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