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David Gilbert: Patient as expert

'This blog was first published in the British Medical Journal'

david_gilbertDuring my psychiatric years, I could only dream of being an equal to health professionals. These days therefore, to be valued as an “expert” is seductive. But we have to move beyond flattery as it makes for an ego-fuelled heart and soggy mind.

I was one of five on the patient panel at the recentBMJ/IHI International Forum on Quality and Safety. Alongside Brenda Murray, Jonathan Hope, Paul Wicks, and Rosamund Snow, we were there to provide the “patient perspective”—an often meaningless phrase upon which others hang a thousand meanings.

As with many involvement exercises, the intention behind the Patient Panel seemed pure—to demonstrate a commitment to patients being partners. But, were we there to tell our own experiences? Or to “represent” others? After a few planning calls we decided our role was to (a) check out the extent to which presenters and conference sessions modelled “patient partnership” (b) help organisers of subsequent events learn and improve. Thus we tried to model the conference theme of improvement.

At the event, it was flattering, but uncomfortable, for us to be lauded loudly. I felt in a glass cage, to be shown off. Tick-box. A giant screen boasted that the conference was being delivered “in partnership with patients.” Grandiose. Untrue. We had had no planning input. Session speakers defaulted into claiming that we were there to “be the patient voice.” No! But the message about our role had not been communicated properly—next time perhaps?

I doffed my cynic’s hat: “Another example of the empty ‘put the patient first/at the heart/centre’ rhetoric,” I harrumphed, as I stomped into my first workshop blame-seeking. Coffee helped, as did pinching a few freebies from the myriad commercial stalls. I told myself to grow up and be charitable. Just as in healthcare, people were doing their best. The problem was that past feelings and habitual responses had been triggered—my first learning of the event. (See also “emotional labour” blog).

So, we got on with it. We split up and dived off to different sessions, brought back nuggets of learning, and plotted as to how we could influence things next time. It was fun and exhausting.

Rosamund modelled good practice to lead a successful session on co-production. Jonathan repeatedly urged people to be more ambitious—most memorably challenging the Strategic Advisory Board in our private session with them, to endorse the training of thousands of patients to be improvement leaders. We shall see.

Paul inspired us to think of the wider collective—the growing networks of patients who keep researchers and improvement focused on what matters. Brenda kept us grounded with the judicious use of story-telling—her experiences as a carer, coupled with a warmth and humanity, kept us all connected with what really matters.

I pootled around, picking up clues about the current state of patient partnerships in quality and safety activities. “Patchy” is my verdict. Certainly, much more needs to be done next time—more patient participants, patients leading sessions, a better grasp amongst professionals, and presenters of what patients can bring to the improvement table. One of the highlights for me was a formal debate on the motion “Patients Know Best.” My team took on Paul’s team, and I found myself, oddly, opposing the motion (we won, and Paul will never let me forget it, or perhaps vice-versa?!).

At our hastily planned final panel session, we reflected on our experiences. We had grown aware that we were pushing at a (partly) open BMJ/IHI door—that next year’s conference could be quite different if we played our cards right. So, we resisted tub-thumping and tried to draw upon audience’s expertise as to what more might be done.

During that discussion, it became clear to me (again!) that the patient leader should not ‘be’ the patient voice but to be a channel—to help create the space within which patients and professionals can connect and work better together. Patient “representatives” have to get over themselves in order to bring in, and bring on, others (see also blog on “The Rep Trap.”)

Being touted as “expert” is what I’ve always wanted. Or so I thought. Now I see it is another trap—just like patients being served up as “heroes” (see “patient as hero” blog.) Being a patient “expert” sets you up as “other” and creates the very separation I want to break down.

As people who have trodden thin emotional ice, patients should be wise to the myth of “expert” knows best. Our gift of vulnerability can inspire collective human endeavour. But patients don’t know best. They know different. Together we can work for the best.

David Gilbert is a former mental health service user, patient director, Sussex MSK Partnership (from June) and director of InHealth Associates, that supports effective patient and public engagement.

Competing interests: David Gilbert runs InHealth Associates, a consultancy organisation that supports patient and public engagement.

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Integration: what a Patient Director could do to help

Integration is a fashionable, yet slippery, word. Like much NHS jargon it can mean what you want it to. For me when I was ill, it was often illustrated more by its lack – my notes and I were never in the same room at the same time. And there was a paucity of information and explanations from beginning to end of my (so-called) care pathway.

One of the possible boons of my new role of Patient Director at Sussex MSK Partnership (Central) is to bring together – another meaning of the word integrate – the usually disparate streams of work going to enable patients to be more in control of their care.

I have written before about the silos around patient-centred care and how fragmented roles and responsibilities mirror the fragmented care my mother received (car parking is a clinical quality issue http://www.bmj.com/content/350/bmj.h1312).

In that article, I described how patient experience teams report upwards through hierarchical layers to the Nursing Director, while patient and public involvement (PPI) teams trace similar circuitous paths to the corporate or comms teams. Various nursing teams may have some ill-defined responsibility to ensure people ‘self-manage’ their conditions and yet others oversee efforts to ensure better patient outcomes. It’s often a bit of a mess!

Meanwhile, the move towards ‘shared-decision making’ and ‘choice’ and ‘care planning’ and ‘provision of information’ and, and, and… surely cannot happen if each of these initiatives is divorced from the other at clinical, team and organisational level. Who is holding the bits together? Who ensures that the golden thread – working with, and for patients and carers – is woven into all areas of practice.

The role of the Patient Director

It would be trite to say that the appointment of a Patient Director will solve everything. It won’t do unless the associated cultures and systems are right or unless the Patient Director can influence this.

However, I can see already that a Patient Director within a committed organisation can have the line of sight and necessary clout to bring things together, in a way that any Vanguard would appreciate.

I will be leading and coordinating work on supported self-management, patient information and choice, improving patient experience, patient and citizen engagement.

Already I have been part of significant discussions on how to bring all aspects of patient-centred care together. For example, we have had conversations with local voluntary sector organisations about supported self-management, and I will be developing a People Bank – a pool of patients, carers and citizens to be service improvement partners. I can plan both to align with each other and make decisions about the money! I could never do that as a (relatively junior) Patient and Public Involvement (PPI) Lead.

But I know it will be hard to take these grand strategic visions back ‘down’ to operational level. How can we ensure that clinicians will signpost people to self-management support? How can we make sure that professionals truly listen to patients? And, in the heat of operational pressures, how can we stick to our guns about patients being at the centre of what we do?

The Letter

The other day, I attended a meeting between our partnership and the commissioners. We were discussing how clinicians in our community service communicate with GPs about next steps for patients after coming away from a clinic. The team has drafted a new version of a letter that includes information about medical treatment, and also about self-management plans.

The conversation drifted towards the idea of producing one letter for the GPs, that includes the important information about medical treatments, with associated medical language. And, another ‘user-friendly’ version for patients that used lay terms for drugs and went more into self-management issues.

I felt myself going with the discussion. I completely understand that GPs are busy. I also get that changes to current practice are challenging – this was a very different style of letter than they were used to. And I almost bought into the ‘fact’ that they would want to know more about drugs (because they, after all, have to prescribe them). And that they may care a bit less about the sort of activities and exercises that patients should do.Almost.

Then I remembered my own experiences as a service user, our vision, the documents I had read prior to interview and the reasons why I had joined the Partnership. It was about true integration. Not some lofty academic phrase – here was a challenge to integration in practice and a letter that needed to be expressed in a common language.

I have worked for Which? Magazine and our approach was always to have one version of our reports, and to have a common language that could be understood by all sorts of audiences. I recalled an inspection report by the former Commission for Health Improvement (CHI) where we worked with people with learning disabilities to produce a ‘user-friendly’ inspection report for a care home. It was so good, I argued that we should adopt that sort of report to replace our more ‘professional’ report (pictograms and all). I lost that battle, but I realised we could win this one.

So, I asked the people in the meeting to come back to first principles: If this work is about integration, then we must strive to produce a single, integrated clinical letter. I will also do my best to ensure we properly test out the letter with patients and GPs – perhaps with them in the same room at the same time.

This all may seem like a small part of the overall work, but it is vital to get it right I think. Getting it right is deeply symbolic of our efforts to bring patients and clinicians together and to develop better relationships. The letter example is only one small act.

The Partnership needs to ensure this sort of focus happens at all levels. Integration will not happen without patients at the highest level. As the Berwick Report put it: From ward to board.

Because I am Patient Director, and was in the right place at the right time, with the right job description – to bring it all together – I was able to act. And, hopefully to get it right for both staff and patients.