More than just stories: the Barker Commission’s experts by experience

At the launch of the final report and recommendations from Kate Barker’s Commission on the Future of Health and Social Care in England, Jeremy Taylor from National Voices asked the panel: ‘Is the Barker Commission’s expert by experience group a model that future commissions of this sort could learn from?’ My answer is, emphatically, ‘yes’, and in more ways than one. As the instigator of this group, I want to share my experiences.

The commission’s experts by experience were nine people with direct experience of using services on the borderline between health and social care. This group developed through discussions with the commissioners, colleagues and partner organisations like National Voices and the Centre for Patient Leadership. It was set up to work with the commissioners as equals, to complement their specialist knowledge with perspectives from service users. They advised the commissioners from the early stages of their thinking through to publishing their recommendations, and their advice is summarised as an appendix to the final report.

One of the commissioners, Julian le Grand, commented:

The commission spent a great deal of its time on government statistics and reports, and there was always a risk that, in its struggle with these and with the general mechanics of policy reform, it would lose touch with the reality of the health and social care world.

This statement has resonance for us all, because as professionals we are often at risk of losing touch with the human impact of our activities. The experts by experience helped the commissioners constantly to reflect ‘what will this recommendation mean for people needing and using services?’

My role was to help all this to happen, which I did in a number of ways:

  • brokering relationships, bringing the group and the commissioners into contact early and repeatedly to understand each other’s perspectives
  • challenging assumptions and providing reassurances
  • acting as an intermediary: summarising and presenting advice at commissioner meetings; editing drafts of the report; and creating a space in which the group’s voices would be heard.

Of course, my role wasn’t as simple as this makes it sound. I received plenty of support from commissioners, partners and colleagues but I also faced resistance, and I was curious about that. Setting up and running an expert by experience group like this mirrored what happens when the NHS tries to involve patients in decision-making. So I set myself a dual task: supporting the commission and the expert by experience group to work together; and using what I learned to inform our work supporting the NHS on the borderline between old and new ways of working with patients and service users.

It’s not just difficult processes or lack of resources that stop the NHS, policy-makers or The King’s Fund from involving patients as partners, branding it as too ‘risky’. There are other factors at play: power, control, identity, fear. When I suggested setting up the group, the idea provoked anxiety: what could this process unleash? And reticence: what’s the value of an ongoing dialogue when we could do focus groups? And co-option: a desire to treat the experts’ contribution as ‘stories’ rather than legitimate opinions about possible change.

Importantly, the commissioners and The King’s Fund took the ‘risk’. They invested in the experts by experience and involved them as valued partners, and in so doing proved that it isn’t risky to hear different perspectives. In fact, it’s only risky if you don’t want to take account of what you hear.

As one of the experts by experience, Clenton Farquharson, put it:

Co-production takes time and I’d like to thank The King’s Fund and its staff for the courage to let go of their power.

A decisive moment was when we sent a draft of the highly confidential interim report to the experts by experience. This shifted the balance of power and enabled conversations between them and the commissioners as equals. It built trust by showing the experts by experience that the commissioners would not withhold information, were not stifling them or keeping them at arm’s reach. In turn, the conversations proved to the commissioners the value of the group and showed that as a resource they offered far more than focus groups – and more than just stories.

This wasn’t a perfect model and there are things I would do differently: more work to establish the group; better support between meetings; more conscious acknowledgement of the power play at work; and (dare I say it?!) a patient on the commission.

In the words of another of the experts by experience, Dominic Stenning:

As the first expert by experience group working with the commission and The King’s Fund, we are treading new ground and laying the foundation for others to build upon.

By recognising that this is unfamiliar territory, that it makes us anxious, and then investing in relationships built on principles of openness and mutuality, professionals and patients working together can unlock powerful results. I hope that by sharing what we have learned we can unlock future expert by experience groups on other commissions and in the NHS.

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Comments

#116925 Michael Shepherd
Evaluation Manager
CQC

It would be good to compare the CQC use of Experts by Experience in the new approach to inspecting care services with that of the Commission.

#122638 Amanda Reynolds
director, strategist & coach
Blend Associates Ltd

delighted to see this write up. really important to talk about how to engage and its value. We will only solve the problems of NHS and social care by taking customers with us on journey as EQUAL partners. we can then authentically lead change knowing their full involvement. this is not easy work as shown here.

#137941 Steve Hampson
Head of Innovation & Programmes
Age UK

Our team of 180 Experts by Experience have participated in over 2000 CQC inspections over the past twelve months and they represent a huge force to improve health and social care services for older people. We're looking for more opportunities to engage them.

#137987 Mitzi Blennerhassett
medical writer, author, patient activist
freelance

Very encouraging to read about this real use of patients and their experience. Having worked in patient/professional groups since patient partnership was first mooted, including with the Medical Royal Colleges, I'd like to add to the comment, 'and (dare I say it?!) a patient on the commission' - not only dare to say it, but good practice would be to have at least two patients please.

#161704 Becky Seale

Thanks for all comments and words of encouragement.

Steve perhaps it would be good to connect to compare notes? Although obviously the tasks were very different, there may well be useful synergies, as Michael says.

Mitzi thank you for your helpful challenge!

If any of you, or indeed anyone reading this, would like to input your ideas and experience to our enquiry into the role of patients, service users and carers within collective/collaborative leadership models, please do get in touch direct b.seale@kingsfund.org.uk

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