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

Why is this so hard?

Step by step over the next 10 years the NHS must be redesigned to be patient centred – to offer a personalised service. It is already happening in some places – by 2010 it will be commonplace.

NHS Plan page 17, para 1.3 (2000)

It’s very likely that in November the new 10 year NHS contract with the public will say something very similar. It may well suggest that by 2028 personalisation will become commonplace.

I know we meant it in 2000. I am pretty sure that the NHS will really mean it in 2018. But it keeps on not happening.

Today I want to try and explore why it is that the public keep on finding it difficult to gain empowerment to work on their own health. Tomorrow I’ll explore the other part of that relationship with the NHS and its clinicians, and for the following two days will suggest some methods and tactics that we need to use to help increase patient empowerment.

Because one of the interesting things is that the theoretical argument to involve patients has been won*. But that argument has very limited traction. I am not saying it has no traction with practice but, as was promised in 2000 – the NHS has not succeeded, within its own practice of one million consultations every 36 hours, in making it commonplace.

There are two sides to this relationship – the public and the NHS. For engagement to become commonplace both need to change.

Let’s start with the public.

Many of our citizens are not very engaged with most of the institutions that impact on their lives. Going through a lot of the public and private service experience that people have, there’s not much power and engagement.

For some years now trains between the south coast and London have been a mess. Many of those commuting on these routes are highly skilled, many with managerial jobs. For years they have got to work late in the morning and missed putting their kids to bed at night.

These quite powerful people don’t know what to do about it. Their daily travel experience has not added to their feelings of empowerment.

Many millions of people in work can’t earn enough to make ends meet and revert to payday loans to meet normal expenditures such as a car or boiler breakdown. They enter into financial contracts that to me look really frightening because as far as they are concerned they have no choice.

When I was in the sixth form at school and helped to organise parents’ evenings, I remember my Mum and Dad, whom I saw as powerful, sitting in the room looking rather frightened that they might make a mistake with my teachers and in some way get me into trouble. An experience shared by many parents unengaged by their children’s schools.

So even when the NHS does get its act together and tries to involve patients in their own health care, for millions of people they are battling against a set of life experiences that have given them no expectation of involvement.

Expecting a GP, during a seven minute consultation, to overcome a lifetime’s experience of being ‘done to’ rather than involved is a bit tough. Indeed a GP I know whose practice has ensured that every single member of the practice, receptionists and clinicians, has received motivational training reports that only 10% of patients increase their capacity to play a bigger role in their own health care.

I underline this point not to encourage us to give up but to recognise that, for many members of the public, this is an experience that governs many aspects of their lives – not just healthcare.

I know it’s different for different classes, different ethnicities, genders, age groups and educational cohorts, but the feeling of not owning the main influences on one’s life is very extensive. (When millions voted for Brexit because they wanted to ‘take back control’ – this was only partly directed at Brussels. Control was to be taken back from many locations).

If ill health is included in this set of everyday un-empowered experiences, for many people getting ill seems to be just bad luck and completely beyond their control given that it is the doctor who decides what happens next and all that is required of them is to follow orders.

An additional issue when you are ill is that very often the illness itself adds to the loss of some control. An overweight patient who gets arthritis will be advised to take a bit more exercise, but the pain in their joints will make something they haven’t done before even harder. Asking someone who is ill and has never had much say in running many aspects of their life to suddenly, when they are ill, take more control is hard.

If I have any professional background at all, it was as a youth and community worker so this issue of the practice of empowerment is one that I have been grappling with for 50 years – a summer camp in New Cross in 1968 was not a very easy, or successful, place to start. I know that in many locations and with many different groups of people, increasing their capacity to take power is hard.

But the one unifying thread running through any limited success I have had has been in finding an individual’s motivation for making that difficult step to take more control of their life. We are used to seeing motivation in a very few famous people, athletes who dedicate their whole lives to their sport, people in the public eye who work hard to get on, and others in our circle of friends and acquaintances who have spent most of their lives getting more and more wealth, qualifications, and control at work.

But motivation drives everyone. We just need to spend a little time listening to what is going on in people’s lives and what they would like to be different. I’ve mentioned before that organisations that work with the homeless have been told again and again, that what homeless people want is “Somewhere to live, something to do and someone to love”.   People who look as if there is no hope in their lives – do have somethings that they hope for, but it’s important to find the detail of it. They might change the self-destructive parts of their behaviour if you can find the relationship between the changed behaviour and that motivation.

If we want to encourage people to take a much bigger role in their own health care, then we need to find the motivation that will make them change and take a bit of that control.

Back in the 1970s I was involved in developing adult literacy curricula with trades unions that wanted to help members and their families to read and write better. The motivation here for learning was complex, because many of the people who could not read and write denied the fact. People can become very skilled at hiding their inability to read or write – or who have only very limited capacity.

The first thing to do was to normalise their experience by introducing one of their workmates or shop stewards that hadn’t been able to read for years, but had succeeded in learning, into the everyday conversation. If people can’t admit to something being missing in their lives, it’s difficult to persuade them to start filling the gap.

Next, having recognised that learning would be hard work, but that they would do this with their fellow workmates, they needed a set of tools or a curriculum to which adults could relate. Topics that interested them were understandably tackled with more enthusiasm than those that didn’t.

It’s an awful but true fact that at this time some adult learners were expected to learn reading using children’s books, which of course use examples drawn from children’s lives.

One topic that we found people would work for was health. If we taught sentence construction, vocabulary, etc. using health as the topic people tried harder to understand. People wanted to know about health so much that they would tackle the hard task of being adults learning to read and write.

Reading and writing gives people a bit more power in their lives. Learning about health gives them even more.

We should not expect that people will find any offer of empowerment an easy task to undertake. But to encourage someone to take more control over their own health will need very specific motivation.

*I find myself writing this every week. The theoretical argument about integration has been won – but the practice is still fragmented; the theoretical argument in favour of attacking waste is won, but the wasteful practices continue….. The lesson is that winning theoretical arguments means little here.