Close the gaping gap between policy and people’s lived reality

What a time to be alive! NHS England is drafting the definitive plan to personalise healthcare. The Commons health and social care committee rejects an approach to integration that is based on an alphabet spaghetti of centrally mandated initiatives, and says patient experience is the litmus test for good integration. And now there is even the warm shower of some money raining down on these promising developments.

Our work as advocates for patients and users is done. The new NHS 10 year plan will make us the most integrated system in the world (health leaders don’t get out of bed for anything less) – we will figure out what to do about public health and social care later.  

We all (should) know that the gap between the now mainstream policy language of person centredness, and the lived reality of people using services, is immense. When policy language shifts in the right direction but the reality doesn’t, the net effect is a bigger gap. Some facts:

• Nearly one in five people with MS say their health and care professionals don’t work well together.
• 135 people with diabetes have a foot amputated every week. About 80 per cent of these amputations would be preventable with better foot care.
• One in five care providers were rated as inadequate or requiring improvement by the Care Quality Commission in 2018, this rises to one in four in dementia services.
• Multimorbidity appears 10-15 years earlier in people living in the most deprived areas of the UK.

The essentials

What does the 10 year plan, now being worked up by the NHS, need to contain in order to shift these numbers?

The lobbyists’ wish lists will be long as they have ever been, ranging from the glitzy (more high tech), to the aspirational (the NHS might start using email), and the ludicrous (artificial intelligence will step in where human intelligence has let us down).

Well, here is our insight as a group of large health and care charities: Start with how care needs to be different for the majority users of health and care services: those with long term conditions and the growing number of them who have more than one health problem.

And only then work backwards to any governance and structural questions that might need to be resolved. Don’t start with the structural reorganisation. In most places, the structural approach will use up leadership capacity (and crucially staff good will) before you have got anywhere near the user.

Start with how care needs to be different for the majority users of health and care services

Just think about how stroke care is being reconfigured: hospitals working differently with each other, even the politicised front door of emergency departments remodelled, without a single organisation being abolished or restructured.

Crucially, patient and user voice was central to this successful modernisation – and where users led the redesign (as in Liverpool) they made it clear that they are as interested in rehabilitation as they are in urgent care and that they value peer support as much as professional services.

There is no short cut to this place based, partnership building improvement work. If NHS reform over the last 40 years has shown us anything it is that you can change everything about how care is governed, structured and paid for, without changing anything about what this care delivers for people who need it.

Same old questions

Seen through this lens, the latest ground-breaking integration initiative that requires local leaders to rewrite their plans and snazzy up their slide decks masks nothing but the same old questions: Do the people providing my care know me and my preferences? Do they know who else is on the team? Do I have to repeat my story again and again? Does my plan for what I want survive the first collision with a ride in the ambulance or an emergency admission?

I am yet to meet a politician or NHS leader who wouldn’t agree that these are the questions we need to make progress on. But if we took this approach seriously, would we promise funding only to the NHS and not to public health and social care?

Would we focus organisational and political energy on a new legislative agenda? Or would we give much more sustained attention to the capability of local leadership, to staff motivation, to partnership working, to the interface between medical and non-medical needs, and formal and informal care?

Even the most eye-catching plan is only ever going to be as good as your local leaders’ ability to make it real, in partnership with others

This clearly doesn’t mean that there is nothing the centre can do: Unblock data flows, create a truly shared care record, don’t demand unrealistic returns on preventive investment, reduce the risk for those who redesign services by resourcing change properly, invest in the skills of health professionals to ask patients what matters to them and to act on the answers.  

Even the most eye-catching plan is only ever going to be as good as your local leaders’ ability to make it real, in partnership with others. Even genetic and data profiling won’t do away with the need for a better conversation between doctors and patients. Focus on where the action needs to be.