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15 organisations and groups have been awarded £1,000 each to support their work to involve patients and citizens in research and healthcare, as part of the annual EMAHSN Patient and Public Involvement (PPI) Fund.
The funding aims to support health, social care, charities, voluntary and third sector organisations and groups to involve patients and citizens whose invaluable lived experience will inform innovation and transformation across the East Midlands.
Following an application and selection process, 15 organisations and groups from across the county were successful, including PPI groups representing individuals with learning disabilities and autism, cancer, long term conditions, bereaved parents, young carers and survivors of COVID.
EMAHSN first launched the fund in 2015 in recognition that many groups operate on an entirely voluntary basis and find it difficult to cover even basic costs such as travel and members’ out-of-pocket expenses. The scheme aims to support groups with additional funding so they can empower and activate patients in being involved in shaping health services.
In a time where physical interactions and meetings may not be possible, some groups have outlined that they will use the funding to maintain their ability to meet virtually and improve their digital presence. Others will use the funding to support their wider promotional activities and cover expenses of volunteers and logistics.
Deborah Main, Secretary from Victoria and Mapperley Practice Patient Participation Group (PPG), said “Our PPG applied to the EMAHSN PPI fund to cover the costs of a Zoom subscription. During the Covid-19 pandemic we really wanted to continue engaging with our members safely and Zoom allows us to facilitate regular PPG meetings online rather than meeting in person. Our current PPG membership is in the region of 100 patients. We’re seeing Zoom as an opportunity to encourage more patients to get involved.”
Gillian Priday, Macmillan Clinical Nurse Specialist for Long Term Survivors of Teenage and Young Adult Cancer at Nottingham University Hospitals NHS Trust, said: “Our Cancer and Associated Specialities Youth Forum will engage with teenagers and young adults whose unique voice is often unheard in much conventional PPI work.
The personal growth and development participation brings to young people cannot be underestimated, helping them, services and helps us address inequalities. This funding will allow us to be creative in how we collaborate with this group and give us the opportunity to pilot different approaches to determine which is most productive for both the organisation and group members.”
Independent Chair of EMAHSN, Martin Hindle, said: “I always enjoy taking part in the selection process for this annual PPI fund. It is an opportunity to see proposals from inspirational organisations and groups who champion patient and public engagement and are committed to making involvement possible.
This money can make a huge difference and I am pleased we are helping to remove one of the barriers to their essential work. We had some exemplary applications and I look forward to hearing of their progress over the following year.”
Grants of £1,000 have been awarded to each of the following fifteen groups:
East Midlands Ambulance Service (EMAS) Patient Voice – A group of volunteers who provide a patient perspective on the way EMAS operate and helping to develop patient-friendly services.
Staywell Derby CIC– A community focused social enterprise, set up by a group of individuals with lived experience of mental health, addiction, homelessness and trauma – using this experience to support the wellbeing of Derby City residents.
Breathlessness Research and Service Development Group – A group aimed at improving breathlessness services and research for patients.
Centre for Exercise and Rehabilitation Science (CERS) Patient and Public Involvement Group – Group members help to shape CERS’ cardiac and pulmonary rehabilitation research projects and clinical services.
Learning Disabilities Talk and Listen Group – The group provide advice and consultation to services or individuals on the best ways to involve and provide services for people with Learning Disabilities at Leicestershire Partnership NHS Trust.
Patients living with multiple long term conditions group – A group for patients living with HIV (PLHIV) and one or more long term condition to encourage individuals to participate in research for more accurate representation.
Lincolnshire Neurological Alliance – An association of people and voluntary organisations with an interest in people with a neurological condition.
Northamptonshire Young Carers Service Steering Group – A group of Young Carers, Young Adult Carers and Former Carers using their shared experience to improve access to and engagement with services.
Cancer and Associated Specialities Youth Forum – Developed by Nottingham University Hospitals NHS Trust, this Forum will support East Midlands teenagers and young adults who are being or have been treated for a cancer diagnosis.
Covid-19 Survivors Group UK – A group supporting people who have had and survived coronavirus.
National Rehabilitation Centre (NRC) Patient and Public Involvement Group – Bringing together patients and the public to harness the experiences and ideas of those that have experienced rehabilitation to ensure the NRC is the best it can be for patients.
Nottingham City SPLAT – a self-advocacy group for people with learning disabilities and family carers.
Victoria and Mapperley Practice Patient Participation Group (PPG) – Representing patients’ interests and strengthening the relationship between the practice and its patients.
Young Carers and Parents Group – Run by the Carers Federation to support parents and carers to have their voices heard within the health and care system.
Zephyrs – A voluntary run project led by bereaved parents using their experience to support others.