Vanessa Pinfold and Terry Hammond Developing a carer strategy for the UK Mental Health Research Network

Structure Background: Rethink and MHRN Why a scoping exercise with carers? What we found? What next?

What is Rethink? Membership charity 351 front line services 130 support groups Campaigns Research Policy

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

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 …

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

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

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

Discussion point We would like to learn: How much carer involvement is found in other health and social care research?

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

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?

Who was consulted? Carers Service users Research academics (inc. SU researchers) MHRN staff and members

Consultation method: Carer survey (176 responses) Interviews (33 people) feedback (12 people) Second carer survey (27 people) Innovative practice case studies

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)

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)

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

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

“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)

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

“Don’t 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. Don’t waste their precious time. Listen to the quiet ones” (carer) “Show them what has been advanced by being involved” (carer)

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 can’t assume that service users and carers’ perspectives are one and the same. Challenge for Hub is how to represent carers, without resources” (Hub coordinator)

Which carers for what tasks? - Skills and experience: research / caring - Representation issues - Definitions – who is a mental health carer? “It’s 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)

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?

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 R&D panel isn’t 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)

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)

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 don’t know how to involve users and carers effectively” (Carer)

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)

Challenge: for carers - MHRN is daunting and challenging - Impact on time and emotions - Carers lack confidence to get involved “If you’ve 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)

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 don’t 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)

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

Where next for Rethink? Carer involvement in research as part of a larger agenda for changing the way we view mental heath

Discussion How much carer involvement is found in other health and social care research?