Getting Serious: How a Patient Director can help focus the NHS on what matters to patients

I’ve been on the road learning about how we, at the Sussex Musculoskeletal (MSK) Partnership, provide services to people with joint, muscle and bone conditions.

I shadowed a wonderful rheumatology nurse consultant, Di Finney, at one of our community clinics. Every patient was leading their lives the best they could, while suffering and in severe pain. Please, if I hear one more person exhort patients to ‘take responsibility’, I will revert to ranting Twittering behaviour!

Patients are serious about taking responsibility. They - and many carers - do real 7-day a week work.

One incredible woman was dealing with newly diagnosed fibromyalgia on top of chronic pain. She was very overweight (despite courageous attempts to lose it), suffered from depression and anxiety and had to take a dozen medications – all this whilst looking after young children. She had had to stop working in a job she loved: “I don’t want to be cared for. I want to care for others” she said.

Di brought her and her records together in one system. For the first time, we got a clear picture of what was going on, after her having been sent to one consultant for one thing and to another for something else. This was coordination in action.

Our organisation is still in the throes of bringing together a dislocated system, moving to new ways of working and needing to make sure we focus on ‘what matters’. Reconnecting with that vision is being done against a vast backdrop of operational challenges (that word again) – staff changes, implementing new IT systems, premises development, etc.

Six weeks in

It's still early days for me. But, six weeks in (I do 2.5 days a week, so effectively with 15 days under my belt), my main areas of work seem to be emerging:

• Supported self-management (working with community and voluntary groups to develop a coordinated approach to people looking after themselves)
• Patient Information and Communication (making sure that people receive the right information, advice and support and that they are involved in shared decision-making and have access to their own health records)
• Patient Experience (making sure the organisations makes sense and use of what patients tell us – and that they help as partners to do that)
• Patient and Citizen Engagement (developing a People Bank that provides opportunities and support for people to work with professionals as partners for improvement and change)

It is within my gift to set the direction, identify the budgets and commission work. These are leadership responsibilities that many traditional patient and public involvement (PPI) or Patient Experience Leads would die for.

On my watch, I don’t want involvement of patients restricted to wheeling out patients at Board Meetings to tell their stories in order to provide a temporary ‘compassion rush’; patients’ passions withered by asking them what font size we should use for patient information materials, or considering whether the waiting room is painted light or dark green.

However, I almost missed a trick. My early plans stupidly omitted mention of how my work should affect ‘outcomes’ (getting better and/or being able to live life as best they can). This is what really matters to people who are unwell.

Maybe I’m habituated into believing that work on patient experience (the ‘soft’ stuff) belongs in one silo while work to improve outcomes lies under the auspices of the Department for Serious Stuff (aka medical/clinical director).

We’ve all heard of ‘patient-centred’ outcomes, with much of that good work being developed in research and academic centres. To become a serious part of healthcare delivery though, this work should be part of everyone’s job description. And, for a Patient Director, it cannot be allowed to slip off the agenda.

The omens are good. My colleagues have already brought me in to senior level discussions and decisions about outcomes. There is still a long way to go, but I edge closer to being able to influence thinking - helping patients and professionals to have conversations about such serious issues.

Avoiding a knee jerk reaction

Recently, the BMJ published a systematic review on the benefits and risks of knee arthroscopy (key hole surgery) and suggested, in essence, that it was of ‘low’ or (one could argue) ‘no’ value. Surgeons are basically doing too many unnecessary arthroscopies and in many cases, particularly where there is ‘wear and tear’ without other confirmed causes, should stop.

Never as a jobbing patient and public involvement (PPI) lead have I been involved in this level of discussion. But here, as Patient Director, I was joining the discussion: What should we do with that evidence? Should we change our guidelines? How should we have discussions with orthopaedic surgeons?

I have asked some questions, posed challenges and offered suggestions, trying to model the attributes of patient leadership. And we are heading, I hope, to more open discussions between patients and professionals on how we make decisions on the value of treatments.

We have also been holding discussions with professionals on how to develop a pathway for people with rheumatological conditions (including rheumatoid arthritis and osteoarthritis). I have been brought in early to discussions with my colleagues who see the benefits of making sure we involve patients and carers. The issue has been how, who and when, not the tedious ‘why’ or ‘whether’ to at all.

I won’t lie. There may be a tension between my views and some of my colleagues – but it’s about tactics, not intention. It rests on working out how best to bring professionals on board with a shared discussion and how best to support patients. But we are all serious about cracking on.

In the supported self-management stream, it’s the patient groups keeping us focused on the serious stuff too – what ultimately matters. We will develop modules on ‘getting into work’. In the patient and citizen engagement work, I want to bring patients into discussions with researchers on developing better outcome indicators and into multi-disciplinary teams to discuss how we measure success – something that our local commissioners are also committed to.

Patient Leaders at the Table

I am struck by the organisational commitment to open discussions on hot topics. This would probably be the case wherever there is decent clinical or professional leadership. But without serious patient input, professional assumptions about what is wrong and about the solutions will hold sway and discussions are narrow (see for example Patient-Led Solutions http://tinyurl.com/o7sqvpp).

Having patients and carers at board and senior level opens things up. Curiously, the recent Naylor Leadership Inquiry dismissed the notion of patients at Board Level. Alison Cameron, Michael Seres and I have written a forthcoming HSJ article in response.

Meanwhile, the recent HSJ Patient Leaders List revealed just how many patients and carers have stepped up – struggled, fought against the odds - into roles that are re-shaping health and healthcare.

A Patient Director with shared executive responsibility contributes to the collaborative leadership that the NHS sorely needs. Patient, clinical and managerial leaders are three legs of the leadership stool, working together to create the space for different sorts of conversations to happen.

This is a message, not only for local leaders, but also for Simon Stevens, Tim Kelsey, David Behan, Chris Ham, Nigel Edwards and Jennifer Dixon. Their organisations need to be role models for new forms of leadership. Likewise, charitable and patient organisations who claim to speak ‘on behalf of’ patients, but where patients seem not to be included (See for example: We Are All Patients: yes and no http://tinyurl.com/oxgccfn).

Let’s stop hiding behind ‘concerns’ about representation and the myths that lie behind many of the so-called ‘challenges’ to involvement, etc. Yes, some things are tricky to tackle. But often this is code for a deeper problem - professional and policy leaders unable or unwilling to share power (see The Rep Trap http://tinyurl.com/mhd6s5b) and blind to the benefits of doing so (See The Seven Benefits of Engagement http://tinyurl.com/npghyem).

How can one ‘think like a patient, act like a taxpayer’ if patients are not true partners? Only when patient leaders are valued and present at the table, can the NHS mirror – and pay its dues to - the seriousness of each unwell person who struggles into the consulting room. And to the hard up citizens that pay the wages.