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What a patient leader can do to help integration | David Gilbert

David Gilbert

Truly integrated care won’t happen without patients at the highest level, writes David Gilbert. 

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 as patient director at Sussex MSK Partnership (Central) is to bring together – another meaning of the word ‘integrate’ – the usually disparate streams of work going on 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’.

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 said 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 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 Sussex MSK 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 GPs which 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, Sussex MSK Partnership’s vision, the documents I had read prior to interview and the reasons I had joined the organisation. 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 a common language that could be understood by all sorts of audiences. I recalled an inspection report by the former Commission for Health Improvement, 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. 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.

Sussex MSK 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 the 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.

David Gilbert is the patient director at Sussex MSK Partnership (Central) and director of InHealth Associates. He will be speaking at the NHS Partnerships Summit on 2 December. Follow him on Twitter @DavidGilbert43

This post first appeared on the InHealth Associates website.

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