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15 groups have been awarded £2,000 each to support their work to involve patients and citizens in research and healthcare innovation and transformation.
Applications were welcomed from health, social care, charities, voluntary organisations and groups that encourage public involvement in health and care innovation, transformation and improvement. Groups that represent the involvement of seldom heard and underserved communities were encouraged to apply. The 2022 awards were in memory of Veronica Price-Job, who was one of our Patient and Public Involvement Senate Co-Chairs who sadly passed away. Veronica was a passionate advocate for health inequalities and integrated care. To honour this, we particularly welcomed applications from groups who:
Find out more about the winners and what the fund means to them by expanding the sections below.
For queries regarding the Public Involvement Fund contact This email address is being protected from spambots. You need JavaScript enabled to view it.
Grants of £2,000 have been awarded to the following 15 groups:
1. East Midlands Sickle Cell and Thalassaemia Network (EMSTN) – People with sickle cell and thalassaemia require specialist care throughout their lives. This group works to provide specialist care to those with sickle cell disease, working with local Haemoglobinopathy teams within their network. EMSTN aims to ensure all patients can access treatment close to home.
“We are thrilled to have been awarded the funding for the East Midlands Sickle Cell and Thalassaemia Network (EMSTN). The money will allow us to put on a roadshow to introduce our patients and their families to our new welfare service that we will be piloting in conjunction with Citizens Advice Leicestershire. Given the current economic climate, the need for help and advice is more acute than ever and we hope to be able to support many individuals and families that require social assistance alongside their healthcare needs.” Jodie Port, Haemoglobinopathy Co-ordinating Centre Network Manager, East Midlands
2. Borderline Arts – A group run by volunteers who use arts to engage communities and healthcare staff to raise awareness of Borderline Personality Disorder to reduce stigma and isolation.
“Thank you to the EMAHSN for approving funding for us at Borderline Arts. We are all absolutely delighted to be receiving this grant. It will not only help us enormously to continue maintaining our services to those who really need and appreciate it, but will provide a much-appreciated boost for our trustees and volunteers regarding the constant quest and worry about raising funds to cover our costs. It is particularly welcome and appreciated after the difficult covid years when fundraising was so severely curtailed.” Pauline Shephard, Charity Secretary
3. Healthwatch Rutland – Aims to ensure NHS and social care leaders and other decision makers hear the public voice and use feedback to improve health and care services.
“We are delighted to be awarded this funding; it will support our work to establish a brand-new volunteering programme of Healthwatch Community Champions in Rutland. The funding will be used to train and equip a new network of champions to connect with their communities, sharing NHS health and social care information and listening to vital feedback from those around them. These views can then be used to shape and improve services for local people.” Amy Crawford, Community Engagement Officer
4. Diabetes Self-Help Group – A self-help volunteer led group providing a forum to share wisdom and inform research and education for South Asian communities living with diabetes and co-morbidities.
“I am writing on behalf of our committee and group members. We are very pleased that our application is successful - it is amazing. The EMAHSN Public Involvement fund will help us to support those who are unable to be reached by the healthcare system. We will be able to educate and support more people with Diabetes and other illnesses who will be able to manage their health and well-being to reduce long-term, life-threatening conditions.” Dr Sonal R Bhavsar, Project Lead
5. University Hospitals Leicester (UHL) Informed scan website – UHL saw a challenge around community engagement and developing accessible and acceptable information to communicate medical radiation risks, as there is a legal and ethical duty to inform patients of the risks and benefits associated with imaging with ionising radiation (e.g. x-rays and CT scans). One of the potential risks is cancer induction years later. However, there are currently lots of issues around how best to inform patients of these risks due to a lack of clinician knowledge and perceived issues around how patients react to information about radiation and cancer induction. To respond to this, UHL designed a website. However they want to ensure their communication is accessible for non-English readers, young people and those with learning and sensory impairments.
To address these challenges and enhance the inclusivity of their communication, UHL is contemplating incorporating multilingual options and user-friendly interfaces tailored for various age groups and abilities on their website. Exploring partnerships with pharmaceutical companies in France, such as those selling Amoxicillin https://website-pace.net/acheter-de-lamoxicilline-en-ligne/, a commonly used antibiotic, could provide an avenue to distribute information about safe medication usage and its relation to radiation treatments, potentially bridging the gap between patient understanding and medical necessities. This approach aims to create a holistic patient education system that goes beyond the conventional boundaries, ensuring comprehensive care and information accessibility.
“We are delighted to receive this EMAHSN fund, which will help improve access to our website and communication highlighting important messages about medical radiation risk to patients www.informed-scan.com. Your fund will enable us to involve diverse communities across Leicestershire to help co-design information for non-English speakers, children and their carers, and other people who find the current information format inaccessible. Our improved resource will raise public awareness within our region and country-wide.” Lizzie Davies, Head of Leicester Radiation Safety Services
6. Highfield Rangers Football Club - Pamela Campbell-Morris Health Awareness Alliance - Pamela Campbell-Morris was a formidable community activist, who championed public involvement and health equity for the African Caribbean communities. She sadly died last year. To continue her legacy this group focuses on prostate cancer awareness within African Caribbean communities. Find out more about their campaign here.
"Thank you so much. The Pamela Campbell-Morris Health Awareness Alliance was set up in memory of Pamela, a well-known and prolific champion for improving the health of underserved groups, in particular the African and African Caribbean Communities, who sadly passed away on 29th June 2021. This funding award will allow us to keep Pamela’s legacy alive amongst our communities, particularly her passion for raising awareness of the increased risk of prostate cancer amongst black men, who are 2-3 times more likely to develop this than their white counterparts. It will help us re-start the Play Domino Talk Prostate Campaign, which led to an increased awareness within the African and African Caribbean Communities.” Donna Richardson, ARC (Applied Research Collaboration) East Midlands Director
7. Communities Food and Wellbeing Hub - A GP identified that local communities facing food poverty are at greater risk of diabetes, hypertension, and stroke, and were not accessing preventative health support. This hub seeks to work with community volunteers to target those most at risk including BAME communities.
"This funding will make a huge difference to our public involvement work. Over the Covid period, several communities have been disproportionately affected and we are leading programmes for low-income communities living in food poverty inclusive of Asian, African, African-Caribbean and food-poverty communities to access services and support. The voice of and involvement of community users and patients will enable us to do this". Annette Kenningham, GP
8. K2 Healthcare Primary Care Network - A collaboration of GP practices that supports people with chronic back pain and long-term pain management. Using population health and data intelligence they target patients most at risk with poorer experiences which supports better patient outcomes.
“This EMAHSN Public Involvement Fund will help leave our preconceptions at the door and let the people we’re working with tell us ‘What matters to me’. This funding will allow us to try something new that makes a difference, that would otherwise not be available. We look forward to helping our group find their way.” Darren Altus, K2 Director
9. Lincolnshire Integrated Care Board (ICB) Health Inequalities Involvement Group - This group targets people from farming and rural areas, to address health inequalities and improve outcomes, especially for people in coastal communities.
“We are delighted to receive the funding from EMAHSN. The monies will help us to improve our connection with communities who live along the coast in Lincolnshire. The activities will encourage participation and help us to understand some of the challenges that our residents experience when accessing health services.” Steph King, Strategic Communications and Engagement Lead Manager, Lincolnshire Integrated Care Board
10. STORKS (Striving Towards Ongoing Research Knowledge and Skills) - Women and birthing people – including those from lower socio-economic groups and BAME communities, are less likely to get involved in MatNeo studies . STORKS gives women from diverse backgrounds a voice in setting research priorities which will inform transformational care.
“We are very excited to have been chosen for the PPI award. We endeavour to make Maternity Research more inclusive to provide a broader representation of the birthing people we recruit at Nottingham University Hospitals. This award will allow us to reach out and collaborate with vulnerable groups in society whose voices often get lost in the masses to aid in producing better clinical outcomes and reduce health inequalities that are ongoing in maternity services.” Josh Shepherd, Research Data Clerk
11. Learning Disability Focus Involvement Group (Nottingham West PCN) - Health inequalities facing people with a learning disability are stark. Adults are three times more likely to die from an avoidable medical cause than the general population and experience poorer physical and mental health. This PCN will plan accessible interventions to support people with learning disabilities.
“Nottingham West PCN is delighted to have been awarded this EMAHSN PI Fund. It really will make a significant impact to our public involvement activity - supporting people with learning disabilities to have their voices heard, to influence decision making that directly affects their health and wellbeing and to achieve the best possible outcomes and life experiences. Thank you EMAHSN for your support in helping us to achieve our goal of true representation and co-produced services for all of our community. We look forward to sharing our successes with you in the future”. Clare Watson, PCN West Service Specification Lead, Primary Integrated Community Services Ltd
12. Dementia, Frail Older People and Palliative Care PPI – This is an existing group that offers advice and guidance to research studies. They are now looking to explore and have a better representation of ethnic minority groups as data shows that people from BAME backgrounds have worse dementia outcomes than those with white British backgrounds.
“This funding will allow us to organise a PPI and stakeholder events aimed at bringing together voices from ethnic minority communities. The aim of this would be to understand how people from ethnic minorities would like to be included in research and to identify the barriers to being involved in PPI and Research. We will use this knowledge to develop a PPI strategy that will include people from ethnic minorities.” Louise Howe, Research Assistant, Occupational Therapist and PhD Candidate, University of Nottingham
13. IMPACT East Midlands Provider Collaborative - Learning Disability and Autism Voices Group – The IMPACT East Midlands Commissioning Collaborative Involvement Team bring together people with lived experience of secure mental health services, learning disabilities and/or autism, who have left secure mental health services and are now in the community. The group informs transformational change in the transfer process.
“We are thrilled with our award from EMAHSN! It will enable the IMPACT Involvement Team to ensure that improvements to the Learning Disability and Autism care pathway in secure mental health care across the East Midlands are fully informed by and co-produced with service users and family members who have been through the system and are now in the community. This important work will contribute to improvements in care quality and timely discharges from hospital plus better care packages in the community.” Sam Tema, Involvement Lead IMPACT
14. Support ME (Minority Ethnic) - This group led by ethnic minority mums and a pool of volunteers from different ethnic groups aims to work with maternity and neonatal services to address birth trauma, perinatal mental health, and isolation. Support ME also works to make improvements in services.
“We are delighted to receive funding from EMAHSN to hold focus groups in both English and Polish with pregnant mothers in Nottinghamshire. We will work in partnership with Sherwood Forest Hospitals Maternity and the outcomes of the focus groups will inform improvements in maternity services. This project fits within Support ME's mission to make maternity experiences safer and more positive for all women, especially women from diverse backgrounds.” Nadine Otting, Project Lead
15. Empowerment for Heya - Newly arrived communities need time to transition and understand how to access healthcare services, particularly when facing communication and cultural barriers. Heya is a group led by Arabic Women who support access to health care services.
“This fund is very important to our members and will be a vital resource for us to facilitate sessions for them, so they can have the opportunity to hear the latest information and to ask the ‘burning’ questions they need to ask, in their own language, and in a safe, supportive environment.” Marwa Shebl, Empowerment for Heya
Last year we awarded grants of £1,000 to the following 15 groups:
1. East Midlands Quality Checker and Guardian Improvement Programme - A group of professionals, carers, family members and services users that work together to improve quality of care in residential, supported housing, respite and domiciliary housing for people with learning difficulties.“With this additional income we will recruit and train local people with lived experience of learning disabilities and adult social care, to become part of our Quality Checkers and Ambient Guardians teams. Working in partnership we will drive up quality, provide a voice for those supported and ensure that individuals in our care lead happy and fulfilling lives.”
2. First Steps Eating Disorder charity – First Steps Eating disorder charity provides evidenced based therapeutic 1:1 and group recovery services working with the NHS. The funding will help them to develop a patient leaflet to help people affected to manage their mental health during fasting festivals.
“These funds will help us achieve our goal, widening our reach and improving inclusivity and accessibility as we aim to bring together those from our local communities, the health and social care, and third sector to share ideas and wholly co-produce our next booklet, managing your mental health during fasting festivals.”
3. Derby Community Parent Programme Community Interest Company - A group that is run by volunteers from the local community supporting vulnerable expectant mothers, taking referrals from health and social care and working with Royal Derby Hospital. They feed into a health forum and reach out to diverse communities including through their Bump to Baby coffee mornings.
“The money will allow us to increase the amount of Bump to Baby Coffee Mornings delivered across Derby by our trained volunteers. These provide a safe, supportive, and non-judgmental place for new and expectant parents to share their voice and experiences, not just with us but the professionals involved in their care… and of course meet other parents over a hot cup of tea! It will also allow us to increase touch points for partners and fathers whose opportunities to communicate with professionals throughout the perinatal period will have been significantly impacted by COVID-19.”
4. The Derby West Indian Community Association Elders’ Forum - The forum engages with older people from the black community working on how to develop good practice with service providers and users of social care in the community, especially in care homes. The funding will help them to run more focus groups.
"This PPI fund will allow us to research into understanding methods of good practice for minority communities in an adult social care setting. Our work will put the patient and carers first and allow their views to shape a system for all in the future through open discussion. Inclusive and culturally appropriate care should be available to all, and we hope our work, sponsored by the 2021 PPI Fund, can start illustrating what this looks like."
5. Chesterfield and Dronfield PPG PCN Alliance - A group of Patient Participation Groups covering 5 medical practices working with Joined Up Care Derbyshire, PCNs and Healthwatch will use the funding to attract more diverse membership.
“A group of Chesterfield and Dronfield PPG’s (patient participation groups) have committed to improve the way that patients can be informed and influence the provision of medical and social care. We believe that all patients should feel they are informed and that their voice will be heard and valued both at their General Practice and the wider Derbyshire level. This grant will help us create a system that involves traditional methods of communication with patients but exploits the vast potential of social media.”
6. Black and Asian Baby Loss PPI and Research Collaboration - The group will look at and address the inequalities in healthcare access for this community by establishing a PPI network to gather evidence on how to tackle ethnicity related perinatal mortality. The funding will enable them to run focus groups and produce culturally appropriate resources.
"The Centre is delighted to receive this funding to explore how we can improve outcomes for women and babies in this area. We hope that the project will share light on novel evidence on racial inequality and its impact on maternal and infant mortality. We look forward to working in partnership with local women from Black and Asian backgrounds alongside the national charity- Sands, which provides support to anyone affected by the death of a baby.”
7.Carers Matters - The group is working with LOROS Hospice to improve the experience of family and carers who look after someone with frailty or terminal illness at home or in a care home. The group wishes to develop new ways to share knowledge and expertise of peers and professionals.
I am delighted that through this AHSN support we will be able to work with family carers of people who are very frail or have a terminal illness so that we can make this very difficult but precious time as stress-free and enjoyable as possible. A key focus of the group will be to develop new ways of sharing the knowledge and expertise of their peers (those that have been through similar experiences) and the knowledge of professionals about services, equipment and of what may lie ahead.”
8. NHS Lincolnshire Citizen Panel - A panel that gathers insight and feedback from Lincolnshire residents to explore their views on health services and respond to their needs, ensuring that patients and the public are at the heart of decision making. The funding will help them to reach people who are not typically represented currently.
9. Asha Deep Project - Asha Deep came together to provide an urgent response to the pandemic for Asian communities. They identified that some of the residents coming forward for support were eligible for preventative diabetes support but had not been accessing it. This funding will help the group to film some exercise videos and to evaluate a pilot programme they are running to raise awareness of preventing and managing diabetes specific to the Asian communities.
“We are very pleased to have received the PPI award. The PPI work will make a great difference to the public involvement work we are undertaking. Over the Covid period Black communities have been disproportionately affected and we are leading programmes for Asian, African, and African-Caribbean communities to access services and support. We know that there has been low uptake of preventative health services and we want to affect change for both communities and service providers. The voice of the community will enable us to do this.”
10. Mosaic Fibromyalgia Patient Participation Group - This group collaborates between the Mosaic Pain Service and those suffering from fibromyalgia linking in with healthcare professionals. They would like to use the funding to run focus groups as part of a co-design process to improve services.
"The MOSAIC Pain Team are delighted to have been successful in this award. The patient and public participation over the last few years has significantly influenced the developments within the service. This award, to the fibromyalgia patient and public participation group, will allow us to build further on this work and to be confident that the service develops in collaboration with service users. The Team are extremely grateful for the award."
11. Nottingham Osteoporosis Patient Support Group - A patient/carer group which is involved in healthcare organisation including awareness raising campaigns and PPI involvement in research projects. The funding will help them to further develop their PPI work through video conferencing, phone lines and promotional materials. “The Nottingham Osteoporosis Support Group are especially delighted to be awarded £1000.00 funding from East Midlands Academic Health Science Network in July 2021 as Covid affected much of what we do. This marvellous funding which we are so proud to have been awarded will enable us to reach out to further improve Patient and Public Involvement in research related to the disease, increase our support services and achieve greater involvement with the clinical and care teams that provide osteoporosis services across the East Midlands.”
12. Patient & Public Involvement at John Eastwood Hospice and Bassetlaw Hospice - The funding will help to establish a PPI group to represent the community and support palliative care for patients through involvement in deciding research projects, service delivery and improving patient experience.
“We will use the fund to ensure our local community contributes to deciding the research we conduct and the services we provide at John Eastwood Bassetlaw Hospice.”
13. Rushcliffe Assembly of PPGs to Innovate and Develop (RAPID) - A new group involving Patient Participation Group chairs, Primary Care Network managers and PartnersHealth (GP Federation) among others. The funding will help the group to promote PPI and wider participation in healthcare across Rushcliffe.
“PPI funding award will mean that RAPID (Rushcliffe Assembly of PPGs for Innovation and Development) will be able to resume and expand our direct patient engagement work which has been a feature of how Rushcliffe PPGs operated pre-COVID. Now we can fund display materials, stands at local events and our annual patient conference at which up to 100 local residents share their experiences and ideas to improve health and care services. With the range of services in primary care and the wider integration of services and care accelerating locally, this is an important time to reach out to the residents to ensure they can help us shape what this enhanced offer looks like .”
14. Vanclaron Community Interest Company - The Community Interest Company tackles health inequalities and empowers communities to participate in decisions and policies concerning their health.
“The funding will support us in our patient public involvement work, enabling us to continue and expand our activities to tackle health inequality within the vulnerable, marginalised, and hard to reach communities, including BAME, refugees and Asylum seekers, those experiencing socio-economic deprivation, new and emerging communities.
The voices of BAME patients are hardly represented in health decision making bodies as there are very few BAME-led organisations. We equip our service users to become ‘expert patients’ – empowering them to become active partners with the healthcare providers in decisions about their own health and to partake in health/social care public consultations, research and service evaluations, enabling them to get their voices heard and involved in improving health and/or social care.”
15. Young Adults Pain – focus group to redesign service pathways based upon lived experience - The group is working with young adults aged 18-25 who experience chronic pain to co-design pathways within the pain service. The funds will be used for recruitment, promotion, venue/refreshments, travel and out of pocket expenses as well as developing literature and learning materials.
“This is a fantastic opportunity for young people in Nottinghamshire to have their say and co-develop their local pain, ME and chronic fatigue syndrome services with NHS service provider Primary Integrated Community Services (PICS). This funding will enable PICS to facilitate focus groups and engage with an often under represented group, to help to make sure that the support offered meets the needs and addresses the concerns of young people managing long-term conditions.”
Read the news story here.
In 2020, we awarded funding to the following groups:
Grants of £1,000 were awarded to the following 15 groups:
1. 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.
2. 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.
3. Breathlessness Research and Service Development Group – A group aimed at improving breathlessness services and research for patients.
4. 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.
5. 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.
6. 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.
7. Lincolnshire Neurological Alliance – An association of people and voluntary organisations with an interest in people with a neurological condition.
8. 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.
8. 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.
10. Covid-19 Survivors Group UK – A group supporting people who have had and survived coronavirus.
11. 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.
12. Nottingham City SPLAT – a self-advocacy group for people with learning disabilities and family carers
13. Victoria and Mapperley Practice Patient Participation Group (PPG) – Representing patients’ interests and strengthening the relationship between the practice and its patients.
14. 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.
15.Zephyrs – A voluntary run project led by bereaved parents using their experience to support others.
Patient and Public Involvement (PPI) is the way in which patients, carers, service users, carers and the public can:
PPI involves health and care professionals and patients, the public, carers, service, and communities working together. The onus is on professional proactively working 'with' the public, not 'to', 'about' or 'for' them.
For this funding, PPI is more than being a research participant in a study, receiving care or being a member of a self-help or support group. It is more proactive, takes place often and should make a difference to healthcare service transformation and improvement.