The Clinical Research Network, Mental Health ... needs to take into account what is important to service ... MQ: Transfo
Excellence in service user and carer involvement in mental health research Patients, service users and carers are essential to our work. Without them clinical research could not happen. Not only do we need the public to participate in research studies, we need them to help us shape our studies by sharing their personal experiences and giving insight. The NIHR Clinical Research Network and MQ: Transforming Mental Health have teamed up to acknowledge and celebrate the achievements of service users and carers who are making a difference in mental health research in the NHS. The Clinical Research Network, Mental Health specialty, advocates that all mental health studies have service user and carer involvement plans, to help make sure that the research is relevant to service users. It needs to take into account what is important to service users who might take part, or who might benefit from the results. Equally our specialty encourages people with personal experience of mental health problems and their carers to work with us, and get involved in individual research projects.
“The mental health research community has always supported stakeholder involvement. The awards were first initiated by the, as was, Mental Health Research Network, to encourage researchers, service users and carers to work together, to codesign studies. We know it is helpful for the research as it makes it more clinically meaningful and feasible to carry out. I am glad we are continuing this tradition with the help of MQ.” Cynthia Joyce is Chief Executive of MQ, she explains:
This year (2016), in collaboration with the charity MQ: Transforming Mental Health, the Network has awarded the study teams, service users and carers of two Network supported studies at three NHS sites for their contribution to patient and carer involvement in mental health research.
“If we want mental health research to deliver real improvements that matter to everyone affected, then the views of service users and carers must be at the heart of the work. MQ was delighted to be able to recognise three first-class examples of how this can be achieved.”
The awards promote the importance of service user and carer involvement and give an opportunity to share best practice. Dame Professor Til Wykes, former National Specialty Lead for CRN Mental Health, was heavily involved in the planning of these awards, she explains:
Delivering research to make patients, and the NHS, better
The service user award was presented to a group of young people working with the MILESTONE project teams based at King’s College London and Warwick Medical School. The MILESTONE project is trialling a new model and way of measuring the readiness, support needs and outcomes of young people who need to transition from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) due to ongoing mental health needs. Young people with experience of this transition were recruited as project advisors. Alexander Straker, Amanda Tuffrey and Leanne Walker attended the award ceremony for their area. The young advisers have been consulted at all stages of the project. They were extensively involved in the development of the research bid and protocol, gave ideas about recruitment and incentives and they attend the project advisory and scientific meetings. Wherever possible, they have also played an active role, for example, designing the project leaflets and thank you cards.
Location: South London. Pictured from left to right: Dr Paramala Santosh - Principal Investigator, MILESTONE project Mr Alexander Straker - service user Julie Straker - parent
Professor Swaran Singh is Chief Investigator for the MILESTONE project, he said: “There has been a high level of commitment from the project team to fully resource this aspect of the project, to ensure the service user involvement is meaningful. We want to ensure the service users feel valued, that they are part of the team, are able to contribute their experiences and have the confidence to challenge, and know that their views will be acted upon.” Amanda Tuffrey and Leanne Walker, two of the five Project Advisors, explain what winning the award means to them:
“It gives hope to other young people that from bad things can come good things, it shows that change can happen and there’s opportunities that can come from bad experiences to help improve things for other people; so it gives hope.”
Location: West Midlands. Pictured from left to right: Back row: Cynthia Joyce - Chief Executive, MQ Priya Tah, Frida Printzlau, Rebecca Appleton, James Griffin - MILESTONE project team Professor Swaran Singh - Chief Investigator, MILESTONE project Jayne Parker - MILESTONE project team Leanne Walker, Amanda Tuffrey - service users Mrs Carly Craddock - Research Delivery Manager and Continuous Improvement Lead Dr Jo Mearhart - Cluster Manager, NIHR Clinical Research Network Front row: Dr Cathy Street - Service User Coordinator Andrea Wohner - MILESTONE Project Manager
The carer award was presented to the Autism Spectrum Cohort-UK project team. The team work with carers, Newcastle University researchers and the charity, Autistica. The Autism Spectrum Cohort-UK project is about engaging adults on the autism spectrum and their relatives in research. At least one per cent of adults are on the autism spectrum. However, very little research has been undertaken into the life experiences of adults and older people on the autism spectrum, and how these can be improved. The aim of the Adult Autism Spectrum Cohort-UK project is to address this significant research gap. Researchers have worked in partnership with service users and carers to address the research needs of adults by undertaking priority setting and learning about how best to conduct the research. For example, the language used in materials and effective ways of engaging with this community. The national steering committee is also chaired by a parent of an adult with autism and the committee has adult and relative representation.
Dr Jeremy Parr is Chief Investigator for the Autism Spectrum Cohort-UK project, he said: “The team work with more than 100 autism organisations and more than 30 NHS trusts to give adults on the autism spectrum and their relatives a voice and an opportunity to make their own contribution to this important research. In the first 18 months, 700 adults and older adults (average age 41 years) and 230 relatives have taken part, making it one of the largest studies of its type in the world.” Malcolm Osborne, a carer, explains what his involvement in the project means to him:
“It’s been lovely to be involved from the initial 2013 meeting, coming to consultation events, and feeling that our contribution has been valuable. The research team have worked hard to encourage people to be involved in all stages - we’ve perhaps influenced how researchers think about working with adults and families.” Professor Kathryn Abel, National Specialty Lead for CRN Mental Health, reflects on the awards:
Location: North East and North Cumbria. Pictured from left to right: Back row: Jill and Malcolm Osborne; Cynthia Joyce - MQ; James Cusack - Autistica; Colin Wilson. Next row: Deborah Garland - National Autistic Society; Chris Mitchell - Autism Works; Paula Whitty - Northumberland Tyne and Wear NHS Foundation Trust; Jahnese Hamilton - CRN North East and North Cumbria; John Wadell. Next row: Karen Slee; Helen McConachie and Tracy Finch - ASC-UK project; Morag Churchill; Joanne Ashcroft - NIHR CRN (and below). Front row: Alex Petrou and Ann Le Couteur - ASC-UK project; Dr Jeremy Parr - ASC-UK project (and below).
“The meaningful involvement of service users and carers in research has wide-ranging benefits to all stages of the research process and has been shown to be associated with study success. “This year’s winners were chosen for their excellence in service user and carer involvement - using a co-production rather than consultative approach - in London and Warwick. Their work in Newcastle encouraged meaningful service user and carer involvement in an area where there has been very little research involving adults or older people with autism.” The Network and MQ plan to hold service user and carer awards in 2017, building on the success of this year. Look out for further information on the CRN Mental Health website: www.nihr.ac.uk/nihr-in-your-area/mental-health/
