I seldom write about the NHS and its future. Too hot, too polarised, and frankly, I don’t know enough about national funding models to be clear on my views.

But when Partha Kar, a consultant diabetologist I like and trust asked me to give NHS Survival some advice and support, I thought it would be good to pen some thoughts.

NHS Survival is a new campaign group that wants to ‘save the NHS’, through “patients, the public and professionals working together”. Indeed, it has been bold enough to proclaim that it is already working in partnership with patients.

A quick skim through its original website (it is a bit better now) triggered my disdain. No patients included. But more of this below…

Here are five reasons why I will not yet support the campaign.

1. Too strident

For many years, I have been trying to shift my work towards a sense of true partnerships – a struggle for a born and bred activist. I firmly believe that patients can be partners in finding solutions and should be equal partners. That means modelling partnerships and moving beyond an ‘us and them’ mentality.

The NHS Survival clarion call seems to me to be akin to many other calls to save the NHS – from evil government plans, from mafiosi-like corporate ventures – from ‘the other’. It frames the NHS as victim to perilous forces. The (dare I say it, ‘childish’) tone is set, the attitude strident. I do not want to join sides in a battle. I want dialogue.

2. No survival without change

As some may have read on twitter, my view is that I will not support the status quo. All campaigns to save the NHS thus far have been built around the notion that we should defend ‘what is’ – that is, to all extents and purposes the power base of the current elite.

The NHS has, for 70 years, been led, controlled and largely influenced by clinical, managerial and political leaders – patients have no power (see my previous blog on the lack of patient involvement in policy). Claims of ‘public accountability’ seem vacuous when each ‘side’ claims to speak ‘on behalf’ of patients.

I will not support a campaign that puts survival first and patients second. Change comes first. Indeed, my view is that only by patients having true influence at all levels (nationally, locally and individually) can the NHS be sustained. If and when the campaign shifts tack, I may take it more seriously.

3. Patients included?

Patients on social media have questioned the ‘patients, public and professionals together’ tagline. Rightly so. All founding members of the campaign are health professionals. It is they that have decided the vision and purpose.

Now, many of them are saying it is their ‘intention’ to involve patients. And I am sure they mean it. But, as with many efforts to involve patients, the question has to be asked: Is it too late? And, how dare they lay claim to patient support without having done the legwork first. This makes me cross.

Only by engaging with patients, carers and the public from the beginning, can true co-design take place. For me to be involved, I would want to go back to first base, and question the very purpose of the campaign. I am not prepared to tick the box (again). This is a real question – if patients were to be involved, can we move the goalposts? For me to be involved then, how would I want them moved?……..

4. It’s about the money

When Partha and I have talked in the past, it has often been about how patients and professionals can work together and have serious conversations about what the NHS can and cannot afford. That’s where my interest lies.

I would have wanted a campaign like this to spearhead an honest debate about what is, and what is not, affordable; how patients can be partners in decisions at national and local level about funding. I had thought that to be the purpose of the movement. If that is (or was to have been) the intention, this seems to have been lost in the blood-lust for a fight about survival.

5. What to do?

The campaign makes great play about the need for an ‘independent’ Royal Commission. That sounds intriguing, I must say. It is probably where the campaign is on its surest footing – a tangible process and product.

In my experience, such processes require the involvement of patients. I have run several patient or citizen-led inquiries into prioritisation using ‘deliberative methodologies’ such as citizens juries. They are very useful tools for tackling complex and controversial issues, such as decommissioning and rationing.

In order to run such a process, the question needs to be clear. For me, a deliberative process that looked at key specific tricky issues, such as ‘whether and how can the NHS run a seven day service’ or ‘what can be done about A&E demand’ lend themselves to focus on pinch-points in the NHS.

Inevitably, such a specific focus would also lead to wider discussions that reveal ideological assumptions about the very nature of the service we want in the future. They might also be useful at a local level and help busy staff.

More useful I suspect than a vague and politically loaded question built around the assumptions of the current NHS Survivalists.


In summary, I am not joining NHS Survival yet. I am not persuaded that it can truly involve people like me. I am not willing to call for NHS survival, unless the NHS (and the campaign) changes tack significantly. If it were to work with patients to reframe its purpose, tone and processes… maybe.

Until then, it is interesting more broadly to note that the NHS Survival campaign seems to be yearning for patient-side credibility. For once, patients may have some leverage over a visible national policy initiative. How could we use that?

For more blog posts from David, see futurepatientblog.com


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  1. John says:

    What on earth are you on about ?

  2. John Carlisle says:

    Henry Ford once commented that: “If I had asked people what they wanted, they would have said faster horses.”
    Surveys show that most patients, when they are patients, want to be kept in the loop, especially with the “why”, and treated by the nurses with real care.
    You are not a patient until you are – like Ford’s potential customers – so you can’t really know what you want WHEN you are a patient, apart from the above. Believe me, I know, I am a live kidney donor.
    So, what exactly is your point?

    1. Thanks. I don’t really understand your comments. Precisely because those of us who have had life changing illness, injury and disability know what it’s like, the responsiveness of the system can only be truly changed and improved if people who know that are part of making decisions. As equal partners.

      Try reading some of my blogs and you will get the gist of where I am coming from futurepatientblog.com

      And an article in the HSJ perhaps http://m.hsj.co.uk/5089425.article

  3. I do understand what you’re saying and I agree with most of it. My concern about the health service, after working at all clinical and non-clinical levels and as a patient, is about the gross inequalities that the NHS contains and which increasingly reflects UK society. That nurses and others are poorly paid and overworked often with inadequate equipment while senior managers, particularly chief execs, are hugely overpaid, has real consequences. Inequality on this scale manifests itself for the poorly paid in mental and physical health problems which in turn are reflected in poor quality care – unsafe and often without compassion. Until patients have an influence on this growing inequality their real contribution to the quality of care is very limited.

    1. Thanks Jenny. And I agree with most of your response. My experience and my work shows some evidence that when patients are involved in decision making (which is rare) that equalities in various ways become a natural focus; after all, people who have used mental health services (such as me) inevitably focus on fairness and justice, access to care, parity of esteem and are pretty sensitive about inequalities in the system.

  4. John Carlisle says:

    1. “Precisely because those of us who have had life changing illness, injury and disability know what it’s like, the responsiveness of the system can only be truly changed and improved if people who know that are part of making decisions.”
    Patients know what WHAT is like? The pain, the embarrassment, loss of sense of self, de-humanising acts? Yes, but they would never know what in the system needs fixing to avert these. The nursing staff certainly would, as would some doctors; but very few managers. Just like a person in Henry Ford’s time who was frustrated by the slowness and the discomfort of a horse could never dream of something like a combustion engined car as a solution.

    2. I did read your blogs. On the agenda from Future Patient Musing. . . .
    “Only when patients have this sort of influence, can a wider vision for healthcare be realised where patients will: (to take one point)
    Reshape clinical and non-clinical education by co-designing and delivering local and national training and learning.”
    This is blatant nonsense. To do this you need patients collectively to be andragogues, clinicians, designers of learning conditions, and have process expertise. It is bad enough having Michael Gove’ ham-fisted attempts at improving education, but a bunch of lay people?
    An analogy: I have an old car which I drive to its potential. I check the tyres regularly and use top grade petrol. I service it at the right times. But it does go wrong and when it does my garage fixes it. These are really skilled and enthusiastic BMW mechanics who love the car make. I would not dream of advising them on anything. I certainly would not devise a curriculum or suggest how the garage could be better run. They are both experts technically and in how to behave in the system they are in. Only they can improve that – once they are helped with systems analysis, etc.

    In the daily running of things the workplace is not a democracy. All sorts of criteria govern who can decide what how and when.So, by all means consult the patients on what the problems are – type and context; but then the organisation must take over.

    As to Jenny’s point, which is more important, this is a critical issue. An NHS hospital is the British class system at its worst. Being a manager has more cachet than being a top psychiatrist! Crazy. I was a miner in Africa. The mine manager earned a lot less than the top metallurgist because the latter could find the ore, design and run the treatment plant and monitor the mining process. The manager could just create the optimal conditions for this to happen.

    What you should be attacking is the system of compliance and regulation that ruins morale and deflects patient-centered work, especially when buttressed by incentives. Now there is a worthwhile target.

  5. I am sorry you find my views “blatant nonsense”.

    I am more encouraged however by the hundreds of healthcare professionals, managers and patients with whom I have worked for 25 years. And by those that are working in partnership who share my views – who see that patients can bring a different (not the only) perspective and can directly and indirectly help improve things.

    I could cite plenty of examples, but I doubt I will be able to persuade you though. I wish you all the best.

    Kind regards

  6. Martin Rathfelder says:

    People are not like cars. What they think and feel about what is happening to them makes a difference, and any sensible clinician understands that.

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