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| Fuse colleagues advocating the words of public contributors in mental health research |
Our work set out to answer a vital question: How can we use the resources we already have to do more for those who need it most?
To find out, we engaged with a wide range of voices across the North of England: people with lived experience of SMI, those who commission services, GPs, and frontline staff. We wanted to understand what support is currently available, what the biggest challenges are in accessing it, and how services could be improved. This collaborative approach gave us deep insights into what is working and where real change is urgently needed.
At the heart of our project was a community advisory group made up of individuals with lived experience of SMI. This group worked alongside us from start to finish. They helped shape our questions, guide our focus, and ensure the findings reflected what really matters. Their input was not just advisory - it was transformational.
Together, we identified the most important messages from the research and created clear, compelling headlines to communicate them. We also co-wrote a letter to Prime Minister Sir Keir Starmer, urging the new government to take immediate action. With the recent announcement that NHS England will be abolished, we believe this moment is critical. There is a unique opportunity to rethink how health services work for people with severe mental ill-health, and we must not let it pass us by.
"We need you to be an advocate for those living with poor mental health and be compassionate and vocal in committing to service improvements."
Quote from the letter to Prime Minister Sir Keir Starmer
Please read more about the WHOLE-SMI programme and access our findings here.
If you would like to get in touch, please contact Professor Emily Oliver.
Because no one should have to wait for the support they deserve.
Read the full letter below
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WHOLE-SMI: Wellbeing and HOListic
health promotion for people with
Severe Mental Illness
Rt Hon. Sir Kier Starmer MP
Prime Minister
10 Downing Street
London
SW1A 2AA
Dear Sir Kier Starmer
Who we are
We are the WHOLE-SMI community advisory group and research team in the Northeast of England and North Cumbria (NENC). We have been working together to explore how we can better support holistic health for people living with severe mental ill-health.
What we need
People with severe mental ill-health experience higher mortality rates at a younger age and have poorer quality of life. The former government scrapped the long-awaited 10-year mental health plan, and along with budgets and staff burnout, services are stretched thin. Too many people struggle to access services, especially in rural and coastal communities. Waiting lists for referrals are too long. We are too familiar of the tragic consequences within our communities when adequate support is not readily available.
We need you to be an advocate for those living with poor mental health and be compassionate and vocal in committing to service improvements. We appreciate the work being done to reach more people through annual physical health checks, but we believe these should be the “floor and not the ceiling”. More consideration needs to be given to the “what’s next?” and follow on from health checks.
More holistic and integrated care
People are unique and their differences should be celebrated. But this means that people experience things differently and might need different things at different times. Too often we are faced with a “one size fits all” or an overly medicalised approach that does not work with us in a holistic way. Our current siloed ways of working in mental and physical health are not efficient and can also make things worse for those trying to access services. We would like to see more work done to bridge the gap in communication within and between services, so that people do not have to repeat triggering past experiences and traumas.
Support living well
There are still strong negative stereotypes and stigma around poor mental health. More proactive and preventative support is needed to normalise periods of mental ill-health, as well as promoting the opportunity for people to live well with severe mental illness as with other chronic conditions. We want services to help support people to live healthier daily lives and reduce the amount of people reaching a crisis.
Support our carers
We also need you to advocate for our carers. Carers are the eyes and the ears for their loved ones and help them to live well in the community whilst often battling very debilitating mental health problems. Additionally, unpaid carers across the UK have a combined economic value of around £184.3 billion per year, yet too often they are shut out from important information and have very few rights towards supporting their loved ones. We know carers that are worried, tired and distressed at not being able to help their loved ones to the best of their ability and feel left out on a limb. We need better collaboration and communication links between service providers and carers.
Better prevention in the community
We would like to see more resources committed to people challenged by their mental ill-health to give everybody a fair opportunity to thrive in everyday life, to live longer and better within the community and to stay in (or return) to work. We need to move away from crisis-reactive approaches to more holistic and personalised ways of working that focus on preventative support, reducing inpatient admissions and waiting lists. There’s a lot of value in our community-led organisations that plug the gap in service provision; our Health Facilitators, Social Prescribers, our paid and unpaid carers and Positive Experience providers for example. We also need improved rehabilitation services for severe brain injuries, better menopause care around mental health, and better work with those interacting with the criminal justice system who have mental health needs. Please also really consider the impacts of what funding and benefit cuts or changes in access eligibility to support really mean to the people who rely on these services.
Amplify our voices
So what can be done? We would like government and senior health leaders to vocally and publicly highlight the need for better support for those living with severe mental ill-health. We would like you to challenge health leaders and systems to work in more integrated ways, supporting staff to find ways to creatively work with a wider range of providers to develop a cohesive system of care. Above all, please continue to listen to those with lived experience about their needs and challenges, and to those on the ground delivering the services. We know what is going on better than anyone. We need your help to make things better for us. We can do this together. We’ve got to take action!
Thank you for your time. It’s greatly appreciated.
Many thanks.
Yours faithfully,
The WHOLE-SMI Community Advisory Group and research team
c/o Newcastle University.
Contact via: emily.oliver@ncl.ac.uk
Who we are
We are the WHOLE-SMI community advisory group and research team in the Northeast of England and North Cumbria (NENC). We have been working together to explore how we can better support holistic health for people living with severe mental ill-health.
What we need
People with severe mental ill-health experience higher mortality rates at a younger age and have poorer quality of life. The former government scrapped the long-awaited 10-year mental health plan, and along with budgets and staff burnout, services are stretched thin. Too many people struggle to access services, especially in rural and coastal communities. Waiting lists for referrals are too long. We are too familiar of the tragic consequences within our communities when adequate support is not readily available.
We need you to be an advocate for those living with poor mental health and be compassionate and vocal in committing to service improvements. We appreciate the work being done to reach more people through annual physical health checks, but we believe these should be the “floor and not the ceiling”. More consideration needs to be given to the “what’s next?” and follow on from health checks.
More holistic and integrated care
People are unique and their differences should be celebrated. But this means that people experience things differently and might need different things at different times. Too often we are faced with a “one size fits all” or an overly medicalised approach that does not work with us in a holistic way. Our current siloed ways of working in mental and physical health are not efficient and can also make things worse for those trying to access services. We would like to see more work done to bridge the gap in communication within and between services, so that people do not have to repeat triggering past experiences and traumas.
Support living well
There are still strong negative stereotypes and stigma around poor mental health. More proactive and preventative support is needed to normalise periods of mental ill-health, as well as promoting the opportunity for people to live well with severe mental illness as with other chronic conditions. We want services to help support people to live healthier daily lives and reduce the amount of people reaching a crisis.
Support our carers
We also need you to advocate for our carers. Carers are the eyes and the ears for their loved ones and help them to live well in the community whilst often battling very debilitating mental health problems. Additionally, unpaid carers across the UK have a combined economic value of around £184.3 billion per year, yet too often they are shut out from important information and have very few rights towards supporting their loved ones. We know carers that are worried, tired and distressed at not being able to help their loved ones to the best of their ability and feel left out on a limb. We need better collaboration and communication links between service providers and carers.
Better prevention in the community
We would like to see more resources committed to people challenged by their mental ill-health to give everybody a fair opportunity to thrive in everyday life, to live longer and better within the community and to stay in (or return) to work. We need to move away from crisis-reactive approaches to more holistic and personalised ways of working that focus on preventative support, reducing inpatient admissions and waiting lists. There’s a lot of value in our community-led organisations that plug the gap in service provision; our Health Facilitators, Social Prescribers, our paid and unpaid carers and Positive Experience providers for example. We also need improved rehabilitation services for severe brain injuries, better menopause care around mental health, and better work with those interacting with the criminal justice system who have mental health needs. Please also really consider the impacts of what funding and benefit cuts or changes in access eligibility to support really mean to the people who rely on these services.
Amplify our voices
So what can be done? We would like government and senior health leaders to vocally and publicly highlight the need for better support for those living with severe mental ill-health. We would like you to challenge health leaders and systems to work in more integrated ways, supporting staff to find ways to creatively work with a wider range of providers to develop a cohesive system of care. Above all, please continue to listen to those with lived experience about their needs and challenges, and to those on the ground delivering the services. We know what is going on better than anyone. We need your help to make things better for us. We can do this together. We’ve got to take action!
Thank you for your time. It’s greatly appreciated.
Many thanks.
Yours faithfully,
The WHOLE-SMI Community Advisory Group and research team
c/o Newcastle University.
Contact via: emily.oliver@ncl.ac.uk
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