National Voices has long advocated for greater involvement of patients in shaping innovation rolled out across the NHS. So we were excited when the NHS England/Improvement Accelerated Access Collaborative (AAC) asked us to gather from our members evidence of the greatest unmet needs of their beneficiaries. The aim being to use this information to inform decisions made by the AAC on which innovations to prioritise for roll out across the NHS.
I approached this work with some trepidation. A new member of the National Voices family, this was my first project. I had heard a lot about the need for more emotional support so was expecting a tsunami of pleas for just that. But the evidence sent was much more complex, more nuanced than that. People with many different long-term conditions want help coping. Coping with multiple appointments, healthcare professionals, medications and treatments. Coping with everyday life admin.
Innovators may in the past have developed gadgets and technological solutions to specific clinical needs, or to speed up care pathways for NHS providers, but what patients really want is support to continue living the life they know whilst managing one or more long term conditions. Yes, that includes emotional support but there’s more to it than that. Yes, support is needed by patients, but also their families and carers.
I joined the National Voices family in summer last year, having changed the focus of my work to allow me to manage my eldest son’s long-term condition. So these results made complete sense to me. But to bring about real change for patients, their families and carers, we also needed to help innovators understand their role in meeting those needs.
Our report published today highlights 4 cross cutting themes from all the evidence we received. No matter what the long-term condition:
- Patients and healthcare providers need better information at first diagnosis and during early months coming to terms with a condition
- Patients want to be treated as a person, rather than a series of conditions
- Patients need practical support with life admin
- Families and carers need their own information and support
Our hope is that we have presented our findings in a way that helps focus the minds of innovators on meeting these needs. There is such potential for patients to play a bigger role in managing their long-term conditions and for patient charities, peers and the wider community to support them in that. But that doesn’t mean that patients should be left to their own devices. We need to rethink how statutory services can work with patients, charities and the wider community to help patient, their families and carers cope. We ask questions in our report that we hope will start that conversation. It won’t be easy, but we believe that if we can help shift the focus of innovators to looking at how people really interact with services, where the interface is between their health and their lives, where good and bad quality of life is taking shape, then they could have a real impact on health outcomes.