Changing the NHS – Preventing Ill Health – 3

(In my introductory piece to this series of posts “The Mechanics and Morality of Change in the NHS” I identified six themes that I believe any innovator needs to consider before, during and after the process of introducing change to the NHS. (New readers may want to read that first).

Thinking about spread from the start

The NHS is full of innovations, but usually they are very small. Over the next decade, spreading them will be essential.

The previous two posts established the odd historical fact that nearly everyone agrees that the NHS should be doing much more on prevention, but that fact sits alongside another – that over the last decade this belief seems to have had no impact on the amount of prevention actually being carried out.

Keeping this in mind I think we can dismiss the idea that a well written policy paper, originating either inside or outside of the NHS, will have much impact on starting a pivot towards prevention or spreading it further. So if policy won’t help the spread of prevention, what will?

There are a variety of ways but the one that I want to concentrate on today is developing patient demand for a more preventative service.

Historically the NHS is an organisation with a very powerful core. And whilst for the last few decades it has been claiming that it is moving towards a more patient-centric focus, most of the power still flows out from the core, rather than in from the patient. This won’t change overnight.

BUT we are talking here about how the NHS plan will need to change the organisation over the next decade so it must, by 2035, be much more focussed on how to better give agency to patients in managing their own health and health care if it is to thrive.

That implies that over the coming decade, we must take every opportunity of change to increase patients’ inputs into health and health care. (I am sure in these posts, I have missed a few already)

But if we are to increase prevention how does increased patient say in health care actually help?

I take as my starting point the numerous extant patient organisations. Most diseases have their own organisations – some have several. I remember how each of them saw their task as making the argument for ‘their disease’ against others. “Our disease causes more death than that one.”. “There are more workdays lost to this disease than that one.” “This disease costs the NHS more than that.”

I might be getting old, but it seems to me that, in recent years, this ‘we are worse than them’ approach has declined in use (It might be because groups formed themselves into the Richmond Group – named after the hours they spent waiting to see people at the old DH in Richmond House).

Nowadays, when I browse the disease groups’ web pages, they are each shifting their emphasis. Many more of them are now looking beyond treatment to prevention. And if not primary prevention then secondary prevention.

Some of us who, like me, have had cancer and are now living with both its aftermath and the possibilities of its return, recognise that for the last couple of decades of our lives cancer becomes a long-term condition. That’s not to say that it’s not very acute as well, but keeping on top of life experiences that may help it return is a form of secondary prevention.

This is true for many diseases.

Strokes are awful. Second strokes are worse.

Getting diabetes is very bad, but losing a limb because of it is a disaster.

COPD can really slow you down but needing daily oxygen is worse.

Depression can be very debilitating but being depressed for a year is hell.

In every one of the main disease groups, secondary prevention can help to improve the lives that people lead.  For me that is the core aim of the practice of secondary prevention within the NHS. All of those clinical patient hours that could be spent increasing capacity of the patient to self-manage their health care. How many of them actually do?

And this work is the main business of the NHS. Consultations with people with long-term conditions make up about two thirds of what it does. Let’s say that’s 660,000 consultations s day. Let’s say that on average they are 15 minutes long. How many of those important 165,000 hours every day are spent on the crucial activity of increasing the power of patients to look after themselves? (For me the whole purpose of secondary prevention.) Do I, at the end of many of those consultations, have any more capacity to look after my condition than I did at the beginning?

This issue is central to the need to increase resources that the NHS has available to better manage long-term conditions. Let’s say that, over the next decade, we want to increase the capacity of everyone with a long-term condition to better self-manage it. Using these consultations would be a part of that process, adding considerably to the resources that the NHS has available for that purpose.

If this is what we would like NHS efforts on secondary prevention to achieve, my chosen vehicle to spread that practice would be the various patient organisations for the different disease pathways.

What are the two interventions they would recommend for their patients in improving their capacity to self-manage? How would they determine whether these had or had not happened? Could they work with NICE, and the CQC to ensure that the regulator establishes these activities as everyday events?  How to encourage them to ensure they take place?

We would do much better working with patient organisations as the active component of spread than having any expectation that NHSE can make this happen by performance management. (All together now! – What does performance management not do? – manage performance).       

Of course, for some of these diseases, activities needed as a part of secondary prevention – say blood pressure control and depression – would be similar. We might find that the importance of ‘getting out more’ means that social prescription would be beneficial for a number of different conditions.

Since patient groups now often work together I wouldn’t be surprised if there wasn’t already agreement about some of these being necessary actions to improve secondary prevention.

Empowering patients and their organisations to play a role in their spread would not only improve health care but would put in some of the hard yards that we need to make over the next decade if we are to increase patient power in the day-to-day work of the NHS.