Is the NHS missing a vital sign? – Luke O’Shea

Luke O’Shea, NHS England’s Head of Patient Participation, explains how ‘patient activation’ could help over 1.5 million people in England with a long term condition:

NHS settings around the country are missing a vital sign. It’s something called patient activation – a measure of a person’s skills, confidence and knowledge to manage their own health. It’s simple to find out, like measuring blood pressure, and is scored from one to four. And it turns out to be really rather important.

More activated people are healthier; they manage their conditions better; optimise their medication; they use health services less and are even able to work more. Internationally, due to the growing weight of evidence that lies behind it, patient activation is being hailed by some as the “blockbuster of the century”[i] .

Today Professor Judy Hibbard, who developed the measure of patient activation, is launching a major new report about it with the King’s Fund. I am personally very excited, as I can honestly say that Professor Hibbard has changed the way I think.

In England about 10 per cent or 1.5 million people with long-term conditions are in the lowest category of activation, lacking basic self-confidence, skills and sense of self-efficacy. This means they live without the sense of hope and resourcefulness that many of us take for granted.

In the NHS, we see them in our clinics every day, we give them loads of information, we tell them to stop smoking, we say it’s important to take their medication, but it simply doesn’t work. We offer exactly the same services to this important group as we do to everyone else. And, unsurprisingly, our services fail these people, with major human and financial costs.

The NHS is just not set up to work for this huge group of people.

But it’s not just doctors, nurses and clinicians who have been missing this vital sign. National policy makers (including me) have missed it too. If you listen to leading commentators working in the NHS, they say the future of the NHS depends on us addressing the grand challenges of the rise of the prevalence of long-term conditions and also the financial challenge. Given that long-term conditions are not curable, and can only be properly managed by patients self-managing and changing behaviours, we need to understand activation to address this challenge.

Patient activation supports successful behaviour change, by building psychology into medicine in an elegant and practical way.

Activation has major implications financially too. 70 per cent of the costs of the NHS are spent on people with long- term conditions. Studies show that major savings can be realised as activation increases and people self-manage more effectively. This approach can help us shift from a deficit model, where we only measure patients’ medical problems, to an asset based model where we measure people’s ability to contribute, to do more for themselves, and to create a sustainable NHS into the bargain.

So the question is, can we afford to continue to ignore this vital sign? Perhaps the financial crash can provide a parallel here. The crash and the risk taking behaviour of bankers forced economists to accept that they must build psychology into their economic models.   A new field of study emerged to explain this, behavioural economics, and Nobel prizes were given to the world renowned psychologists who developed it[ii]. What might it take to build psychology and activation into our medical model?

Today the King’s Fund launch their important report on Patient Activation. We hope that next week we will have some good news on what we are going to do about this, working in partnership with the Health Foundation, the King’s Fund, local commissioners and the Renal Registry. And it’s not too late to get involved. If you are a commissioner, and you want to get involved please tweet me at@lukeoshea1.

We can’t afford not to do this.

[i] Leonard Kish described it in Forbes as the Blockbuster of the Century. Health Affairs and other journals picked this up.

[ii] Daniel Kahneman received the Nobel Prize for the development of behavioural economics and Prospect Theory. Many bankers and traders had the illusion that they could make complex economic predictions and out-perform the market. They were willing to bet massive sums of money on this and, according to Kahneman, that risk taking was a key cause of the crash.

Image of Luke O'Shea is Head of Patient Participation at NHS England

Luke O’Shea is Head of Patient Participation at NHS England.

He has previously worked in national policy and strategy roles at the Department of Health and as a commissioner in a local authority and the NHS.

Prior to that he worked in a range of government departments including leading work on early year services at the Prime Minister’s strategy unit, as a private secretary to a children’s minister and leading cross government working on ageing.

He describes as his proudest achievements his “modest role at the inception of Family Nurse Partnership in the UK and of my work on ageing”.

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  1. BusyB says:

    Hi Luke, has the NHS bought the licence to use the PAMS outcome measure?

    I wish to use it in designing new services in collaboation with people living with Multiple Sclerosis, I would like to avoid paying minimum of $700 to use the tool if possible, it would be great if I could register my work via the NHS and access the tool centrally- any advice?
    Lynne, I was really interested in your comments, it would be great to hear more of your insights Best wishes B

    • Anonymous says:

      Hi there B – Thanks for the message. Very interesting. We have bought a number of licences for commissioners to use. If you are a commissioner or working with commissioners then we may be able to help. If you use Twitter you can follow me @lukeoshea1 and I will DM you to discuss more. Best wishes. Luke

  2. Sian Finn says:

    Are CCGs allocating funding for the Patients in Control Agenda in their local 5 year plans? Given the new emphasis by NHS England on the importance of Patient Activation I do hope funding at least matches that spent by PCTs and SHAs. Is there any evidence in the local plans of increased funding?

    • Luke O'Shea says:

      Thanks Sian. Interesting idea and I have the same hope. Unfortunately we don’t know how much is being spent on the ‘Patients in Control’ agenda in CCGs. It’s as much about changing mainstream services as well as additional interventions, though both have their place. It is hard to measure the change in mainstream services, but we hope that ‘Patient Activation’ will be one such tool for commissioners. Regional colleagues are also looking at the 5 year plans in relation to ‘Patients in Control’ and working with CCGs to shape these. Many thanks.

  3. Mark Duman says:

    Thanks for this blog – it chimes with the approach mentioned here:

    One request for clarification: what’s the evidence for the following statement please: “In England about 10 per cent or 1.5 million people with long-term conditions are in the lowest category of activation” ? Thanks, MD

    • Anonymous says:

      Thanks Mark. The reference is Ellins J, Coulter A. “How engaged are people in their health care?” The Health Foundation, 2005, which said that found that 10% of people with long term conditions in England are at the lowest level of activation. DH estimates of number of people with LTC 15m, hence about 1.5m at ‘activation level 1’. Hope that helps.

  4. Lynne Craven says:

    Being someone who has moved up the activation scale myself since my diagnosis 19 years ago, this article resonates with me. As an activated self-manager I have healthier behaviours today than I did at diagnosis. I can be healthy and have MS. Yes I have knowledge,skills and confidence and I also have resilience because I know that whatever this condition brings I can deal with it. That’s where the psychology comes in…I am no longer frightened!

    • Luke O'Shea says:

      Thank you Lynne. Really interesting points and you can’t beat personal experience to make the ‘activation’ debate real. Inspiring stuff.