Patients and Pastries Included: Why we need partnership in policy making

It’s time for patients to be true partners in healthcare policy. Partly because I want pastries. But more seriously….

My research on the benefits of patient and public involvement in service improvement (See ‘The Seven Benefits of Engagement’ ) showed that it can:

  • Yield richer insights into problems
  • Offer a wider set of solutions
  • Bring individual benefits (to staff and patients)
  • Change conversations and build better relationships
  • Promote trust and better quality decisions
  • Improve and change healthcare practice
  • Sustain and help scale up improvement work

If this can happen at local level, it can happen nationally. But healthcare policy is led by the elite – politicians, healthcare professionals and managerial leaders – all assuming they speak for patients. Patients are excluded. As a result, the need for patients to be part of leadership systems and culture goes unrecognised.

Local isn’t enough

At local level, HealthWatch(es), Patient Participation Groups, CCG Lay Members and the like do what they can in the face of continued marginalisation, and there are outstanding examples of local partnership work. Yet the overall impact of involvement is buffered due to the way it is done (see blogs: ‘The Engagement Industry’ and ‘The Rep Trap’).

New forms of patient leadership emerge through the cracks. Sisters (and brothers) are doing it for themselves: Patient entrepreneurs invent apps and new solutions to unmet need; supported self-management initiatives are spreading, with patients co-designing and co-delivering programmes;  online communities are taking control of, and sharing, data; peer-to-peer support workers, lay health trainers and community champions are the emergent trusted healthcare workers.

There is no lack of reports and even some funding for new (local) ideas. Witness NESTA’s People Powered Health programme, the IPPR report on future potential of patient-centred care, (some of the) King’s Fund work on Shared Leadership, the various projects funded by the Health Foundation that are pioneering local partnerships. Even the private sector is in on the game, producing snazzy reports on the future march of (local) and digitally connected patients.

But ‘local’ isn’t enough. You can’t argue for ‘asset-based’, ‘citizen-driven, ‘patient-led’ service development, whilst ignoring the need for those very same principles in policy development. The local seeds of this new patient movement will not grow in a barren terrain, beneath a grey policy sky.

Patients excluded

Patients are often invisible when it comes to policy formulation. Care.data was developed ‘for patients, without them’. And, in my opinion, failed first time around because of it.

A&E problems might be aided with a solid dose of patient-side common sense. Despite my blog on ‘patient-led solutions to A&E problems’ being popular, it remains disappointing that nobody has had the gumption to include patients in striving for the answers.

I have lost count of the number of pastry-fuelled breakfast debates and conferences on ‘important issues’ that fail to address patient-led solutions. I am still waiting for my croissants. If patients are included at all, it is to tell their ‘personal story’. A few seize the opportunity and stretch their remit to instil the strategic lessons. But their role is often proscribed – inspire the audience, make ‘em cry.

National inquiries and reports also exclude patients. Few recommend power sharing at the top tables. Patients are not members of panels and do not set the terms of reference. It is hardly surprising that they do not then listen adequately to patients, or see patient leadership as important.

The recent Naylor Inquiry into NHS leadership ignored evidence from us as Patient Leaders (Alison Cameron, Michael Seres and myself) and we have written a forthcoming HSJ article in response to his dismissal of ideas on patient leadership.

The Rose Inquiry into leadership focused on what (professional) ‘system leaders’ should do better. Patient-centred solutions are lacking. This is hardly surprising when you look at the list of the great and the good that Rose talked to. Most of them are clubbable, in the posh rather than violent sense. They regularly meet over morning pastries.

There were no patients on the recent Health Foundation and Kings Fund team that called for a ‘Transformation Fund’. Yesterday, I received an invitation to a King’s Fund event on shared leadership, aimed at (only) ‘clinical and managerial leaders’.

Even The Francis Report failed to address the need for changing power relationships ‘at the top’. Yes, patients gave harrowing evidence of what happened at Mid-Staffs. Patients can tell their stories. But they were not part of interpreting what happened, helping to come up with solutions or shaping recommendations.

As a result, Francis failed to suggest new forms and levels of engagement. Rather, there was a tired call for more traditional ‘governance’ and feedback mechanisms (mirroring precisely the traditional process of professionally-led inquries). Without patients as partners, the potential solutions are narrowed. Just as they would be at local service improvement level.

Turning the tables

But hang on. Let’s praise the Royal College of Physicians for including members of its Patient and Carer Network in the ‘Hospital of the Future’ Inquiry. The Berwick Report went part of the way too, calling for patient and public engagement ‘from Ward to Board’.

Hats off also to the Barker Commission (supported by the King’s Fund) that included a properly supported patient and user panel. HealthWatch England has done a couple of barnstorming reports – on complaints and on leaving hospital care. So, it is possible. Let’s build on these and a few other shining examples. How?

I have been harbouring a mischievous idea for some time. How about if we ran a patient-led inquiry, or one that was truly co-produced, into the state of involvement in healthcare policy?

It could throw light into the dark corners of national level decision-making. Wouldn’t it be fun to ask Tim Kelsey how patients were really involved in care.data? Or why Robert Naylor ignored our ideas?

The serious connection is this: If patients, users and carers are excluded from shaping policy, recommending that patients can be leaders, or in influencing system-wide change, then ‘patients at the heart of healthcare’ can be seen for what it often is: Empty. Words. And worse: Local patient-centred work will remain stunted.

A patient-led inquiry could help change things. It could be one opportunity to lead debate on what needs to happen to foster true patient leadership – at local AND national level. It might produce ideas that would truly change things. Without patients as partners at all levels, the NHS is unsustainable.

It could also model a different way of doing things. It could embody true partnership and yield the sorts of benefits I found were happening in local service improvement work. We  could turn the tables, literally and metaphorically.

I’d love to work on this. Anyone interested? Patients and pastries included.

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8 thoughts on “Patients and Pastries Included: Why we need partnership in policy making

  1. What a wonderfully mischevious idea to initiate a patient enquiry.I recently stumbled upon your blog and find it refreshingly inspiring. I’m in a dual position terms of service delivery and as a “consumer”. Feel free to contact me with further details on this idea. Great potential here.

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  2. A great analysis here David and well balanced to show where and how true partnership in healthcare can pay great dividends in human and financial capital.

    I will also add as a good example the work being done by the Coalition for Collaborative Care https://twitter.com/Co4CC and declare my interest as a patient member of the coproduction group. Dr Martin McShane https://twitter.com/docmdmartin England’s Director for Long Term Conditions understands the need for partnership with patients and carers and is actively working with C4CC members, and others, at policy and strategic level which is really refreshing and productive.

    But much more needs to be done to get this practice embedded system wide from strategy to practice until we don’t have to talk about it any more as it becomes just common practice.

    I’ve pondered on the idea of a patient led enquiry but just wonder if efforts really need to be put into a ‘patient focus’ enquiry maybe but which is planned and delivered in true partnership with clinicians and managers? If not modelled in this way couldn’t patients be in danger of falling into the trap of single silo thinking and I don’t think any one group out of all the potential players in such an event have all the answers but together we might?

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    1. That’s why I said patient led or ‘co-produced’. The true meaning of patient leadership incorporates a mindset of collaboration and dialogue in any case. But any inquiry process also needs to be independent of the system so there is a slight tension here to be worked through.

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  3. Great idea,
    Prioritise patient enquiry, followed by experience based co-design solutions to improve service and care

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  4. I have been a caregiver for over 5 years while my husband had 9 operations; a tragedy of errors. Speaking to different groups on our experiences results in their sympathy and me being a victim, again. Several years ago I was a change manager and learned not to work harder than the sponsor of the change. The government seems interested only in sound bites and the next election. However I am hopeful, still.

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  5. Hi David, I hope you have had a good response to this invitation. I am definitely interested in working on this with you. I look forward to hearing more. best regards Barbara Hankins

    _____

    From: Future Patient – musings on patient-led healthcare [mailto:comment-reply@wordpress.com] Sent: 31 July 2015 08:29 To: barbara@catalystforchange.co.uk Subject: [New post] Patients and Pastries IncludedWhy we need partnership in policy making

    davidngilbert posted: “It’s time for patients to be true partners in healthcare policy. Partly because I want pastries. But more seriously.. My research on the benefits of patient and public involvement in service improvement (See ‘The Seven Benefits of Engagement’ ) showed “

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  6. I think this is an excellent idea. I agree about the empty words. Co-production seems to be the Word of the Day, but as someone pointed out while going though co-producation for a new Education, Heath and Care Plan, all it means is that instead of the parents sitting outside the room during meetings, they now get to sit inside the room. But nothing much else has changed.

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