A University Teaching Trust
Service User and Carer Forum
Training Room, 11th Floor,
Hexagon Tower, Crumpsall, Manchester
Monday 25th July 2016 14:00-16:00
Present:
Patrick Cahoon (PC) (Chair)
Bob Little (BL)
Ken Hsu (KH)
Roy Havery (RH)
Alan Valentine (AV)
Simon Katzenellenbogen (SK)
Anne McCrystal (AMcC)
Versil Pemberton (VP)
Anne Scott (AS)
Garry Lythgoe (GL)
Angela Connelly (AC), Lancashire Care
Marsha McAdam (MMcA)
Gaynor Morgan (GM)
Lillian David (LD)
Edith Garvey (EG)
Tom Harrington (TH)
Verona James (VJ)
Janet Sinclair (JS) (Minutes)
In attendance: Dr Dawn Edge (DE), Senior Lecturer & Winston Churchill Fellow, Manchester
University
Unfortunately Sheila Hill was not well enough to attend today, so it was agreed that Item 5 (PLACE
Visits) would be rescheduled for the August meeting.
No:
1.
Item:
Introduction & Apologies
Apologies were received from Manoj Mistry, Graham Stierl, Christine
Smith, Michele Moran, Lisa Crowther, Sheila Hill, Amanda Owens, Sue
Aspinall, Nighat Mahmood and Catherine Lowe.
2.
Notes of the last meeting (13th June 2016)
Page 1, Item 3.3, last paragraph to read as “AM (Anne McCrystal) noted
that the three questions asked to both GMW and Pennine were not
answered……….”
Action
The minutes of the last meeting were otherwise approved as a correct
record.
3.
Matters arising
buzz and Creative Wellbeing Service
Page 4, which stated that the physical activity referral team will be able to
provide bespoke exercise lead by exercise tutors. MMcA wanted to know
what this was/meant. PC explained that this meant PARS (Physical
Activity Referral Service) which receives GP referrals only. This is a longstanding service which has a recovery focus. BL said that he found this
service to be very good at a time when he needed to use it.
Care & Repair Service
JS had sent Care & Repair information to all members, but it was agreed
that Karen Kennedy would be invited back to talk about their services at a
future meeting.
Where People Matter Most
No:
Item:
Update on Service Retractions
PC discussed the meetings held regarding services to be stopped; the
consultation which proved to be a very difficult time at which to make
these decisions. However it was agreed at Trust Board in March to
retract the services as part of our Cost Improvement Plan (CIP).
Action
There had been a challenge made by a service user which may have led
to a judicial review. However, the CCG’s decided not to contest the
challenge, and the services will continue to be delivered pending the
outcome of a CCG consultation later this year.
MMcA asked about the service user and asked if it was someone from
the MUN (Manchester Users Network) and wanted to know if this happen
as discharges were already happening in the community. PC said he
didn’t know the details, but that it wouldn’t be appropriate to share.
VP asked if one of the services which was planned to stop was the
Psychosexual Service. PC said it was. However only some services were
stopped immediately, but other didn’t as it would be inappropriate to stop
during therapy.
SK asked if there was any news of the claimed change in policy by the
Prime Minister. PC stated that it was too early to come to any
conclusions.
Digital Stories
PC discussed the 3-day digital stories workshop taking place this week at
the Inspire Centre in Levenshulme, at which RH and VP would be
attending. Invitations had been sent out by email well in advance asking
for interest. AC asked if there was any more information about these.
GL spoke about when he did a story in 2014 and found the sessions very
interesting and simplistic. It was when he was informed that it was going
to Trust Board that he felt a little anxious and didn’t know what to expect.
However he was pleasantly surprised as to how well it was received by
Board Directors and the interest they showed.
MMcA made a story 3 years ago and found this to be very constructive
and taught her to speak out more, as she was very quiet and submissive
in the beginning.
PC spoke about a service user who told her story. When shown at Trust
Board, this showed where the system went wrong, which was taken on
board by members who acknowledged what had happened and where
the services had let her down, but was about the person in the middle of
it.
AS said that it brings things to life and the Trust always holds their hands
up if things go wrong and then look at services to improve.
Page 2 of 7
No:
Item:
SK stated that when he did a story, he found the support given by other
people who were telling their own stories of great help.
Action
Inpatient Quality Priorities
PC discussed the CQC Inspection which had a list of ‘must do’s’ and
‘should do’s’ to be achieved within a specific time. A further set of
priorities have now been identified to develop this work further. The new
Chief Nurse was looking at a number of key areas:1)
2)
3)
4)
5)
6)
Physical Health
Care Planning
Activities
Peer Review
Volunteering
Psychologically minded ways of working
MMcA spoke about care going forward and talked about her life
experience where there are a lot of care agencies who don’t come on
time or don’t turn up at all. It wasn’t the staff, it was the management.
She had complained about this happening, and had been contacted
today and was told that she would have someone today, but not
tomorrow.
EG stated that there are notice boards on all the wards, which appear to
be kept up-to-date.
GL said that he spent 10 years in hospital altogether, and during those
times there could be something going on the wards, so if activities which
were scheduled did not go ahead week-on-week, then you should be told
if therapy groups are not happening.
Quality Account 2015 – 2016
PC reported that this had finished now, but had realised that it wasn’t as
accessible as it should have been. A summary has been drawn up by
members of his team and agreed to send this out to members once this
had been given approval at Trust Board this week.
PC
Urgent Care
MMcA presented a poster on urgent care with leaflets which had been
given to most wards to display and disseminate to patients. Both MMcA
and AV were getting involved in various groups.
There are questionnaires for both the service user and carer, which can
be accessed online via www.surveymonkey.co.uk/r/j965NST (for service
users) and www.surveymonkey.c.uk/r/JDNGL7X (for carers). However,
there were paper copies of the forms for both service users and carers
available to take away and complete, and return in the Freepost envelope
supplied. MMcA and VA will also meet with individuals if they wished and
asked for people to show their support in this important piece of work.
PC thanked both MMcA and VA.
Page 3 of 7
No:
4.
Item:
The future of mental health services
PC reported that there was no change to date. Previously the Trust
withdrew from applying to be an FT (Foundation Trust), the TDA (now
known as NHS Improvement) were working with us on the option
appraisal. There had been a workshop with both Trusts looking to acquire
us, and the information is now with NHS Improvement who will make the
decision at their Board meeting this week.
Action
Next time the forum meets we should know who will acquire us. We still
have to balance the books and much hard work continues to be
undertaken by staff across the board. The due diligence process will
begin for the organisation taking us on, and expect many questions to be
asked.
By January (Manchester Mental Health and Social Care Trust) will cease
to exist, but we have to wait and see who takes us on. It was noted that
in all similar transactions, this is the first time that there’s been service
user and carer input which has been valuable and PC thanked everyone
for their help.
MMcA spoke about a Patient First conference she attended, where there
was a presentation showing where both Acute and Mental Health Liaison
work together. This had been acknowledged by the CQC.
SK wanted to know what happens when it is all signed and sealed, and
they don’t do what is already happening now. PC stated that it was the
responsibility on the Commissioners who will hold the provider to
account.
TH spoke of a meeting at the Town Hall which will feed into the
consultation and that the CCG’s will be watching closely. PC said that the
new organisation will look at resources in the ways they work and how
they would benefit.
5.
PLACE (Patient-Led Assessment of the Care Environment) Visits
Deferred to next meeting.
6.
CaFI (Culturally-adapted Family Intervention) Study
DE introduced herself as the Principal Investigator and her college Amy
Degnan, Research Project Manager who both worked on this and
thanked everyone for their help.
Background
DE spoke about African-Caribbeans in the UK have a significantly higher
risk of being diagnosed with schizophrenia than White British. The
national picture is reflected in Manchester, where African-Caribbean
people are 1.7% of the population but 16.5% of MMHSCT inpatients.
EG asked if people of ‘mixed race’, had the same chance of being
diagnosed? DE explained that there hasn’t been a lot of research about
people of ‘mixed’ ethnicity. She also explained that the rates of diagnosis
are much lower in the Caribbean – closer to that of White British people.
Page 4 of 7
No:
Item:
There are NICE (National Institute for Health and Care Excellence)
guidelines that recommend Family Intervention (FI) for schizophrenia,
which has proved every successful. FI is helpful because it 1) reduces
family stress and tensions 2) increases patients and families’
engagement with services and 3) less family stress and tension reduces
the chances of becoming ill again (relapse) and going back into hospital
(readmission). This is a particular issue for African-Caribbean people who
tend to come into the services quite late. Evidence does show that this is
despite numerous attempts to seek help, however, without success.
African-Caribbean people also more likely to come into services via the
police. Sometimes this is because families don’t know how else to get
help but this can increase friction and risk of family breakdown.
Action
Aims of the Study
DE pointed out that the study was funded by the National Institute of
Health Research Health Service and Delivery Research (NIHR HS&DR)
Programme, which aimed the study to: Assess the feasibility of culturally-adapting, delivering and
evaluating a new family therapy (CaFI) for African Caribbeans
with schizophrenia and their families across a range of clinical
settings;
 Test the feasibility and acceptability of delivery CaFI via proxy
families when biological families are not available.
Potential Benefits
The benefits include; improving access to and engagement with
psychological therapies, improving access to and engagement with
mental health services, improving families’ ability to support recovery,
improving support networks in communities, reducing social isolation,
reducing relapse and readmission to hospital and reduce negative
experiences.
The 3 Phase project plans involved recruiting service users and families
to try the new therapy.
DE explained that the CaFI team asked the Service User & Carer Forum
for your help with materials, experts by experience such as Psychiatrists
and Police.
AS asked if she thought that the Police had changed? DE said that she
had Master students who interview the Police. AS said that it was more
about the mannerism and approach of the Police. A full discussion took
place on the roles of the Police.
Study Progress: Phase 1 – Culturally-adapting Family Intervention
The draft manual to support delivery was outlined as follows:
Session 1 – 2
Session 3 – 4
Engagement and Assessment.
‘Shared learning’ – to reduce hierarchy.
Page 5 of 7
No:
Item:
Session 5
Session 6 – 8
Session 9 - 10
Action
Communication and advocacy – to know how the
system works.
Stress management, coping skills, problem solving
– being people first, not being labelled.
Relapse prevention and staying well.
Study Progress: Phase 2 – Recruitment and Training
DE announced that they had successfully recruited 9 Family Support
Members.
Study Progress: Phase 3 – Recruitment Target
DE confirmed that they had achieved the recruitment target of 30 service
users. She also explained that CaFI took part in MRC (Medical Research
Council) – START project in mental health, testing methods to increase
recruitment of BME participants into research. This involved producing a
flyer designed by CaFI’s Research Advisory Group (RAG) made up of
service users and carers. The study is led by Professor Peter Bower
(Principal Investigator) and Adwoa-Hughes Morley (Research Assistant).
SK stated that same issues (high rates of diagnosis and negative care
pathways) were being dealt with 25 – 30 years ago. He asked “How have
you dealt with diversity within the African Caribbean Group? DE
acknowledged diversity within African-Caribbean community as
highlighted by information on their Researching African-Caribbean Health
(ReACH) website: http://www.bbmh.manchester.ac.uk/ReACH However,
she stated that the majority of African-Caribbeans in Manchester are
either from Barbados or Jamaica. SK pointed out that a lot were either
born here or come over to England when they are young and only go
back to visit and wondered how this related to involvement in the study.
GL said how crucial this work was and how good it is to know it is being
done. He spoke about how important Family Support Members (originally
called ‘Proxy Families’ in the grant application) were and explained how
lonely he felt when, as an inpatient, his Father and family didn’t visit him
and relied on friends coming to see him. GL again said that CaFI had
done some remarkable work. He discussed a Mental Health Conference
he attended in Sale which looked at the issue of stigma within mental
health, which can come from your own family. ‘Proxy families’ are very
important.
DE pointed out that Amy was currently doing a PhD looking at the social
networks of African and African-Caribbean people with psychosis. We
know that the social networks of people with psychosis shrink over time
but we don’t know the extent to which this is the case for African and
African-Caribbean people or how it relates to accessing services. DE
expressed her thanks to the Forum and also stated that the Trust had
been very supportive from the very beginning.
SK stated that he notices when walking around Manchester, that there
are white and mixed race couples. Also he made a plea for the Police, as
he had a friend who was suffering with bi-polar and was approached by
the Police who were very understanding.
Page 6 of 7
No:
Item:
PC suggested inviting a member of the Police to a future meeting. AC
pointed out that she would send information to PC to share.
7.
Any other business
Medical Education Centre at NMGH
MMcA brought up the issue of not being allowed to drink water in the
Seminar Room in the Medical Education Centre, even though she
explained that she required to have drink with her at all times for medical
reasons. PC had raised this with Michele Moran.
8.
Date & Time of next meeting
The next meeting will take place on Monday 22nd August 2016, 2.00 –
4.00pm, in the Boardroom, Chorlton House, 70 Manchester Road,
Chorlton-cum-Hardy, Manchester M21 9UN.
Action
PC/AC
Apologies in advance from Patrick Cahoon and Janet Sinclair.
Page 7 of 7