No More Lazy Thinking - Let's get clear on the benefits of patients being partners for change

by David Gilbert

October 24, 2014

I got excited when I opened up the NHS Five Year Forward View written by Simon Stevens. It proclaimed a future founded on a "new relationship with patients and the community". Fantastic, I thought.

This must mean working with patients as partners for change - seeing us as equal partners in decision-making. It must mean that this new relationship was both the intended outcome of, and process by which to achieve, the vision.

Of course, I also expected to see that patients had co-produced the report itself! My first disappointment came when I read the vague description that the report was a result of a 'shared view of NHS's leadership' and 'reflected a consensus amongst patient groups, clinicians, local communities and frontline leaders'. That sounded like a fudge, or at best the result of some sort of 'listening' event that I certainly wasn't part of.

However, the deeper disappointment lay with the way the report was written and the assumptions between the lines. In particular, it is still all about 'us' (traditional professional leaders) working 'for' patients and communities rather than 'with'. It is still 'NHS leaders' driving the vision and models of delivery. There seems no evidence of patients influencing the mindset of the author(s).

When it came to content, while most people focused on funding, or the Daily Mail headline grabbing messages ('paying people not to be fat'), I was looking for evidence of co-design and co-delivery. The report does set out some worthy initiatives in particular areas (such as Health Champions and increased volunteering). But, overall these seem like islands of good practice surrounded by an ocean of wasted co-design opportunity - potential projectitis writ large.

My over-riding impression as I scanned the pages is that patients, carers and citizens are still far away from being treated like grown ups with the power and capacity to be true partners. Co-design is still a pipe dream. Patients at an individual level are exhorted to 'grow up' (aka take more responsibility for their own health) but are not treated as such when it comes to being partners in power.

Rather than being at the table, we must remain grateful for the crumbs of engagement - a few focus groups here, a questionnaire there, a rep somewhere else. Maybe a whizzy initiative slipped into page 13 of a worthy report.

But I shouldn't complain too much. If we want to be treated like grown ups, we have to act like it. One area where this could be done is to take responsibility for making the case - why do we deserve to be part of decision-making? What difference will us being there actually make? I believe that there is some lazy thinking in the engagement world and in the patient movement. We have dodged the question, I believe.

I have been guilty of lazy thinking. As a former mental health service user, I have been comfortable with advocating a rights-based approach to engagement. That stance has seeped into my wider work and, while eminently justifiable, doesn't wash with those in power these days. In difficult, resource-constrained times, I believe we have to be sharper, with a better sense of the benefits. This is about heart and head. Passion and nous.

I have said elsewhere that engagement has to be fit for purpose, that the engagement industry is choc-full of meaningless activities and processes that don't help with improvement or transformation. This will only shift if we provide a clearer picture of what patients bring to the party. I want to be able to go to a clinical team or a CCG Board and be able to say 'if you work with patients, it will help achieve XYZ, patients bring this and that to the party and it will be a win-win'.

There's another reason why we have not had these sorts of conversations. We in the marginalised patient movement have often seen our aim as getting engagement part of central dictat. And many national patient groups have been successful in this art. But, on the whole, this seems to me like a child urging grandparents (policy makers) to tell parents (health service leaders) to dole out more pocket money (engage more).

I wonder whether we have unwittingly colluded in making engagement a numbers game through statutory means? Has it helped to fuel the very tick-box culture we say we abhor? I don't believe that engagement - an activity that itself must be predicated on equal relationships - can be mandated from above. It just goes against the grain for me.

I think we need to do more to support change and prove ourselves worthy partners. We need to use grown up arguments (NB I am using 'argument' here in its sense of meaning 'to make clear'). And when we move into 'support mode' we need to be clear about why engagement is a good thing. We ask health professionals to be evidence-based, but often resort to rhetoric when it comes to engagement.

This is not to argue for more sterile academic research (god help us). Patients and citizens have to lead the conversation about the sorts of benefits that are important - that having patients in the mix generates solutions, broadens discussions, leads to better quality decisions, changes relationships and leads to better practice. And we need to show it to be true.

Meanwhile, when it comes to the future of health and healthcare, I don't think it is dependent on this or that 'model' of delivery, as outlined in the Stevens vision. 'Culture eats strategy for breakfast' as the saying goes, and any model will fail if patients and citizens are not part of co-designing them. It will be more money to prop up an old culture and system that believes more in delivering care 'for' patients rather than 'working with'. I for one am not prepared to advocate for a future NHS that does not shift the status quo.

However, for my vision to be more than a blog-filled rant or quiet fantasy, it's not just health professionals and policy makers that have to change. It's all of us. By going beyond lazy thinking, articulating and demonstrating the benefits of patients being partners for change, the patient movement can get moving again. Only then will Simon Stevens and others be convinced and write a different sort of report.

By David Gilbert October 2014

Follow me on Twitter @Future_Patient or @DavidGilbert43

All blog posts
what we do

5 comments on “No More Lazy Thinking - Let's get clear on the benefits of patients being partners for change”

  1. Thank you for your very eloquent blog. I like the grandparent analogy and pocket money. So true what you have said. What type of research would you like to see for the patient engagement evidence base? I am wanting my research to get at the heart of that relationship to describe and explain the experience and meaning of it at the commissioning interface. Is this the sort of thing you would want to see?

  2. A brave blog David. In my experience, we have to show the NHS how to do things differently. Imagining the kind of change we want to see is impossible for most people. There are many communities and NHS organisations applying co design as you enviasge it. Maybe we need to raise their profile so they are seen as the norm now?

  3. Everyone working to an evidence based approach is laudably rational. But the snag is that health professionals, read clinicians, often don't do this themselves even while espousing it for others. People have been begging for meaningful engagement metrics for ages and they aren't there - or have I overlooked them? Even finding evidence that people agree on that engagement has made a difference (what "difference" means may be the stumbling block) is difficult. I think Stevens - like Wanless and Darzi (twice) before him - has got lots of the words (lyrics) right, but the problem is that the tune played by patriarchal, patronising NHS culture is not very danceable. To extend the metaphor, if as you rightly argue, we were all singing from the same score as part of the same ensemble then getting the partnership type change we need would certainly be easier. One can but hope.

  4. You put this very well David. There is a really deep resistance on the part of politicians and public health people to take the risk of genuine power-sharing with patients. And since "patients" don't exist as such, but just as people with health needs, they can so easily be tokenized or brushed aside. I hope this is less true of my own branch of the health profession, general practice.

    The politicians are worried about cost while the public health people are convinced that they know best about how to improve "population health" and prioritisation. GPs have to deal 40-50x a day with the problems of individuals and how people actually use and need health services. But to put them in charge of commissioning when they are already cracking under the strain of their real job, and to effectively exclude patients from the service design process, is just crazy. It means that the bureaucrats just stay in the driving seat - or, worse still, move from one driving seat to another with no long term responsibility - and no learning process except that you stand a better chance of moving ahead if you do what your superiors like rather than taking any notice of real local need.

    So it will always be an uphill battle, but one that always needs to be fought. I've seen three decades of it in relation to our local hospital services. As you say there is some good in the Stevens document - breaking down barriers between primary and secondary care being one. But real sharing of service provision and design with users - that has yet to come. I just wish there was a political party with enough vision and courage to take this as their goal and bring real democracy to the NHS.

  5. Thank you David. I understand the angst of dealing with dinosaur cultures where the 'grandparents', and even moreso, the 'parents' are comfortable and unmotivated to change. And whilst I agree that 'sterile' academic material is unlikely to change attitudes and entice the 'oldies' into change: I would suggest in theory that sometimes good, relevant and solid academic literature may show the parents in particular that their practice is in fact non-evidenced based. Codes of health professional conduct regard that as malpractice.
    Add assertions of a group of experienced persons with lived experience of relevant medical conditions who have solutions to offer then one has a chance of unfreezing ossified paradigms.
    Momentum also demands a challenge to clinical guidelines (policies by another set of grandparents in the healthcare profession colleges in Australia, anyway) which act to straight-jacket clinicians into sometimes narrow and patient- toxic practices).
    I am evoking the idea that the child is transformed (in the 'oldies' eyes) into a mature adult (? the butterfly from the larva and pupa but in reality always was the butterfly) with power of experience and ability to show by example, how the previous paradigm was defunct.
    Of course battling clinicians and policy makers on what they regard as their own turf takes initiative, confidence, the backing of enlightened researchers and clinicians and real-life examples.
    The threat of healthcare malpractice is a stick which has to be used wisely, whilst the actual results of defying the old regime is the carrot - better patient health, more self-determination in patients (an essential element of patient-centred practice).
    Yes, Ma and Pa, Dad and Mum - this is the better future for us all - fly with us.

Leave a Reply

Your email address will not be published. Required fields are marked *

patient leadership newsletter

Sign up to our Patient Leadership Newsletter and get a free eBook

When you sign up to the quarterly Patient Leadership Newsletter you will receive a free download of The Rise of Patient Leadership, an eBook collection of David Gilbert's most popular articles.

Get a free eBook of David Gilbert's most popular articles

Subscription Form (#8)