Published on March 4, 2014

NHS Citizen in Manchester; my reflections

NHS Citizen

By Simon Burall

Simon Burall is a Senior Associate of Involve. He has extensive experience in the fields of democratic reform, governance, public participation, stakeholder engagement, and accountability and transparency.

Making NHS Information accessible

Graffiti wall illustration of NHS Citizen Assembly Question.

The NHS Citizen team is now dispersing after two intense days at the NHS Expo in Manchester. We ran our first test of the Gather Space and the Assembly Meeting, had a very public launch and a more in-depth seminar about the new system we are building.

Each team member committed to spending part of the journey home writing up ten reflections on the two days. Here are mine (wildly abusing the notion of what the number ten means):

Reactions to NHS Citizen and thoughts sparked

1. Last year NHS Citizen met with lots of sceptics, people who had seen the latest thing in participation come and go; they didn’t believe that what we were doing was different. A good number of them were at Expo. They made a point of telling me how what they have seen has changed their view; that they now believe that NHS Citizen could be different, they have become passionate advocates. Despite their support for NHS Citizen it’s clear that they are still committed to challenging us to get it right every step of the way.

2. These sceptics have been replaced by people who are coming into contact with NHS Citizen for the first time. Many of these are just as sceptical as the people we met last year. How can we go on a shared journey with these people while moving forward, making the progress we need to make to develop NHS Citizen into something that can promote real change?

3. People are not going to bring nicely packaged issues to NHS Citizen in ways that NHS England is used to thinking about the world. We felt this very clearly when we were in Stockport. I heard many people making it very clear that successful engagement will require a move from thinking about patients with this or that disease, to thinking about the whole person. We need to bring the human back into the system.

4. The issue that came out of Gather into the Assembly Meeting was about the accessibility of information within NHS England. This re-emphasised how much work we have to do if we are to make information about NHS Citizen properly accessible. I am going to have to ban the word ‘accountability’ from everything I say, for example. A challenge for someone who has spent his whole career working to strengthen accountability.

5. Improving accessibility also includes, but is certainly not limited to, getting better at getting the word out about what NHS Citizen is about, how it works and why we think it is different.

Gather test

6. We knew that it would be really challenging to connect the people engaging with Gather online with those coming to the offline session. Our first test of Gather demonstrated quite how hard this is going to be.

7. A key challenge is going to be speed. There are many different groups of people who will engage within NHS Citizen and different groups will be able to work at very different speeds. Citizens within many of these groups will need to be given many weeks discussing issues if they are to engage effectively. At the same time the Board is at the top of an organisation subject to a 24 hour news cycle, Board members may feel the need to engage at a much faster speed. This difference may present a real boundary around the types of issues that NHS Citizen can discuss.

The Assembly Meeting test

8. Individuals’ stories of their experiences within the NHS can be very powerful and can lead to wider debates about what systematic change is needed.

9. I felt that the first Assembly Meeting was successful at surfacing new issues for the Board members present and at generating real energy.  However, the physical space we had to use meant that it was difficult to be certain that we given everyone the opportunity to have their view heard, or to respond, if they wanted to.

10. Although we made a conscious decision to facilitate the Assembly Meeting rather than appoint a Chair or Speaker, it requires a very different kind of facilitation than we have been using up until now. My instinct to draw threads between comments was not right for the role; it was for Assembly Meeting members and Board members to make the links and not that of the facilitator. Developing a clear description of the role we need, and finding just the right person to fill it, will be critical to the success of NHS Citizen as a whole.

Whole system reflections

11. Most people will come to NHS Citizen when they have an issue with the way they have been treated by NHS England. As a result they will come with an identity – of ‘their disease’ or as a carer, for example. Many are likely to be strong advocates for their issue. I think one indicator of success will be if a proportion of these people start to bring their other identities to the system – as mother, grandchild or local councillor, for example – and start to make links between ‘their’ issue and issues brought by people with very different identities.

12. However, this will be very difficult to achieve; none more so than for NHS England staff and board members who may feel a duty to defend the organisation, their team or the decisions they have made in good faith. NHS Citizen has to help them to transcend their identities as much as it does citizens and patients.

13. Yet again the importance of linking local (where citizen energy often is) and national (where the Board’s role and responsibility largely lies) together was raised strongly. This is a key issue for us to solve.

14. We asked the Board members, Victor Adebowale, Ciaran Devane and Tim Kelsey to step well outside the roles they normally play. We placed them off the stage at the NHS Citizen launch, physically below a number of citizens. The Assembly Meeting was very cramped and they were forced into a tight space – certainly physically. They threw themselves into this new role with energy and good humour. We now need to start seeing new Board members present and actively engaging or they risk becoming more ‘usual suspects’.

The team

15. And most importantly of all, the NHS Citizen Team, made up from staff from five different organisations (Involve, the Tavistock Institute, Demsoc, Public-i and the NHS England Public and Patient Voice Team) did a fantastic job, both individually and collectively. They went well beyond what was required of them, and worked with energy and humour. They should feel very proud of themselves.

Photo credit: @smizz

7 Responses to “NHS Citizen in Manchester; my reflections”

  1. Johnny Hoover
    March 6, 2014 at 6:27 pm

    Some things have come together in the last couple of weeks which I think are “a gift from God” for the NHS Citizen project.

    Firstly, there was the announcement of the six-month delay to the roll-out of care.data. This decision was further underlined by the Health Select Committee hearing, where Tim Kelsey rightly said that the delay was to further inform about both the benefits and risks associated with care.data, giving people more information on which to decide whether they wished to opt in or out.

    Secondly, that same Health Select Committee hearing highlighted that there’s much more to the arguments than the project itself. The HSCIC were most definitely “in the dock” about not just their provision for the project, but their past performance. Patients cannot make an opt-in or opt-out decision without confidence that their data will be held securely.

    Thirdly, David Nicholson and Stephen Dorrell reiterated once again at Expo2014 that the NHS (and that means all of us) are going to face some pretty tough decisions about how we are going to restructure our service provision based on the new world order of limited funding, changing demographics, and new technologies (in both medicine and IT).

    And finally, NHS Citizen was launched. It is now live. It is here.

    It has always been expected that NHS Citizen has to be the place where hard things are discussed. Not a cosy debating chamber with no teeth, but a hard place, where citizens can say what they feel and challenge NHS England. But also (and this may often be overlooked) a hard place where NHS England could also challenge the citizens.

    Looking at what Nicholson and Dorrell were saying, there’s going to be some very hard discussions about acute service provision. Hospital facilities are going to be closed and merged. Maybe whole hospitals will be closed. People will not like it. But they’ll like it even less if there’s no open consultation. If NHS Citizen cannot create this forum, then it is surely of no value.

    But getting national discussion of what may be a local issue can be difficult. As you say, it’s easier to walk into NHS Citizen as “a cancer sufferer”, “a resident of Brighton”, or “a pensioner”, rather than say “I’m a Citizen”. How would a person in Ruislip be interested in a hospital closure in Bury?

    NHS Citizen is launched. It is now live. It is here. It needs to get people involved. It needs to get everybody across England involved. It needs to start with something national. It needs to start with something that we all have an opinion on. It needs to prove it can deliver involvement quickly. It needs to start now to support care.data’s 6-month process. It needs to show its teeth, by requiring not only NHS England to rise to the challenge but also (just like the Health Select Committee) for others like HSCIC to sit on the debate and answer the hard questions.

    1. Talk to med-confidential or maybe Ben Goldacre to get them to sponsor a clear motion in the Gather space. Something that says that we NHS Citizens will support continuation of care.data and we will stay opted-in, if we, the citizens, are given certain assurances. Let the proposer start with the list of what assurances they think we citizens need. (OK I know there’s one on there now, but I’d have liked the wording to be crisper)

    2. Publicise that care.data Gather URL mercilessly. Press releases. TV/Radio appearances. Email every HealthWatch, every patient group, every GP group, every GP patient group, every CCG. Blog, tweet… do everything you’re good at…

    3. Watch the Gather start to define the assurances people need. And keep bringing people to it. Connect to other forums where it is being discussed and link people to Gather. Refresh the message as the list of assurances changes with debate.

    4. In late May convene an Assembly, both on and offline, and livestream it. Invite Health Select Cttee members and everybody from the Gather space. Require care.data to bring their evidence and arguments and the citizens to bring theirs. NHS Citizen is built like an anarchist collective, so it’ll be messy and it may well get heated. Your challenge is to create a level of consensus to bring most people through to the end. Through to a point where the NHS citizens collectively say either “Yes, on the whole we’re happy with your assurances” or “No, on the whole we still don’t trust that you’re doing the right thing.”

    Tim Kelsey told the Health Select Committee that care.data still had value if 90% of patients opted out. Well statistically it might, but with only 10% support, then strategically it would be an abject failure. It is only by bringing the vast majority of people along with you that care.data and all the other projects that will follow can be successful. If you enter this process, then you must be ready to lose some of the arguments. But that is a price worth paying for trust, accountability and transparency.

    NHS Citizen was launched. It is now live. It is here. Use it!

    • Simon Burall
      March 7, 2014 at 9:27 am

      Johnny

      Thanks so much for your reflections, very much appreciated. You cut straight to a number of the key challenges facing us, particularly how to make the local debates and issues relevant to the Board at the national level, and visa versa, how to make national concerns important enough for local people to engage with.

      You are also right that NHS Citizen needs to become relevant very quickly. What we need to get the balance right with though is that while NHS Citizen has now been launch it is not yet a fully functioning system. I think you were watching some or all of the live stream of the Assembly Meeting for example. I suspect you saw how messy it was. We have not yet got consensus about who members should be (open access is one model, but it can be very exclusionary for the very groups who normally have their voices ignored), what the rules are and who should chair/ lead or act as speaker of it.

      We must get these things right, and involve a wide group of people in defining them, if we are to prevent it collapsing under the weight of expectations that people will have from it for a debate like care.data. One NHS Citizen Assembly Meeting can’t solve the whole issue and we need to make sure that we create a sustainable system that can deal with the next big issue that faces the NHS rather than trying to solve all the current issues.

      However, NHS Citizen is also a system for people to use and we need to be responsive to what people want to use it for.

      I’m excited by the potential, and slightly wary that it (and we) will collapse under the weight of expectations that people are beginning to place on it. We need to build it quickly and strongly so that people’s faith can be justified.

      On another note I really like the idea you bring out strongly that NHS Citizen must be a place where citizens can challenge the board, but that it must also be a place where the board can challenge citizens. We can’t shift power totally in the opposite direction!

      Thanks for your engagement with NHS Citizen so far, constructive challenge and critical ideas are what will make this work.

      • Johnny Hoover
        March 9, 2014 at 10:59 am

        Thanks in return for your comments Simon. I think I’ll have to come back on a couple of them.

        “I’m excited by the potential, and slightly wary that it (and we) will collapse under the weight of expectations that people are beginning to place on it.”

        Let’s be clear. The weight of these expectations is solely based upon the work you have done to raise these expectations. Two days ago Tim Kelsey said this:

        Tim Kelsey ‏@tkelsey1 Mar 7
        #ntsummit @roylilley: people love change if they think they’re in charge. Need to look at citizens juries” roy, come and join #NHSCitizen

        If you exhort people to enter the NHS Citizen tent, then you had better be bloody sure there’s something inside the tent when they get there. I suggested that a frank debate about care.data was exactly the thing that could make people think that there was value in NHS Citizen.

        “We need to build it quickly and strongly so that people’s faith can be justified.”

        That may be what you say, but when the chance arises to do that, you seem to be backing away. The concept of NHS Citizen was being discussed at Expo2013 and you then had a whole year to build it and then launch it. And yet you now say it wasn’t really launched at all and that you still haven’t worked out how it all works. How much time and money do you think you will be given?

        There’s a local HealthWatch meeting in March in my area, where, no doubt, care.data will be discussed. They launched an online consultation about care.data in Jan/Feb and had many responses, which were then passed up to HealthWatch England and acted upon. No doubt this process will continue and deepen over the next 6 months.

        The discussion of care.data will happen with or without NHS Citizen. It’s your choice whether you get involved. The people already are.

        • Simon Burall
          March 10, 2014 at 8:48 am

          Johnny

          Your comments are well made and well taken. We absolutely can’t be seen to be ducking the tough issues, as you say we have invited people in. However, I do think that it is a different thing to be open to whatever people want to talk about inside NHS Citizen vs proactively pulling the debate about the most contentious issues into it (at least in the very, very short term).

          If there is a clear movement to open the debate on any issue we will respond and find ways to make sure that the debate is heard by the board (it must be heard and acted on otherwise we’ll become another drain on people’s energy). However, right now we aren’t going to be actively opening any debate (indeed it would not be right that we did, otherwise it risks becoming our thing rather than something that is genuinely responsive to citizens and patients).

          And, as you say, the debate is happening anyway and elsewhere so there is a question about what the NHS Citizen space might add of genuine relevance in this context.

          Care.data is not the last big, controversial issue that will face NHS England. I want to be part of building something that is strong enough to engage much earlier in key debates, rather than being in a position only to respond to the latest crisis.

          I really don’t want to give the impression that I want to keep Care.data out of NHS Citizen, there are lots of reasons why it would be positive, but it would have to make a difference to the debate and decisions to be worth anybody’s time and energy.

          I don’t think we are that far apart in our views, just a difference of emphasis.

          • Johnny Hoover
            March 11, 2014 at 7:50 pm

            Fair enough Simon. I agree that we both want the same thing, namely we want a future where people are more involved in their care and more involved in the decisions made.

            Where we disagree is that you’re working to make this happen through the NHS Citizen project and I don’t think that NHS Citizen will prove to be a useful vehicle. As yet, you haven’t convinced me to change my mind.

            You’ve had a year to turn this vision into reality, and yes, I think that you should be in a position to inform the discussion about care.data. I still think it would have proved a golden opportunity. But you’re honest and open and said that you’re not ready just yet.

            My contention is that a year on HealthWatch have been forced to crack on, whilst you’ve moved too slowly. The illustration at the top of this blog being a case in point… its full of questions, but no answers.

            I’m sorry that your team’s obvious energy and also the generous funding for the project was not used to help HealthWatch.

            Nevertheless, you’re right that we want the same thing and I’m sure we’d have a great evening over a few beers arguing the best way to get there.

  2. March 29, 2014 at 8:37 pm

    Anything that evokes real change is a good thing. I think you should be commended on trying to debate the issues. I guess you live or die by the care you give (excuse the pun) and how that’s perceived by the public.

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