Vanessa Pinfold and Terry Hammond

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Developing a carer strategy for the UK Mental
Health Research Network

• Vanessa Pinfold and Terry Hammond

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Structure
Background Rethink and MHRNWhy a scoping
exercise with carers?What we found? What
next?
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What is Rethink?

• Membership charity
• 351 front line services
• 130 support groups
• Campaigns
• Research
• Policy

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What is the UK MHRN?
The UK Mental Health Research Network supports
high quality research that will remain useful
over time, connect research to practice and
ultimately improve the quality of treatment and
care for people using mental health services
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Principle aims of UK MHRN?

• 1. To coordinate and facilitate the delivery of
  large-scale research projects that will inform
  policy and practice as it develops
• 2. To broaden the scope and capacity of research
  in mental health, including full involvement of
  service users and carers as well as frontline
  staff.
• Cont

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Aims cont

• 3. To help identify the mental health research
  needs (particularly in health and social care)
• 4. To develop research capacity through a range
  of initiatives at a local, regional and national
  level

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MHRN Structure

• Coordinating centres London and Manchester
• Operational steering group
• Eight hub sites
• Adoptions committee
• Research and Scoping groups
• SURGE Service User Research group England

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Why focus on carers?
Carers are a key stakeholder in mental
health Carers are highlighted by UK MHRN as a
stakeholder who will be fully involved Carer
involvement in research is lagging behind service
user involvement in mental health
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Discussion point
We would like to learn How much carer
involvement is found in other health and social
care research?
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Developing a carer strategy for MHRN process
Scoping exercise Consultation with
stakeholders Submitted report to MHRN Re-shaping
report into a strategy document Taking forward
recommendations
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Key questions
Do mental health carers want to get involved in
research? Do mental health carers want to get
involved in the MHRN? What needs to happen to
help carers get involved?
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Who was consulted?
Carers Service users Research academics (inc. SU
researchers) MHRN staff and members
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Consultation method
Carer survey (176 responses) Interviews (33
people) Email feedback (12 people) Second carer
survey (27 people) Innovative practice case
studies
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Starting position
At the moment carers are a bit of an after
thought and if someone has a service user
involved in the research project then carers tend
to be left out. Carer involvement needs to be
given more priority (MHRN Hub Lead)
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Starting position
Carers would be some of the most concerned
citizens about the future of mental health
research. They have a stake in defining what
research we should be doing. Need to identify
opportunities for carers to get involved
(Service User)
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What we found
Carers are interested in research but Scoping
process raised questions about how to operate the
vision in practice within MHRN Benefits and
challenges of carer involvement were identified
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Carers interests
- Practical research I am interested in research
that I can apply in everyday caring - Meaningful
involvement Ensure that there are genuine carer
representatives on national steering groups
relating to research. They need to be effectively
briefed and supported through this process -
Roles that will be useful and rewarding
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Research has to be relevant to them carers
view not more research not more
consultation (Carer involvement lead) MHRN
need to understand why lay groups come to
research and they need to be clear about how
carer involvement will make a difference. Carers
have to see the point of a project. They have
less time because they are often trying to juggle
several roles and responsibilities. When we did
our research we could see the point (Carer)
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How should the MHRN attract carers and keep them
interested

• Communication
• Value and listen to carers
• Offer regular support
• Networking and learning opportunities
• Provide specific training

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Dont patronise them or just use them for
political correctness. Make sure everyone
involved is fully trained and briefed before they
are asked to become involved. Dont waste their
precious time. Listen to the quiet ones
(carer) Show them what has been advanced by
being involved (carer)
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Considerations

• Carer involvement which carers?
• Can user and carer roles combine?
• Who builds the capacity to enable carers to get
  more involved in research?
• Attracting carers to MHRN
• You cant assume that service users and carers
  perspectives are one and the same. Challenge for
  Hub is how to represent carers, without
  resources (Hub coordinator)

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Which carers for what tasks?

• Skills and experience research / caring
• Representation issues
• Definitions who is a mental health carer?
• Its my qualifications and publications, not my
  experience of caring, that testify to the quality
  of my research. Carer status should not override
  research qualifications in the design and conduct
  of research (Academic)

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Who builds capacity?

• - Where are the carers who want to get involved
  in MHRN?
• How do we train and support carers who want to
  get involved in research?
• Do structures and processes need to change to
  accommodate their inclusion?

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Benefits for researchers

• Raise profile of carer encourage more research
  in this area
• Provide different perspectives to improve
  quality of research
• Quite a lot of research put before the RD panel
  isnt research but audit feels that quality of
  studies can be poor even from experienced staff.
  Feels that HUB will encourage good quality
  research and need to have lay people scrutinising
  research to drive up quality in research (Carer
  member of MHRN hub)

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Benefits for carers

• Contributing to advances in research and
  treatment
• Raise the profile of carers
• To work using expertise as a carer and gain new
  skills
• Carer led work is very rewarding. Been involved
  in different aspects of service development and
  the research project has been the most rewarding
  project because we saw as a result of the
  evaluation, the extension of the service locally
  (Carer)

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Challenge for academics
Issue for academics if you work with users and
carers it is more complicated. They have gone
down the route of working with users as there has
been more emphasis on user involvement in
research. The thought of doing anything with both
groups which will ensure the process is more
complicated is not well received. Carers add
another dimension. Feels that academics are not
skilled to carry out user and carer involvement
and require training. Academics dont know how to
involve users and carers effectively (Carer)
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Challenge for MHRN
- Identifying roles for carers at ALL levels and
support structures - Developing a successful
model It is important to train people so they
have the skills and confidence to engage
effectively in the MHRN. People need to feel they
have a real and valid role not just as a
service user or carer (Hub coordinator)
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Challenge for carers

• MHRN is daunting and challenging
• Impact on time and emotions
• Carers lack confidence to get involved
• If youve been involved before you have
  confidence to turn up at events but will still
  need specific training to participate in MHRN.
  The academic world has its own language which can
  be difficult to understand (Carer)

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Challenge for carers
Tackling the carer image Carers are a
disempowered group of people. They are reluctant
to push themselves forward, main concern is for
their relative. Carers feel they dont have the
right to ask for more and this is reinforced by
academics, clinicians and to a degree parts of
the user movement who remain suspicious of carer
(Academic)
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Where next?

• - Commitment in MHRN to develop carer involvement
• - Plan to take forward initiative
• Future work on developing a strategy
• Appointing carer development worker

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Where next forRethink?
Carer involvement in research as part of a larger
agenda for changing the way we view mental heath
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Discussion
How much carer involvement is found in other
health and social care research?