From Global to Local: How Patient and Public Involvement is Shaping Mental Health Services in CLAHRC West Midlands

Each year, World Mental Health day draws attention to the many issues people with mental health issues need to overcome on a daily basis. Although there are effective treatments for mental health disorders, such as medication and therapies, it is important that people can access the right care at the right time.

There are many stigmas associated with having a mental health disorder, which impact on people disclosing that they have a problem in the first place and then accessing the right treatment as early as possible. In the UK, NICE quality guidelines, which were informed by research undertaken by CLAHRC WM, recommend that 50% of people of all ages who experience psychotic symptoms for the first time should be treated with a NICE approved care package within two weeks of a referral. However, researchers in CLAHRC WM’s Prevention and Early Intervention in Youth Mental Health theme found that young people were not always accessing the services they needed, particularly as they were making the transition from child to adult mental health services. This was due to a number of reasons, including poor help-seeking behaviour, and bottlenecks in specialist mental health services. You can read more about this research here.

Having identified a need to improve access for mental health services for young people in the region, CLAHRC WM researchers work in partnership with patient and public advisers to deliver research that is both meaningful and accessible to them. In particular, CLAHRC WM researchers work with existing patient and public groups in the region to co-design and develop services that are appropriate for the young people that will use them. These groups included the Young Person’s Advisory Group, facilitated by the Clinical Research Network, and the Youth Board (recently renamed Ripple), a group of people aged 16-25 years old, some of whom have lived experiences of mental health issues.

As with all projects within CLAHRC WM, patients and the public can work with researchers in all stages of the research cycle: from coming up with ideas of what research to do, right through to making sense of research findings and sharing these with relevant networks. Readers of the News Blog will have read about how researchers and young people worked with primary care and Child and Adolescent Mental Health Services (CAMHS) to create an effective and appropriate youth clinical service to meet local needs, reduce delays, improve transitions between services, and adopt a preventative triaged intervention model. This new service is delivered by the Forward Thinking Birmingham Partnership.

Young people working in partnership with CLAHRC WM are essential to ensuring that the services both meet the needs of the people who will use them, and are also designed in the right way. Some examples of how CLAHRC WM has involved patients and the public are:

  • Designing and developing www.youthspace.me, an online resource that offers relevant, up-to-date information and advice for young people and their families on all aspects of mental health. Young people helped to design the pages, write content and ensure that the language is accessible.
  • Helping to raise awareness of mental health issues through designing materials for public campaigns such as ‘Don’t Stay Silent’ and ‘Don’t turn your back on the symptoms of psychosis’.
  • Celebrating the successes of the new care pathway through ‘Shout Out for Youth Mental Health’, an event held in Birmingham on 7 June 2016. Young people had an active role in planning the day and facilitating the sessions. Challenges of living with mental health disorders were brought to life through dance and poetry performances by young people, and young people’s willingness to share their experiences emphasised the need to ensure mental health services are accessible and acceptable. You can read more about the event here.
  • Participating in an educational randomised controlled trial in secondary schools across Birmingham to reduce stigma and increase mental health literacy in young people.

Researchers in CLAHRC WM’s Youth Mental Health theme work with Patient and Public Advisers, Barry Clark, Keith Elder and Richard Grant, to ensure that benefits of working with patients and the public in research are maximised. Bringing a wealth of experience and knowledge, our Advisers have not only helped to shape PPI strategies within the theme, but have engaged local networks and communities about the research undertaken by CLAHRC WM in youth mental health. Working in partnership with patient and public advisers ensures that key findings from research are accessible and have impact.

One of the current projects underway in the Youth Mental Health theme is SchoolSpace, a partnership with CLAHRC WM researchers and schools to understand the factors which precede the onset of eating disorders. With growing need for schools to concern themselves with the well-being of their students, researchers in CLAHRC WM are working with schools to design effective screening tools and interventions for teachers and those who work with young people. Our PPI Advisers have worked closely with researchers to help ensure the successful development and implementation of SchoolSpace.

On World Mental Health day, some of the twitter hashtags were #timetotalk and #timetochange. CLAHRC WM researchers are doing their bit by talking and listening to people that use the services and working in partnership with them to deliver change. By working ‘with’ young people, patients and the public, rather than ‘to’ or ‘for’ them, CLAHRC WM has demonstrated the value of meaningful patient and public involvement. Not only is the research undertaken relevant: people using the service have had a key input into the way research is shaped and delivered. Involving people at every stage at the research cycle has benefits including healthy participation rates and widespread dissemination. Most importantly, partnership with patients and the public has led to outcomes that are suitable and of benefit to people using the service, resulting in better care. CLAHRC WM is doing its utmost to ensure that we are removing stigmas to mental health and enabling people to access the right treatments and therapies as soon as possible.

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