On September 18th, the NHS Citizen project ran a test version of the third stage of its process for bringing issues that matter to the public to the attention of the NHS England Board — the Assembly. I attended interactively online, one of just a few people who chose to do so. Other people were able to see the proceedings without directly participating.
This test Assembly had five broad themes, or rather, four broad themes and one narrow one:
- Access to services
- Mental health
- Gender identity services
- Self care and personalisation
- Young people’s healthcare
Because people willing to participate online were so few in number, there was only one online discussion and that was about access to services (supposedly). I was torn between watching the mental health discussion without participating, and participating in the access to services discussion. Participation won, and I joined the access to services discussion.
The main Assembly was a live event in London, attended by about 250 people.
Before the Assembly started, information packs were published to provide factual information about the five themes.
I didn’t have a lot of time to research access to services, and it isn’t a subject I know a lot about. In the previous stage of the NHS Citizen process, Refine, the relationship between GP appointments and problems in A&E received the most votes in the access to services category, but the information pack contains almost no information about it. There’s a chart showing that it hasn’t very often been in the top five access issues in local Healthwatch reports. Speed of appointment has been the most common access issue by far.
The information pack on mental health was a bit better. The top idea in Refine was parity of esteem for mental and physical health, and the information pack does mention parity throughout. An appendix lists seventeen key attributes of the vision of parity. However, the body of the information pack doesn’t provide much information specifically about the key attributes.
The online discussion used Disqus, a 3rd party service that can embed a discussion forum into any website. The way Disqus works, when you think you’re commenting on a particular page on a particular website, your comment is actually being stored in a Disqus database. Even if you don’t comment, Disqus can act as a conventional tracker storing details of websites and pages you look at. So Disqus collects exactly the kind of information that’s useful for political and lifestyle profiling. For this reason I normally block Disqus along with other common trackers. Websites that use it don’t get my participation, and they don’t even know that because I can’t submit a comment to tell them.
For this test I turned off quite a lot of the privacy protection that I normally use on the Internet. In fact I spent quite a while turning things off and trying to get Disqus to work, until finally it seemed to work well enough for me to participate in the test. It still had some problems, like sometimes not refreshing for several minutes, but I’m not sure what caused those problems. Anyway, now that the test is over I have no plans to re-enable Disqus and let it track my Internet use or opinions.
Another problem with Disqus is that it was configured to allow nested comments. You could reply to a comment and then someone else could reply to your reply. This was fine for replies to a recent comment, but replies to older comments far down the page easily went unnoticed. On the other hand, the nesting was useful to understand what people were replying to. When Disqus ran out of nesting levels the thread of the conversation became unclear.
Access to services
The access to services theme had arisen from nine ideas in Refine that had mostly been about primary care (care provided by GP surgeries). But in the Assembly test the ideas in Refine were largely ignored and participants suggested new ideas for discussion. Many of the new ideas didn’t have any very obvious relationship with access to services.
In the online discussion group we sort of ended up discussing joined up patient records. I hadn’t been aware that records aren’t joined up, because when I was very ill last year there didn’t seem to be any particular problem with information being shared between the various people in various organisations who were involved in my care. But it seems some people have experienced big problems in this area.
We were just getting into this discussion when a non-executive director of NHS England, Lord Adebowale, turned up and changed the subject. He wanted to talk about people’s ownership of information about them, and about governance and transparency in relation to that. This had little to do with joined up records, and little to do with access to services, but we discussed it for a while anyway.
After a little while Lord Adebowale disappeared and Simon Stevens, Chief Executive of NHS England, took his place. So we changed the subject again and for a while we discussed the challenge of improving services.
In the live discussion group in London they went off in a different direction, according to a summary report presented by one of the group. They seemed to end up talking about cuts to healthcare provision and lack of accountability at both local and national level.
From what I gather, in the mental health discussion people expressed great dissatisfaction with services, which Sir Bruce Keogh later described as:
“utter frustration, anger and anxiety”
However, there seemed to be widespread belief in myths of mental illness being preventable by diet, exercise, or waving some kind of magic wand over children in schools.
One participant, summing up, said something along the lines of:
“Parity of esteem! What does it mean? Bring it in as soon as possible!”
The goldfish bowl
A confused session towards the end of the live Assembly was described as a goldfish bowl in which some presenters from the discussion groups were the fish. While they were in the bowl they could speak about their experience of the discussions, and then they could jump out of the bowl and other people from the audience could jump in and become fish. Or something.
It must have seemed like a good idea at the time. One of the fish, when asked about his experience, said simply:
Connections between the Assembly and the NHS England Board were provided by Board members being present in the six Assembly discussions (five live and one online), and by a final session in which they spoke about what they had learned from the event and what they were going to do about it.
What they said was largely waffle, although to some extent that reflected chaotic and unfocussed discussion during the day. At last Tim Kelsey, NHS England’s National Director for Patients and Information, when put on the spot, bravely blurted out the truth, which is that real commitments need thought, adding:
“It would be utterly dishonest of me to make meaningless promises.”
The NHS Citizen team has pulled off a remarkable feat in getting test versions of Gather, Refine and the Assembly to bring real people’s real concerns to the attention of the NHS England Board. It’s a given that all this was just a test, and there are many gaps. But there are so many gaps that it’s hard to know where to begin describing them.
I’d like Gather, Refine and probably any online discussion component of the Assembly to be integrated on a single platform, so that everything works in the same way and there’s less opportunity for valuable contributions in the early stages to be discarded later. It was too easy in this test for a cutting criticism of the NHS in Gather to soften gradually into a barely related “wouldn’t it be nice if” in the final summing up.
I’d like moderation to be progressively tighter and tighter through the process, allowing very free discussion in Gather, but encouraging more focus in Refine, and demanding absolute focus in the Assembly (both online and live). The outcome of an NHS Citizen discussion has to be a position that allows the slipperiest of NHS England directors no wriggle room. That’s exceptionally difficult to achieve, and the facilitators of today’s discussions came nowhere near it. It’s even more difficult to achieve when the directors whom you’re hoping to hold to account can wander in and derail your discussion. Assembly facilitators should outrank mere directors.
The value of information packs is doubtful. To a large extent they express the current NHS England view. If the current NHS England view is wrong, the information pack will never say so. It would be better to integrate independent information sources in Refine, somehow, if that could be done. That, too, is exceptionally difficult to achieve when NHS England largely controls the information published about the NHS. There is, however, just to mention two examples, available data on the relationship between GP appointments and A&E workload, and data on the failure of all attempts anywhere in the world to prevent mental ill-health through school programmes, which could have informed today’s discussions but didn’t.
Online discussion in parallel with a live meeting needs some kind of special handling because it moves so fast. If we had been a larger online group it would have been very hard to follow what was going on. I can vaguely imagine a combination of stricter facilitation with software that shuts down private conversations off the current main topic, but I’m not at all sure what would work well.
The three stages envisaged for NHS Citizen seem to stop well short of holding the Board to account. There has to be something else that closes the loop, when the Board reports back to NHS Citizen with commitments and outcomes, and citizens respond with a final verdict. That can’t happen in the Assembly because the Board needs time to formulate genuine commitments and to deliver outcomes. It’s a long time since I read the design documentation, so perhaps I’ve just forgotten, but the thing seems to want a fourth stage connecting back to Gather — citizens came up with this idea, and it was refined, and went to the Assembly and to the Board, and now it’s happened.
For what it’s worth that’s my immediate reaction to a memorable day, the very first NHS Citizen’s Assembly, and I was virtually there!