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

Uncovering internal patient motivation to become more fully involved.

I suggested on Monday that there are strong social and cultural reasons why patients do not find it easy to become more fully involved with their healthcare. The NHS is part of a set of welfare organisations that in the post war world, promised to do things for us. The continuation of this promise has meant that the NHS and its staff have been expected to take control of our healthcare and save us from pain and distress. But given the scale of demand for long term conditions, the NHS taking total responsibility for patients’ healthcare and not fully engaging with patients is no longer a viable way of working.

But just because in 2018 the NHS needs to involve patients, but that doesn’t mean that patients want to be involved.

Part of my argument on Monday was that, in our society, there are very few social and economic institutions that set out to empower people so people don’t have a wealth of experience of being involved. Given patient involvement in our own healthcare is now so vital to a sustainable health service, we need to recognise that the NHS staff’s role in this process is an educative one – rather than simply assume people know what we are talking about.

It will not work if we assume that people will learn to better manage their own health because we think they should learn about it. We need to find out why people will want to learn to do this, rather than assume they will.

The point I have been making throughout the blog is that if people are going to spend time and effort learning something new (for example how to self-manage your arthritis) you need to be motivated to do it. Our problem is that given staff are involved in NHS healthcare from the inside every day, we find the subject intrinsically interesting and can, for example, see the point of working out what on earth an ICS is. But for most people this is all rather weird and, since ill health involves pain and distress, scary. The way in which we talk with people who do not work inside the NHS about the way in which it operates, is arcane and difficult.

An unexplained acronym is a significant disincentive to continuing to learn as it makes you feel it’s simply all too hard. Two unexplained acronyms and you simply stop learning what is being expected of you. These are strong disincentives to learn how to better manage your own health and we need to remove them as quickly as possible.

But even if we successfully remove disincentives, we need to get much better at finding incentives. Only then will patients carry out the hard work of learning how they can be better involved in their own healthcare.

All long term conditions and most other NHS interventions need some form of self-management when the clinician is not there. (For example continuing to take all of your medicine is an activity from which, usually, the NHS is physically absent – you do it on your own or with family and carers). The real-life patient experience of much of their care is self-care.

The motivation for patients and their carers to invest in learning how to improve their capacity to self-care is to better carry out tasks with which they live all the time.

For that to work, the NHS needs to be honest about what is going on from the point of diagnosis. “I am very sorry to tell you Paul that you have got arthritis. At your age this happens to a number of people and its very likely you will have this for the rest of your life. I and my team will help you with this as much as possible, but for most of the time you’re coping with your arthritis you and your family will be your main carer(s). And it’s this main activity – looking after yourself – that we need to help you with. So every time you meet with my primary care team we will want to know what has happened, and how you have felt about that self-care since we last met”.   

This shifts the purpose of the consultation to a discussion about how the self-care process is working and what can be done to improve the capacity and performance  of the patient and their carers.

The twin questions are “How have you been looking after yourself?” and “How could we help you to do that better”.

Immediately, and very fairly, I can hear primary care physicians reading this muttering that “we just don’t have the time to do this”. Teaching and learning in this way takes time. If the patient comes in with a 6 month diary of self-care up and downs that in itself takes a good 10 minutes out of the 7 available for the consultation, before there is any attempt to talk about the next 6 months. It’s true, but it’s why the primary care team needs strengthening by considerably extending it.

The main extension  must be to include many other patients in membership – not just as consumers of healthcare but as producers of their own and others healthcare. Having an hour with a group of other patients with time to discuss experiences of self-care provides an easier resource to learn from (and teach to). If primary care (or for that matter secondary care) clinicians suggest that they have assembled a group of patients and carers to talk with you about how you (and they) self-care – it signposts a great resource for both patient and the NHS.

This allows for much more time than the patient will ever have with the GP consultation to be spent with people who are struggling with much the same experiences and worry about their illness and self-care.

This is the renewable energy source of the NHS. If the problem is millions of people with long-term conditions, the answer is millions more people with long-term conditions.

Tomorrow we will talk about mobilising them.

* Given that on Monday a poll of 108 MPs by YouGov found that a third of them did not understand jargon used by the NHS around new models of care. Yet I would expect that many of the explanations given to patients about new pathways of care contain similar difficult and unexplained phrases.