Joining up ‘co-production’ and ‘patient leadership’ for a new relationship with people who use services

David McNally, Head of Experience of Care at NHS England, talks about a new, simple model to help health and care organisations embed co-production into their day-to-day work, and about working with patient leaders.

Co-production is for the whole NHS. It is how we should all be working – doing with and not for, or to, people – not just sometimes, but all the time. The recently published, ‘Co-production Model’ has been developed by patient leaders and others, supported by the Coalition for Collaborative Care. It is a simple guide to ensuring that the voices of people with lived experience are included in decision-making, from commissioning to co-design and co-delivery.

The job of the Patient Experience Team in NHS England is to support the NHS to improve people’s experience of care and we aim to do what we do through co-production. I am surprised how frequently we still find commissioners making decisions about improving people’s experience of care without involving people who use services.

There are aspects of the patient experience that are so important to patients and service users and carers that providers should aim to perform them consistently for every individual, every time. This is the definition of an Always Event. A fundamental principle of Always Events is that they are co-produced with patients and service users and staff. NHS England is working with the Institute for Healthcare Improvement (IHI) and Picker Institute Europe to spread the use of Always Events throughout the NHS.

People who use services are also co-producing checks on the quality of NHS services. NHS Quality Checkers is a programme which ensures that people with a learning disability and/or autism co-produce the right tools that measure the quality of both mainstream and specialist NHS services.

One idea that exemplifies co-production, in which there is increasing interest, is that of working with patient and carer leaders. The King’s Fund has recently published a report – ‘Patients as Partners’ – on their collaborative pairs programme. NHS and patient leaders in the South Region are running a ‘Leading Together’ programme – also an NHS Leadership Academy pilot. Both link patient leaders with a clinical or managerial leader to work together on a real local challenge.

The Centre for Patient Leadership described patient leaders as “patients, service users and carers who work with others to influence decision-making at a strategic level.” For National Voices, patient leadership “describes an aspiration that a portion of (these active) patients may come to be recognised as service leaders, equal in esteem and influence to managerial and clinical leaders.”

NHS England commissioned a project to understand how patients and carer leaders can make a real difference in improving experience of care. We undertook the project throughout on the basis of co-production with patient and carer leaders.

We found out that patients and carer leaders can make a real difference in the attention that experience of care gets alongside clinical effectiveness and safety, and that they can influence NHS organisations to act on patient and carer feedback. To make this approach work the NHS organisations need to; invest in patient leaders; put robust feedback mechanisms in place, and; develop a culture to act on feedback.

Now is a good time to join up our thinking about co-production and patient leadership. If co-production is how we should do everything, then patient leadership enables us to have co-produced system leadership to support continued improvement in experience and clinical quality based on what matters most to people.

The King’s Fund is calling on every NHS organisation to commit to working with patients as partners. We could start with senior leaders in national NHS bodies modelling co-production with patient leaders in an open and transparent way, and then spreading this way of working throughout their organisations.

You can read more on the ‘Co-production Model’ in this feature on the Coalition for Collaborative Care website.

David McNally

David McNally has been Head of Experience of Care with NHS England’s Patient Experience Team since 2013 and is a member of the Co-production Model Steering Group. He worked previously in an SHA, a PCT, Adult Social Care and the voluntary sector.

Last year he led a project to find out what impact patient leaders can have on improving experience of care and has been invited by the French National Authority for Health to talk about the project at a seminar in Paris in November with along with Steve Sharples who is a Patient Leader.

In April David co-designed and co-led a round table on Patient Leadership with patient leaders, the King’s Fund and the Leadership Academy and next year will be running a session on ‘Patients as partners in the business of improving experience’ at The Beryl Institute Patient Experience Conference in Denver with Mark Doughty from The King’s Fund.

He is a member of the Researcher-Led Panel, National Institute for Health Research, Health Services and Delivery Research programme and an Honorary Senior Lecturer at the University of Manchester, Medical School.


  1. NHS England says:

    Thank you to all of you that have taken the trouble to comment on my blog on co-production and patient leadership.

    I can’t really comment on the view that Nic Bray put forward that parts of NHS England are moving away from rather than embracing co-working as I’m neither familiar with the detail nor have overall responsibility for our involvement work. I would say though that, as an NHS body, all parts of our organisation have a clear legal duty to involve patients and the public in their work.

    A number of people raised a point about the representativeness of patient leaders. The same debate has of course gone on around the different forms of involvement structures – PPI groups etc. – in the NHS over quite a few years. The reality is of course that there isn’t a representative structure relating to the NHS and it is very difficult to see how we could go about creating one when there are such a wide range of different groups and interests.

    What NHS staff and managers with an honest commitment to working in partnership can do in planning specific services is work with both groups of individuals with relevant lived experience and, people, like Nic, who genuinely seek to represent the collective view of a particular group. I see patient leaders not as representatives, but as people with lived experience who have capabilities and skills to work in partnership with clinical and managerial leaders at a more strategic level and it seems to me that rather than be self-appointed, we do need open and transparent processes to recruit patient leaders.

    I hope it came across in my blog that I see the publication of the Co-production Model as a timely opportunity for the NHS to more consistently work in real partnership with patients and carers. In my team, which supports the NHS to improve people’s experience of care, we think it’s the only way to be our job properly.

    Best regards
    David McNally

  2. Lisa says:

    I couldn’t agree more that co-production is how all of the NHS should be working.

    I’m interested in how patients, service users and carers were involved in co-producing this article and would love to hear about their experiences of co-producing with professionals.

  3. Kassander says:

    @ ​Nicholas Bray
    ​”​Patient Leaders are getting the distinct impression of having their advice ignored in favour of engagement with organisations not representative, or truly cognisant of communities, stakeholders and patients​”
    I am at one with you Given the grappling iron hold Govt ​has on these organizations would they dare to represent the authentic voice of P&P, if they still knew how to access it?
    A clear demonstration of this corporate capture of the P&P voice was manifest at Thurs’ NHSE Board [29/9] when PPPI’s relaunch of Citizen was accepted
    Much welcomed was its claimed role as Challenger of Orthodoxy, and Holder to​ A/c of the Board.
    BUT, the custodes who would enable such challenges are exactly ​(​18i) as you write, with CQC-HWE atop the list.
    The relationship between owners and executives is well established
    And as Ms Everitt has posted “The NHS belongs to the people …”
    “Ita ut sit”

  4. Nora Everitt says:

    Who are these Patient Leaders?
    How do they speak for me when they haven’t asked me what I think, what services work well for me, where the gaps are, what improvements could be made?
    Some of us lesser mortals – members of the public – and ordinary people who are sometimes patients – have much knowledge about services and much experience at strategic level. Imagine that!
    How are such informed ordinary people to become involved in shaping and scrutinising services when so many jumped up ‘Leaders’ are treading on our shoulders to become important – on our behalf?
    Who asks us what we think?
    We don’t push ourselves forward for the £150 per day because we actually recognise that everyone has a valid contribution to make.
    We also know the wider public have a right to be heard – not just these self-styled Leaders.
    Can any Patient Leader tell me how the ordinary public actually have their collective, national voice heard in OUR NHS?
    The NHS belongs to the people, not just the few of you.

  5. Kassander says:

    McNally states elsewhere that Patient Leaders (PL) “are people who invest their time and resources to influence decision-making at a strategic level that improves care experience” People (Ppl) worthy of praise and recognition, but that doesn’t make them PLs
    In liberal democracies leaders are elected by, and are answerable to, an electorate. Nonsuch is evident in this model where ppl and organizations declare themselves to be PLs, or have such thrust upon them by those who understand hierarchical control, but not the voice of P&P expressed thru’ their mandated delegates
    Consider the
    Appointment of Lay NEDs by CCGs
    VCS; HWs; NV on NHS groups purporting to be PLs
    Growth industry in the training of PLs as NHSE presses on with its faux co-productions
    All are evidence of that need for hierarchical control
    Until the state & centralized services adjust to being servants of the ppl, and their contact is via the ppl’s chosen leaders: Everything will be about us, but without us

  6. Charlotte Green says:

    Dear David
    I am in touch with a lot of mental health service users and carers who value opportunities to participate in initiatives appropriate to their skills. I would be very grateful if you could forward me as a contact person for any initiatives looking for service users and carers.
    Many thanks
    Charlotte Green
    PPI Lead

    • Kassander says:

      @ Charlotte Green
      As my onetime Community Work colleagues used to say to utterances such as your :
      ” appropriate to their skills.”

      Would you care to unpack that, please.

  7. Louise Rendle says:

    As Chief Exec of a User Led organisation, it is great to see co-production being encouraged. Our organisation has 25 years of experience in collaborative work both Nationally and locally. However despite proving time and time again how important and productive true involvement is,(not just rubber stamping once something has been designed), we still struggle to embed this approach into everyone’s thinking and practice. I welcome anything that will make it easier for people who use services to be involved and for their voices to be heard and valued.

  8. Maureen Brown says:

    What a great way forward. I am a small part of around 14 users groups at Ipswich hospital. We have a good relationship and do have input to services approach in a limited way: nevertheless it can be very rewarding to users and to staff. To have a user recognised as a leader in services would be a positive step in real terms.

  9. Pearl baker says:

    It is important to recognize patient Leaders, and not just recognize organizations, many like myself have for many years worked Independently. I was the Carer representative on the MHNS Framework, with my own registered charity N.A.R.M.I i retired ten years ago, and returned to campaigning five years ago.’fit for work’ campaign brought responses from the Ministerial Office. Mentally Ill in my area had there Bus Passes withdrawn, my campaign to have them re-instated was successful on the grounds of Discrimination. Section 117 patients placed into Supported Accommodation by the LA being charged illegally is under investigation, my evidence is supported by the CQC and still with the DWP. The OPG will be my next target, they speak of ‘Safeguarding’ issues, and unmet needs, but fail to understand the Deputy is inadequately trained for the ‘job’. Residential Care for those with Dementia is a serious concern, many are left ‘wandering’ corridors, and lying in bed with no interaction.

  10. Keymn says:

    David its ways great to work with someone who gets co- production. The blog says it all and it has been a great experience to work alongside you to develop this model.

    Keymn Whervin


  11. Nicholas Bray says:

    David – as a Patient Leader that is very keen to continue to co-work with NHSE I am finding parts of it that used to show promise of understanding co-working are now not.
    In fact, Patient Leaders are getting the distinct impression of having their advice ignored in favour of engagement with organisations not representative, or truly cognisant of communities, stakeholders and patients.
    As you can imagine those of us currently engaged with the NHS are worried. This is not a good path to proceed down and we urge the NHS to stop and very carefully think whether, in the long term, such policies are really a good idea as we fear they’re not…

    • Kassander says:

      @Nicholas Bray
      I would find it most useful, and generous of you, if you would offer your definition of your status as a “Patient Leader” (PL). For example:
      What constituency do you represent, and how were you elected / appointed, to be their PL, please?
      How are the stances you promote at NHSE, and other meetings, determined and agreed by your delegating P&P?
      Is perhaps your position similar to that of an elected governor of a hospital CoG?
      Thank you.

      • Nicholas Bray says:

        I’ve worked with my seldom heard community, since 1993, at all levels, with its organisations & lots of its individuals, locally, nationally, & internationally.
        I’m an activist, adviser, awareness raiser, advocate for individuals, campaigner, critical friend… the list goes on!
        I’m a familiar face in my community & quietly go about my work connecting with, hopefully getting good pictures of its issues & opinions – it’s important they’re represented as broadly, honestly & fairly as I am able.
        It’s a difficult & thankless task, full of small “p” politics, & I receive some recognition from my community, but am seldom paid for my work.
        When organisations need my specialist help, I give them honest, balanced, informed pictures, not just ones that “chime” – they’re wasteful, unhelpful & counterproductive.
        Which is why I’m concerned about NHSE. There are parts of it that are now ditching people like me that help it form its community pictures – why?

        • Kassander says:

          Thanks for confirming my suspicions, you’re self elected.

          “There are parts of it that are now ditching people like me that help it form its community pictures – why?”
          Quite easy to explain really.
          NHSE wants compliant so called representatives of P&P, and where else to find them than in the so called VCS. After all, they’re part of the state sector now, doing the jobs that used to be undertaken by highly skilled and trained people. [But at a fraction of the price]
          The counter trend is for delegates selected by P&P.
          You’re neither, so will suffer the fate of the fly caught between two biscuits.