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 These sceptics have been replaced by people who are coming into contact with NHS Citizen for the first time.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