Lay contributors and volunteers not only empower themselves, they bring unique insight, passion and commitment to the NHS, says Roz Davies
According to the recent King’s Fund report Volunteering in Health and Care, there are more than 3m people volunteering in health and social care in many different forms, from civic roles such as clinical commissioning group lay members and foundation trust governors to local community-building roles such as community health champions and patient leaders.
This active citizenship is a growing movement of people who “care and share” and who are connected by a passion for creating healthier communities and an NHS that values people.
The road to empowerment
Over the past eight years, I have been privileged to work alongside some of the most courageous, inspirational and generous people who have often overcome really difficult health-related life challenges and gone on to support other people and the NHS in a voluntary or civic capacity, transforming not just their own health but also supporting many others in their communities.
As we work together to overcome the complex health challenges we are facing, the idea of creating the conditions for more empowered patients and citizens, individually and collectively, is starting to materialise.
To unlock the potential of “people power” across the NHS, we will need to really understand why people get involved so that we are not simply engaging to tick boxes or suit the system or organisational needs, but we are also meeting the ambitions and needs of people. Only then can we begin to create a sense of shared purpose and responsibility.
Why people get involved
During my role as director of Altogether Better, I undertook a piece of research that looked at the continuum of how people in communities could get involved in creating a new offer for parents-to-be and new parents. We asked people what motivated them to get involved. They talked about sharing their own stories, wanting to improve the lives of people in their community, building their skills and experience, making friends and “making a difference”.
I asked some amazing active citizens to help me write this article by sharing some of their stories and views. Dawn is a chair of a local health forum, a lay member for a research design service linked to the National Institute for Health Research and a mentor for other people with long-term conditions. She wrote the following in response to the question: why do you get involved?
‘I will fight for patient, public and carers to have the same positive experiences and care I have’
“I am a person with cystic fibrosis who was at the end of life for nearly two years on non-invasive ventilation and 24-hours oxygen. I was given the fantastic gift of life five years ago when I received a double lung transplant. I have had complications where I am also an insulin dependent diabetic, have kidney impairment and also had a lobotomy. Yet, I still enjoy and lead a fun-packed life and am always eternally grateful to my donor and their loved ones and all the staff that have fought over the last few years to ensure I am still alive today and have such a fantastic quality of life.
“It is because of this I will fight for patient, public and carers to have the same positive experiences and care I have been so fortunate to have. Where mistakes are made, they must be learnt from and procedures and processes put in place to ensure it minimises the risk of it happening again. My passion and drive is huge and whatever is thrown my way, I will always remember all the staff, my donor and all those friends and family without whom I would not be the person I am today.”
We know from evidence such as Professor Jane South’s Altogether Better Community Health Champions and Empowerment Evaluation that volunteering in active roles such as community health champions is good for your health. The findings included increased confidence, improved self-esteem and self-belief, self-confidence to present in front of others, improvements in health and lifestyle, better awareness and knowledge of health issues and improved mental health and wellbeing.
Heroes committed to the NHS
During a secondment at NHS England (formally NHS Commissioning Board), I was involved in recruiting and supporting the active citizens who took on the role of CCG lay assessors. We had more than 650 applications, many incredible stories of people who had personal experience of the NHS as patients, carers, staff and partners. Even after many years of working in this area the courage, extent of altruism and level of commitment to the NHS stunned me.
‘I was stunned by the courage, extent of altruism and level of commitment to the NHS’
Suzi was a CCG lay assessor. She also writes and performs music and is an incredible advocate for creating a more powerful voice for people with mental health. She has bipolar disorder, which she manages with medication. Suzi first became an activist when funding cuts closed an art class she attended. Her frustration at being “only a patient not a participant” led her to get involved with Mind’s LiVE project.
This was just the beginning. Suzi then became one of the first 42 citizens to work alongside the NHS England helping to shape the future NHS. She has also helped to shape local mental health services with Mind and the local NHS and sits on the ‘warranting panel’ for approved mental health practitioners. This is what Suzi says about her roles:
“It has been very empowering and made me realise my voice is equal to the voice of people who do not have a mental illness… As a service user it is important for me to not only ask the questions not always considered by the healthcare professionals but also to use my judgement to ensure that a person is fit to represent someone in their deepest needs with high level care but also compassion to take the least restrictive actions.”
Creating a better NHS
It is really common sense that meaningful involvement of patients, citizens and carers in shaping services means that we will co-create a more appropriate and accountable NHS offer that better fits the needs and aspirations of the “consumer”. It is important to understand that the potential for involving people goes far beyond commenting on proposals, responding to surveys and providing insight for commissioning, although this all valuable in itself. Citizenship itself should be recognised as part of service delivery, part of how we “do health” in England.
‘We have a unique opportunity to co-create a people-powered NHS that belongs to the people’
Caroline – who is a brain injury survivor, person with disabilities, mother and inspirational community health champion shows us why. Caroline was left with a brain injury, visual impairment and limited walking mobility after a serious road accident. She found the electric mobility scooter limiting in image and mobility. So, she swapped it for a tricycle. She was then able to cycle anywhere, to school with her children, to visit a cherished bird sanctuary in the woods where she used to spend time with her late father and to meet friends for a coffee in the park. What is the impact on her health? Well, she used to go to the doctor every month and now has to get called up to go, once in two years.
It doesn’t stop there though, Caroline became a community health champion and after taking the “cycle for health” course, Caroline began her crusade to get more people with disabilities cycling. She has since supported and encouraged many people to take up cycling, and to illustrate her impact, here are the words of one of those people: Margaret is an older woman with significant mobility problems and poor blood circulation. She said to Caroline one day:
“You know, I take 20 tablets a day to help my depression and not one makes me feel as good as cycling in the rain with you.”
Caroline carried the Olympic Torch on her bike, has won the Pride of Yorkshire Award, met the Queen, written a chapter of a book, was involved in a pilot for individual budgets in her locality and she is now looking for opportunities to influence policy and practice.
The value of people
The Francis report has shown all of us the importance and value of people and voice in improving the system, understanding the need for a new settlement between patients and clinicians, citizens and the system.
‘Individual and community empowerment does not come free; it takes time, relationship building skills, knowledge and experience’
We now have a unique opportunity to co-create more empowering conditions where people have greater responsibility and control of their own wellbeing and where we are all able to live our lives to our full health potential. Where secondary, primary and community services working in a genuine partnership with active citizens who are caring and sharing their stories, skills, energy and ideas across their communities. The No More Throwaway People from the renowned Edgar Cahn, the American lawyer who started “time banking”, articulates this brilliantly.
Ghzala, an inspirational active citizen, really helps us to get to the heart of the value of people and citizenship. I first met her when she became a CCG lay assessor one year after her daughter Aisha died from a life-limiting long-term illness. Ghzala is also the chair of a carers’ community centre, a nurse and is currently training as a patient leader. Her approach to life is strength based and empowering.
Ghzala believes her experience of caring for her daughter and focusing on ensuring that Aisha had every opportunity to feel included and in control of her life has unlocked her own full potential. “From adversity comes creativity” is an understatement for Ghzala who draws on her own experiences and knowledge of caring for her daughter at home and working with the NHS to ensure that it did provide compassionate and empowering services for Aisha. She has great wisdom to share with us and is ambitious for the NHS.
Individual and community empowerment does not come free; it takes time, relationship building skills, knowledge and experience. But where people feel truly valued and heard, Dawn, Suzi, Caroline, Ghzala and many others show us that difficult issues can be tackled together and amazing things are achieved.
As we move into the implementation of the NHS reforms, we have a unique opportunity to scale this approach up across the system and co-create a people-powered NHS that belongs to the people.
A week in the life of a CCG lay member
Two weeks ago I found myself reminding some of our clinicians why people with severe enduring mental health and learning disabilities are more likely to die 15-20 years earlier than the rest of our community and why we have to do more to help them access vital primary health care. A key outcome for me is how we need to ensure our evolving CCG culture includes an absolute commitment throughout the organisation to “understand better the real impacts of our decision making”.
Our local hospital is one of those being investigated by Sir Bruce Keogh. We have a board-to-board meeting with them coming up and I really want to understand better how they are capturing their patient and service user voices.
Next up, an update on the CCG Integrated Plan. I’m leased to hear this is our only major strategic plan and will demonstrate how the CCG will truly jointly commission health and social care services. We are asking for comments from our countywide health and wellbeing board. I need to review the latest version of the plan to look for the opportunities for more local patient and service user engagement.
Great to see our chairman from our health forum committee at the session this afternoon. I really feel for them as he tells me again today that he and other forum members are inundated with work as part of their role on our patient, carer and service user committee.
“A few hours a week,” he tells me they thought it would involve, now, he adds, “it’s more like a few hours every day.”
We have just produced a reimbursement protocol for forum members. This is complicated as while it is acknowledged that their contributions are being valued by the CCG, the acceptance of such reimbursement, however small, will for some cause problems with benefits and tax liabilities, which will mean some will have to decline these payments. We must, however, as a minimum, ensure these fine people are not out of pocket in any way for the great work they are doing.
Our first proper board-to-board meeting with our hospital trust seemed to go really well. Recognition from all there that the mortality issues and the impending Keogh inquiry is a health economy-wide issue and is not a matter for the hospital alone to resolve. Assurances were requested and provided regarding the actions required to shift the culture of our health services to one of candour, openness and honesty; one where patients and staff are heard and that true quality of care and compassion prevails above all else.
Donna Telfer is a lay member at North East Essex CCG. Donna is keen to hear from other CCGs and lay members about their experiences and is in the process of setting up a national project where learning experiences can be exchanged. If you would like more information, please contact her at firstname.lastname@example.org
Roz Davies is director of community engagement at Healthbeme