Increasing Public Involvement in NHS Long-term Planning – 1

The NHS plan story so far.

We have established that,

      • 2024 will almost certainly see the development of a long-term plan for NHS and social care.
      • If that plan is to have any capability to implement the difficult changes that will be needed, it must involve a lot of different people in its development. It cannot just be handed down from on high.
      • If the NHS is to thrive in the next decade it will have to change its relationship with the public and their health.
      • If it tries to do that in a plan without involving the public, it will fail.

This week’s posts will discuss the different ways in which the formation of a plan might involve the public.

Our health service is incredibly lucky to have so many national and local patient groups organised around disease patterns. Many of these involve some of the most advanced clinical practitioners and researchers. They also work closely with the development of new treatments. They are not only advocates for their patients but are often actively involved in helping with treatments and rehabilitation.

Both the NHS and the public with which it works would be much poorer without these powerful groups. Some significant areas of health care – simply would not work.

And it’s not just the very large national disease groups. There are thousands of hyper-local groups who play a significant support role in working with patients and their rehabilitation.

As we shall see, these are not the only members of the public that need to be involved in developing an NHS plan. But they are a great place to start.

Recent years have seen some important policy and practice developments within many of these groups. Historically I can remember in the early noughties that some campaigns sought to make their case by in effect asserting that “my disease is more important than yours”. This was understandable, because they thought it important to campaign in public to try and gain more NHS resources for their disease – and to some extent this was a zero-sum game.

But some odd problems related to it. If, for instance, a report showed that casess of your disease would increase by 30% over the next 15 years, you would immediately issue a press release saying something like “given this prediction we need more resources and had better start training the extra specialist clinicians now”. No-one really meant this, but it looked a lot like emphasising that “my disaster is worse than yours”.

It’s therefore understandable that if you were to talk to charities about a 10-year NHS plan they would all most likely compete for more resources for their disease.

But looking at their work over the last few years, a consistent pattern emerges that could lead to a very different conversation. One much more in line with Matthew Taylor’s vision of a new social compact between the NHS and the public around health and not just health care. (as I mentioned previously)

Recent years have seen most disease charities argue that society should place much more emphasis on primary and secondary prevention. They want to help stop people getting their disease rather than simply argue for more resource for those that have it.

If it is to thrive the NHS needs a public that has many more healthy life years. On this point, disease groups all agree. They would like the onset of their diseases, if they come at all, to come much later in people’s lives

I think this indicates that they would welcome a wider discussion – not just with the NHS but wider Government and society about a sustained prevention strategy. To be at all effective such a prevention strategy would require the development of a different relationship with the public.

Since all patient’s groups want people not to get their disease (if at all) until later in life a conversation with them about how to delay its onset, would be a good starting point.

Many strategies for improving the health of the public involve people engaging in more activity. This may involve exercise – such as walking groups or recreational groups – such as Men in Sheds – but it will certainly reflect a belief with which most clinicians agree, “Many people need to get out a bit more”.

One of the most powerful examples of the benefits of exercise has been the possibility of it reversing diabetes. I am struck by how many people I know that have successfully reversed their diabetes diagnosis by following a regime of exercise and a very strict diet. Some have achieved this by working with others. Sometimes as members of informal walking groups.

Given that people who have diabetes can benefit from taking more exercise, it seems not a bad idea for there to be a single group. For people with diabetes talking to, and walking with, others who are trying to reverse their diagnosis – or not get it in the first place – having such a joint group provides pretty good motivation.

But this is where an important aspect of prevention comes in. If you looked at most disease patterns, one of the most common means of preventing many of them would involve getting a bit fitter. This would apply to coronary heart disease, diabetes, depression, COPD – a very wide range of diseases.

So, we don’t really need a series of different walking trails for different disease groups! Nearly all the disease charities would be united in arguing for nearly all the same prevention activities. Help someone stop smoking and it of course lessens their chance of having cancer, but it would also improve COPD prognoses and all aspects of coronary health. (And for those with depression the great achievement of giving up smoking could help enormously.)

It’s not just that patient groups want to help the NHS by preventing people from getting the disease about which they are concerned. It’s also in their and the NHS’ interest to do this together. Whilst the diseases are all very different much of the prevention that will bring those healthier life years for so many people – and would in turn take pressure of the NHS – are very similar.

I think this offers two important opportunities.

To involve all the major disease charities in working with Government, the public, and the NHS to improve prevention and increase healthy life years.

To recognise that it’s in everybody’s interest to do this together.

Seem to me to be a good place to start reworking the compact between the NHS and the public.