NHS@75 – patient, carer and public voice at the heart of the conversation

As proud members of the NHS Assembly – the advisory group that brings the patient and carer voice together with stakeholders to advise the NHS England’s leadership – we are excited to have been asked to draw together collective insights on the NHS today, its recent history, take stock of our latest learnings and highlight future opportunities and challenges.

The NHS@75 work aims to deliver a short public report ahead of the 75th birthday, which we will then use as part of our ongoing role advising NHS England. The Assembly’s work is being informed by latest patient and carer experience.

Over recent weeks we have encouraged patients, unpaid carers, staff groups, and the wider health and care community to share their thoughts through our conversation guide. We are gaining latest patient insights from partners including Healthwatch England, the Patients Association, Race Equality Foundation, Carers UK, National Voices, Richmond Group of Charities, and others.

The newly increased patient, carer and public voice (PPV) membership on the Assembly will then help to ensure that patient and carer voices are at the heart of this report.  As PPV representatives and advocates on the Assembly, we will bring the following points to the table:

  • Over the last few years, we have seen a move towards greater patient participation in their own care and designing health services. This marks a welcome shift which has been long advocated by patient champions and organisations. Our own membership of the NHS Assembly demonstrates that patient and public involvement is increasing steadily. But this is a journey, and if the destination is true, we have further to travel to achieve meaningful patient partnership for everyone.
  • While patient involvement is well recognised in some parts of the NHS, far too many are not fully involved in their own care. Patients with learning disabilities and/or mental health conditions still do not have the support required for full involvement and access to services. Full involvement with patients and unpaid carers is one way to help the NHS deal with the pressures on services which can result in unmet need or patients being cared for in units far from home.
  • There are an estimated 5 million unpaid carers in England and Wales, and their unseen work saves the Government £162 billion a year: that’s the equivalent of funding another NHS in England and Wales. Unpaid carers are key to involving patients in their own care, with their contribution a golden thread that brings health and care together. Unpaid carers need to be fully recognised as partners in patient involvement with their contributions heard and acknowledged rather than feeling ignored on top of everything else they are coping with. The unhappy experiences of so many patients and unpaid carers at the height of the pandemic shows what can happen when policy making fails to involve them in finding tangible ways to accommodate their needs. We know when we get shared decision-making right, we can really improve the lives of patients. The Fuller Stocktake report highlighted best practice, such as the codesigned Integrated clinical pharmacy service in Wirral connecting clinicians to support patients more effectively.

As patient advocates, we are making the case through NHS@75 that now is the time to see a shift so that a commitment to the full involvement of patients and carers and shared decision making becomes the fundamental default position of all services.

As we emerge from the pandemic, collaborative thinking and decision-making must be at the heart of our work. Together we can continue to use our voices to improve the lives of patients and carers.

Mrs Yvonne Newbold

Yvonne Newbold is a founding member of the NHS Assembly, and a learning disability champion, who earned the National Learning Disabilities/Autism Lifetime Achievement Award in 2018.

Ms Helen Hassell

Helen Hassell is a parent carer, a lived experience partner, and an active member of the My Life Choices co-production group with Nottingham and Nottinghamshire Integrated Care Board. She has been a member of the NHS Assembly since it was founded in 2019.

Rachel Power

Rachel became Chief Executive of the Patients Association in 2017, bringing with her over 20 years’ experience of health and social care in the not-for-profit sector.

She has overseen a significant period of change at the Association. Rachel is a member of the NHS Assembly and also a member of several national health bodies.