborough: 01733 758278
Newsletter
January 2013
Page 10