NHS Citizen progresses

cat-NHSENHS Citizen, the public engagement project being run on behalf of NHS England, continues to develop, although I’m still not quite sure where its development is heading or where it will end up. The uncertainty seems to be partly deliberate, so that the project can shape itself to what citizens want it to be. I continue to find the whole idea intriguing and exciting, but also a bit mystifying.

NHS England, formally (and formerly) known as the NHS Commissioning Board, is one of the top-level bodies running the NHS in England. It holds some contracts directly with providers — for primary care (GPs) and for some specialist services (for example, national screening programmes). It works with over 200 local clinical commissioning groups (CCGs) that hold contracts for secondary care (for example, hospitals). So NHS England’s work is complex and wide-ranging, but it doesn’t control the whole of the NHS directly.

Scope

At an NHS Citizen design workshop in October last year, NHS England’s limited scope did not seem to be clear to many of the participants. There seemed to be a feeling that NHS England is in charge of the entire NHS, when in reality NHS England can only influence certain parts of it. A discussion paper from around that time recorded this bluntly (my emphasis):

There is an ongoing conversation, instigated by NHS England but actually much wider than that, about increasing the accountability and participation/democracy in NHS decision-making.

A corollary of this scope delusion was that public engagement at other levels of the NHS was largely ignored in the workshop. For example CCGs and GP surgeries are supposed to engage with the public, and most NHS secondary care is provided by membership organisations that the public can participate in (NHS foundation trusts and some provider charities). The public’s role in Healthwatch also seems unclear to NHS Citizen developers. (This is not necessarily a criticism, because the public’s role in Healthwatch is unclear to Healthwatch itself as far as I can see, as a member of the public.)

Tim Kelsey, NHS England’s National Director for Patients and Information, speaking at the workshop, tried to clarify the scope issue:

“This is about supporting the purchasing, if I can use that phrase, of services from health and care providers that are in the interests of patients. It is specifically supporting the body [NHS England] that’s just been given the privilege of spending £96 million of our money, public money, on health services.”

And moments before, he tried to warn about mistakenly thinking of NHS Citizen as having top-down control of the patient voice throughout the entire NHS:

“There are probably thousands of groups all over the country, [and] individual people, advocating for changes in local health services, in national health services, and all/many of them doing a fantastic job. And the very last thing we want to do is to in some way kind of nationalise them or impose a sort of constraint upon them or some sort of standardised approach to doing things. So this is absolutely about finding a way of, as the lady said earlier, …of facilitating them. It’s actually about how we can encourage them to speak clearly to different parts of NHS England about what they think should be happening.”

Later, he reiterated:

“This is absolutely about facilitating everything that’s already there. It’s not about in any way trying to pose challenge to it or monopolize it… But it is also about trying to distil out of it a very specific purpose, which is to inform commissioning of services…”

In the months since that workshop, clarity about scope does not yet seem to have emerged. The most recent piece of development work was an NHS Citizen presence at Health and Care Innovation Expo 2014 (NHS Expo) in Manchester on March 3rd and 4th, and several people who took part have published their thoughts on how it went.

One of these people, Andrew Brightwell, of Public-i (one of the consultancies running the project), wrote “a quick post with…reflections about NHS Citizen” that stretched to 1,300 words without mentioning NHS England, or England, at all. He (sort of) concludes:

“The NHS is bloody amazing”

He’s evidently convinced of NHS-wide scope for the project, including Scotland, Wales and Northern Ireland, and NHS-deep scope as well, including local commissioners and NHS providers — maybe third sector and private providers, too. Alternatively, he hasn’t ever thought about it. I’m not sure which is scarier.

Thingness

An apparently mystical concept, which one might call thingness, has crept in to descriptions of what NHS Citizen is. “NHS Citizen is not a thing”, the initiated are now supposed to say, knowingly. According to Andrew Brightwell, this is meant to convey that NHS Citizen is not in any sense an institution, that it’s not organised in any way. Clearly, this is utter nonsense.

The effect of requiring belief in nonsensical statements like, “NHS Citizen is not a thing”, is to create an initiated class, a priesthood, consisting of people who “get it”, separate from the rest of us who don’t. As Andrew Brightwell observes:

“…some people will never get this: I know I’ve said that everyone has the chance to take part, but I am still pretty sure that a lot of people will remain sceptical about this project irrespective of what we do.”

And yes, if they carry on like this I completely agree.

Actually, “not a thing” is less mystical than it seems. It’s a reference to Karl Marx’s Das Kapital (Volume I, Chapter 33, for example):

“…capital is not a thing, but a social relation between persons, established by the instrumentality of things.”

For NHS Citizen, what “not a thing” is intended to imply, I suppose, is that how people interact, the “social relation between persons” is more important than the specific details of the organisation. An unintended (?) consequence of using the phrase, however, is that it functions as a kind of Masonic secret handshake suggesting that further Marxist thinking is welcome in the project. I’m not sure how this might ultimately affect the project’s future.

Thingness is not an entirely pointless concept. It is useful to ask, “Is NHS Citizen a thing?” The answer, trivially, is “Yes, of course it is!”, but the next question is more interesting: “What kind of a thing is it, then?” The answer to that, at the moment, must be that it’s both a brand and a developing organisation. This is not to say that it’s primarily an organisation in the sense of being a bunch of employees in an office (or, in reality, subcontractors in various offices). Rather, it’s primarily a way of organising some of the public’s interaction with the NHS England Board.

It is also useful to ask, “Is the NHS a thing?”, which of course it is, and “What kind of a thing is the NHS, then?” The NHS is a brand, certainly. The current brand dates from 1999 and has its own website.

What else the NHS is, apart from being a brand, is less easy to define. There’s certainly some healthcare element to it. When you go to your GP in England you’re getting a service paid for by NHS England, but when you get a letter from your GP it doesn’t have the NHS brand logo at the top (because the GP or practice, like Public-i, is an independent contractor). Where the NHS begins and ends is hard to say. The best description that I can come up with is that the NHS is a very complex ecosystem of organisations held together by contracts and statute law.

In that sense, therefore, the NHS is much less a well defined thing than NHS Citizen is. It would be truer to say “The NHS is not a thing.” Citizen Brightwell (as it now seems appropriate to call him), says he has:

“…a sense that what I need to do now is work out better how I can be an NHS Citizen.”

But I don’t have that sense. I have the sense that what NHS Citizen needs to do now is work out better how it can be useful to the NHS England Board and to ordinary members of the public who don’t “get it”.

The system

A feature of the organisation of NHS Citizen from early on has been a three stage system of filtration for ideas. The stages, or spaces, are called Discover, Gather and Assembly. Discover, you might think, is where ideas are discovered by the system. But a paper from some time ago muddied the waters with wording that created confusion between Discover and Gather:

“Discovery gathers information and opinions…”

Things have moved on, and prototypes of parts of the system have been created. It seems that Discover will one day, when it is working, provide:

“…an overview of the active and ‘persistent’ conversation on the NHS in England.”

It’s good to see that someone remembered the very important “in England”.

You can submit ideas to the prototype system right now, but not to Discover. You submit them to Gather (even though the prototype web page doesn’t actually say “Gather” at the top). You can also discuss ideas there and vote on them. As I write, there are 58 ideas in Gather.

So the three stages are apparently in the wrong order. It now looks like ideas enter the system in Gather, then after they have been discussed and voted on they go to the Assembly where the Board gets to hear about them, and after that they will have become a persistent part of the conversation on the NHS and appear in Discover. Maybe.

Or maybe Discover is intended to nationalise and standardise local public engagement activity as Tim Kelsey feared. Or maybe what eventually emerges will be something else entirely. It’s a work in progress.

Bugs

Reading through the ideas in the prototype Gather, something bugs me about them. It took me quite a long time to work out what. It’s that they’re pretty much all WIBNIs. WIBNI means “Wouldn’t It Be Nice If”.

Few, if any, of the ideas relate directly to actual problems. This would be OK if the NHS didn’t have any actual problems. Once all the actual problems have been solved, there will be plenty of time and resources for implementing WIBNIs, I suppose.

It’s easy to find a contrasting system where the focus is on actual problems. I’m writing this post in a web browser called Firefox, which is made by the US non-profit foundation Mozilla through a global Internet community. If I find a problem in Firefox, then I, as a member of the public, can report it and track progress towards resolving it, and even contribute to the process of resolution if I have the knowhow. All this happens in a Mozilla product called Bugzilla.

A well-formed bug report in Bugzilla tells what the precise circumstances were when something went wrong, what you would expect to happen if the product were working correctly, and what actually happened. There are a few WIBNIs in there too, but most of the reports that get attention are well-formed in this way.

Some structure of this kind would improve the quality and relevance of the ideas in Gather. What’s happened in Gather is that many contributors have started from an imaginary problem (which may indeed be related to a real problem) and jumped ahead to diagnose it and maybe even propose a solution. It would be better to keep the diagnosis of why something went wrong, and the decision about the best way to fix it, as separate stages of a clearly defined process.

Here’s an example of the NHS going wrong. This really happened. Around this time last year I developed symptoms of a life-threatening cancer. If the NHS had been working correctly, I would have expected my NHS GP to recognise the risk to my life and take urgent action. What actually happened was that my NHS GP diagnosed indigestion and prescribed antacids. (How come I’m still around? I wrote a cheque for £120 to see a private GP who had me in hospital hours after examining me.)

There’s little point in adding this example to Gather, by the way. NHS England already knows about poor cancer survival rates caused by GPs not recognising the symptoms. The media often report on it.

It’s the structure of the story that I think would help NHS Citizen to focus on real issues as opposed to WIBNIs. I’m making no claims about why what happened happened, and I’m not proposing a solution. I’m just saying what the circumstances were, what should have happened, and what actually happened to me.

Information

The very first point that Citizen Brightwell makes is a point about making information accessible:

…a feeling that transparency (something we talk a lot about) is only as good as its visibility accessiblity and consumability. In other words, making what we do more transparent doesn’t mean it’s easier for people to understand or take part in. This is a big challenge…

I think the feeling is mistaken and misleading. Transparency is painful for the NHS. It goes against the traditional culture. The claim that ordinary people wouldn’t understand or be able to take part is just a lazy way of justifying traditions of secrecy.

The strength of the tradition is hard to grasp. When I was being treated in an NHS hospital last year, some of the information in my notes caused confusion amongst staff because it was written in Latin. These were notes written in 2013, in an NHS hospital, with an instinctive and compulsive secrecy that hid the information even from NHS colleagues.

Whenever the matter of transparency comes up, threatening the tradition, it’s more comfortable to change the subject and discuss consumability instead.

In fact there are plenty of people who can do the consumability part without it being centrally planned. I’m one of them. The transparency has to happen first, to give me and people like me something to work with.

For example, I recently (in Eating Disorders Awareness Week) attended a public meeting where there were two presentations about eating disorders. The most serious of the eating disorders is thought to cause premature death in some 20% of cases. But the NHS won’t provide comprehensive information about the extent of these illnesses. The charity B-eat and many other groups and individuals would do the consumability part if only the NHS would come clean about the data. B-eat says:

“There is a lack of data detailing how many people in the UK suffer from an eating disorder… We continue to request that the Department of Health conducts reliable studies to provide us with these vital statistics.”

This is the big challenge: when people try to change the subject to consumability, changing it back again to transparency.

NHS Citizen remains full of potential and full of energy. The time will soon come, it seems to me, for it to start to understand and accept its thingness, its boundaries and its practical purposes, and how it can really help.

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About Rod

Chairman of the Gloucestershire charity Suicide Crisis, Vice Chair of Relate Gloucestershire & Swindon, and an enthusiast for public involvement in the NHS.
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