Better involvement of patients and the public in the delivery and implementation of their own healthcare?

What else can the NHS do to more fully involve patients in their healthcare?

To recap.

Over these few weeks I am posting on a number of themes which are important to how, in November, the NHS will deliver its new contract with the public. I felt there would be hundreds of pressure groups wanting to suggest what the new money should be spent on, but, if the NHS is to achieve anything, we will need to know how to deliver something new.

This week I am discussing the importance of adding much more of the very considerable resource of patient involvement in their own self-care. On Tuesday I outlined why this was such a difficult change for both the NHS as a structure and medicine as a knowledge base and a practice. Yesterday I suggested that both the primary and secondary care teams need to be considerably expanded to provide resources for this endeavour – and that the main and most useful resource that needs to be provided in order to expand that team is the experience of recent patients with the same condition.

One of the prolonged mistakes that we make about ‘patient involvement’ is that we think, because most people love the NHS, that they want to be involved in playing a role in running it. They don’t. I make a living out of explaining the arcane nature of the NHS to itself. It’s weird and many attempts to move it forward make that structure weirder.

Genuinely there are hundreds – perhaps thousands – of people in the NHS who try to involve the public in the governance structures of the STP. Of course this is a good and worthy task, but I sort of have a rule that it’s a waste of time trying to involve people in something if they don’t really understand what it is. People are kind. They will nod along with the conversation, but turning up on a Tuesday afternoon to help run something they don’t understand – it isn’t a good sell.

A lot of my life has been spent working to involve citizens more in the structures of English public service and Government. It’s very, very hard. I remember back in Coventry in the Community Development Project between 1972-6 talking to people about getting involved in governance for public services. On a good day this was… challenging.

However, if you return to these same people and say – “What do you think we should be doing differently with the playground that your children use”, or “How should we better organise the visits of repair staff in your local council estate?” and they had loads of concrete and important ideas.

For a variety of reasons as I outlined on Monday people are not used to citizen empowerment. English society is not good at it.  It’s a bit abstract.  But they are interested, as consumers of specific goods and services, in how those services could be improved. What’s it like at the moment? How could we improve it? These are questions that most people engage with enthusiastically.

This is especially the case for patients with long-term conditions. The secret of how to better involve people in their own healthcare if they have a long-term condition is in the title. You have it for a long time; you’ve experienced the health care for that condition for a long time; you are invested in this process and it’s likely to go on into the future. Therefore it’s worth playing a role in its improvement.

It would be better if your care in the next decade was better than your care in the last decade and so it might just be worth suggesting what you think. Patients as consumers of specific healthcare are in a different position from patients as citizens. And we need to build on this.

On Monday in an interview in the Times, Sir Robert Francis (the new chair of Health Watch) outlined the importance of volunteering to the future of the NHS. He’s right, and we need to make it straightforward for people to be able to volunteer.

My argument is a subset of that. We need people not just to volunteer in general, we need them to take some time to talk to people who have been more recently diagnosed with the particular long-term condition they have, We need patients with experiences to spend some time talking through their own experience and answering the questions about that experience with groups of patients who have been recently diagnosed.

The clinician will only have a few minutes every few months to have a conversation. Patients with experience have the time to have conversations over the same period that can last a few hours.

The question for some in the NHS would be how to control what they say to each other. And the answer is that you can’t. It’s the same problem that the NHS has in not controlling the internet or not controlling somebody’s gran who tells you to rub goose fat on your chest. Medicine cannot control the other knowledges that exist in the world.

But what we can do is better debate with them and to engage with many more voices that exist at the moment.  A patient who has had a condition for two years and has had NHS health care for that period will have valuable experience of how the NHS will be trying to care for the new patient they are talking to. The experienced patient will not have 12 years of training that a doctor would have, but they will have experience. Let’s make sure we use it.

Apart from a few shining examples, the NHS does not have a good track record of organising volunteers, especially in primary care. But in every location in the country, there are organisations that do have a strong track record of doing just that. Rather than try and learn these new skills itself, the NHS need to work with existing voluntary sector organisations.

As I said at the end of yesterday’s post. In the next decade there will be millions more people with long-term conditions – they will be a drain on resource, but they can also provide resource for other patients.