As part of the INVOLVE series of examples which highlight public involvement in research funding applications (www.involve.ac.uk/resource-centre/examples/exploring-public-involvement-in-nihr-research-funding-applications/), Kristina Staley interviewed Jane Hughes, Lecturer in Community Care Research at the Personal Social Services Research Unit (PSSRU), University of Manchester about public involvement in a service evaluation being carried out by the Unit. This article is a summary of that interview[1]. 

About the project

The National Institute for Health Research School for Social Care Research (SSCR) has commissioned the PSSRU to carry out a service evaluation, the aim of which is to provide local commissioners and providers with evidence to inform the reconfiguration of local mental health services. The focus is on the needs of service users receiving inpatient and community mental health team services.

Patient / carer involvement prior to applying for funding

The project team has been asked to carry out this study by Pennine Care NHS Foundation Trust. The Chair of the Trust’s Service User and Carer Mental Health Forum invited the researchers to a Forum meeting to discuss the project. At this meeting the researchers asked for feedback on their outline proposal and also invited further involvement in developing their bid for funding. All Forum members were invited to a consultation meeting to develop the bid and nine of them came to share their experiences of accessing and using local services and to discuss the challenge of disseminating the findings to large numbers of local organisations. The Trust provided a venue and refreshments for the meeting and also paid people’s travel expenses. Forum members were asked to give their time free of charge and they were fine to do this as a one-off. They were advised that involvement in the subsequent research would be fully funded.

Impact of the early involvement

The feedback from service users and carers at the consultation meeting shaped the development of the bid, in particular strengthening the user involvement and helping to develop a local dissemination strategy. Originally the plan was to have only a small reference group but the project team subsequently decided to also include a lay panel in order to help reach a wider constituency. The feedback challenged the team to be crystal clear about the role of user involvement in the project and about payment for members of the reference group, not only for attending meetings but also in helping carry out the research. This made them careful to ensure that the user involvement was correctly funded. The researchers were keen that the project’s findings would reach the wide range of local organisations with a role in providing care to mental health service users and carers. It was suggested that members of the reference group  might take responsibility for this task as they were in touch with lots of organisations.

Continuation of involvement following funding

Forum members have been invited to join the reference group and lay panel and the Forum administrator is helping with recruitment to these. It was very important for the Forum to hear how their involvement had made a difference to the bid as this encouraged them to continue to engage with the project. Working with an existing organisation has been a very useful way forward because they have easy access to service user expertise and a network of people they can contact.

Lessons learnt

Holding the meeting on the Forum’s premises – on familiar territory – made it feel like coming to an ordinary meeting for them. Jane reflected: “You have to be very clear about what’s up for negotiation, the parameters of the consultation. Then you need to be flexible and prepared to sit back and listen to what people are saying so you don’t just get what you want to hear. Then you’ll hear some things you weren’t expecting. We heard interesting things about the link between what people want from a service and their age, which made us think through that in planning the research.”

www.nursing.manchester.ac.uk/pssru/research/nihrsscr/projects/adultmentalhealthservices/

Contact: Jane Hughes

Email: Jane.Hughes@manchester.ac.uk