For the public, good healthcare is about relationships

John Hall gives an insight into the revelations from Engage Britain’s recent People’s Panel where members of the public discussed health and care challenges faced across the country.

Can listening to the 100 randomly chosen members of the public in Engage Britain’s People’s Panel teach experienced politicians and NHS managers anything about reforming the health and care system?

A lot more than I expected, says ex-DHSC strategy director John Hall. By helping us understand both what matters to the public and why it matters, reforms have a better chance of delivering visible improvements which will make a difference to our lives.

Developing practical policies starts with what matters. As a sometime sceptic of deliberative events, I was struck by how Panel members saw health and care as fundamentally about relationships. We want sufficient well trained, valued and rewarded staff to ensure safe high-quality care. We think continuity of those relationships is crucial to our quality of life. We often feel enormous gratitude and affection for the carers we were happy to clap for. We want them to receive a fair deal and be treated with dignity. Jobs which do so much good should be good jobs. But panel members also shared shocking examples of language and behaviour by staff and stories of how some believed they received worse care because of who they were.

Waits for treatment are too long but simply interacting with the system often causes people anxiety. People spoke of their exhaustion at having to co-ordinate their own care. Not knowing where to turn or what is happening with our care creates real anxiety and stress. Improving how the system communicates with us will be ever more vital with waiting lists for treatment at historic highs.

We want the system to see us as a whole person. With more of us living with multiple chronic conditions, this is a major challenge for a system of siloed organisations and highly specialised professionals. Yet almost all our data and accountability focuses on individual patient episodes or particular institutions not on whether people get the holistic support they need to live their best lives.

Panel members think social care matters in its own right. Fixing social care is not just about who pays or protecting the NHS. The potential of great social care to transform people’s lives inspired them (“the NHS saved my life but social care allows me to live my life”). And the devastating impact of failures in care was seen as an injustice which resonated far wider than those with direct experience of the system. The stress of the needs test (whether people qualify for care) was at least as distressing as the means-test (who pays for care). People spoke of having to fight for support and their terror that annual reviews would mean services vital to their quality of life were withdrawn on financial grounds.

Panel members cared deeply about inequalities in access to care, especially for those who find it hard to navigate the system themselves. This was seen as an injustice. They were generally more sanguine about inequalities in outcomes, which they thought were partially linked to people’s choices.

Poor mental health was long associated with social stigma. People often lacked the language and confidence to discuss it. But the Panel prioritised improving support for our mental well-being above other clinical conditions. Not only because they thought it mattered in its own right. But mental health affects virtually all our interactions with the system. Shorter waits for mental health treatment are important. But Panel members wanted more societal support to maintain our emotional well-being.

Panel members saw the NHS as something precious. “Free at the point of use” still resonates strongly. But they worried that care might not be there when they needed it. They were not averse to paying higher taxes to fund better health and care. But they want those taxes to be fair. And they want a better system not just a bigger one and are frustrated by waste. Everybody had their own examples to share. But given the chance to debate and reflect, the panel worried that a fragmented system which communicates badly with itself and the public is itself the principle source of waste.

But the clearest message for politicians reforming the system? Stop talking about abstract reforms as if they are an end in themselves. The public have a real thirst to learn from other countries about the practical changes which would make things better. And they want the health and care services they receive to be better joined up to meet their needs. But unless politicians communicate to the public the practical difference that their reforms will make to the health and care support people receive, even sensible reforms will struggle to engage the public.

A version of this article was originally published by the Health Service Journal in February 2022. To read the full paper, ‘Involving People In Policymaking’, click here.