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

Why is it so hard for the NHS and medicine to make a better offer of empowerment?

It is very likely that the new contract between the NHS and the public that will be published in November will, to succeed, depend upon developing more empowered patients. The NHS Plan 2000, the Wanless report 2003, and the five year forward view of 2014, all made the very strong case that without patients – to use Wanless’ term – being ‘fully engaged’ in their own healthcare the NHS would need considerably more resource. Over the next ten years, if the NHS doesn’t create much more engagement, it might fail.

So patient involvement in their health care is not “a nice to have” added extra, it is a big deal.

Yesterday I tried to explain why, for many people, taking more control of their healthcare, is hard because they have so little power over anything. I emphasised this not to encourage us to give up, but to illustrate why, despite nearly 20 years of this being policy, it has proved so difficult to empower patients. It’s not impossible but empowering people in their healthcare needs to be seen against the backdrop of so many people not being empowered in so many areas of their lives.

Today I want to discuss why, despite being such a good idea, it’s so difficult for the NHS and clinical staff to give up some of their power over healthcare to better include patients. Again by arguing that basic conditions make this difficult I am not  suggesting that it is impossible but trying to make sure we recognise why, over the years, we have not made more progress in putting patients at the centre of NHS health care..

Famously this year the NHS has its 70th birthday. Created in the aftermath of the Second World War and specifically based upon the experience of how that war had been fought and won a few short years before it is not surprising that this had a big impact on the way in which the NHS was set up.

The war had been won by the British state taking a lot of power over people’s lives and using that power in a concentrated way to wage war. From the distant perspective of 70+ years it’s easy to forget that amongst other things this meant the state taking over the distribution of food from the market.

At the time, the state was not creating a lot of opportunities for citizens to be involved. There was no public engagement about how much meat was on the ration card or whether we would invade Italy or France.

And crucially this form of state organisation worked. Many people were healthier because rationing took away the price-led vagaries of the market. And yes, the war was won by a strong centralised and unified state.

One of the direct consequences of this outcome was that the organisations set up by the 1945 Labour Government all contained strong unified centralised state organisation. The form of nationalisation favoured by that government centralised power into a number of national boards. There were no localised Workers’ Councils involved in running industries, it was done from the top.

So it’s not surprising that Bevan went for a centralised Whitehall-led organisational form for the NHS. Later, in 1954, he thought he might have involved local government more, but in 1948 it was a centralised state model for the NHS that prevailed.

And over the last 70 years this model has continued to win the hearts and minds of the English public. People thrill to the N in the NHS and want a national system. Over the years there have been attempts to challenge this model; the 2003 Foundation Trust models, the 2012 creation of localised CCGs – but if we look at where these have got us to in 2018 – we see a London based NHSI telling Foundation Trusts what to do and a similarly centralised NHSE doing the same for CCGs.

For a variety of reasons some of which are, as I suggest, directly concerned with what the public as a whole want, the model that is recreated again and again for the NHS is as a centralised state model from the post-war period.

And as in other areas of policy, this model does not encourage customer participation.

The council houses built over the post-war period did not have a policy or a practice of involving tenants in their management.

None of the industrialised industries had customer involvement in their structure.

Beveridge’s social security system was run by centralised organisations with no external participation.

And the centralised NHS had no provision for patient or citizen involvement.

Such structures precluded participation and since then – let’s be honest – the NHS has found it very hard to reverse that.

I have worked for as long in local government as I have with the NHS and whilst the former is hardly a paragon of public involvement, the average senior local government officer has a much better appreciation of customer and citizen involvement than the NHS.

These 70 year old structures have ‘baked in’ a culture that doesn’t make involving patients easy.

Alongside this is the structure and culture of the main activity of the NHS – medicine.

Over the last 2000 years medical knowledge has grown and grown – and for the last 400 years has grown mainly within the post enlightenment model of science.

This knowledge is deep and complex. As it develops it becomes more and more difficult for individuals to understand.

Over the last few hundred years we have become used to one group of people – clinicians – having that knowledge and developing it, and the rest of us – the public – depending on them to implement medicine.

This is so normal that we don’t even notice it any more. Some people – those who have the knowledge do medicine; the rest of us have it done to us. It takes 12 years for some of the active people in this process to learn their trade. I suspect the rest of us don’t spend 12 weeks learning medicine over an entire lifetime.

This is a colossal imbalance – and every decade as medical science progresses – it gets worse.

Let’s put these two together. We have 70 years of a top-down NHS structure working with several hundred years of medicine, working with a top-down knowledge base. We then say to the structure and to the practitioners of that knowledge base, “involve patients more!”.

And we wonder why it doesn’t happen very much.