An NHS Citizen tale

Categoty: NHS citizenWith NHS England’s NHS Citizen project going pretty much dormant until the New Year, now seems like a good time to look at where it’s got to. Here’s a tale that connects some events over the past months in relation to a single topic, so as to illustrate what NHS Citizen has come to.

Following a topic through the NHS Citizen process is very difficult, by design. Each step in the process has certain inputs and certain outputs, and there’s some public access to them and to what goes on, but there’s no tracking mechanism or filter that lets you see just whatever it is you happen to be interested in. You have to do the tracking and filtering yourself. I doubt whether many people can be bothered. I don’t imagine I’ll ever attempt it again.

The real world

One of the early notions in NHS Citizen was that it would somehow connect to real-world discussions of healthcare issues. This remained no more than a notion, as far as I’m aware. But it was an exciting one while it lasted. I thought, “Ooh, I’d like to see NHS Citizen connected to [this] group, and [that] group.”

One of those groups that came to mind was the online community at Mental Health Forum. Getting on for 40,000 people have signed up there:

“We aim to be the friendliest place on the web to discuss mental health issues.”

So, when NHS Citizen relaunched its Gather website in the summer I wondered how a connection with the forum might work. Nothing in Gather suggested that there could be an actual connection between the websites. I therefore put out a feeler in the forum by posting an announcement about Gather. There was one relevant response.

The issue

In Gather, an issue appeared (“issue” being Gatherspeak for “discussion topic”): Comprehensive psychosocial approaches to mental health. The poster logged in as heartofatum (apparently a reference to an ancient Egyptian creation mythology, not that it’s relevant to this tale).

The intention behind the issue was:

“…simply to try & get a discussion going on the alternative approaches/viewpoints to madness/mental health.”

It specifically mentions two broad approaches to psychosis (schizophrenia, mainly): sanctuary and dialogue. It contrasts them with the conventional approach: diagnosis and medication. It also mentions that psychosis can be thought of as having a spiritual dimension.

The first approach, sanctuary, is designed to:

“…provide the necessary and sufficient conditions for a person to go through a psychotic process and come out the other side-‘Weller than well’”

The second approach:

“…puts the mutual vulnerability, openness, imaginal richness, honesty and trust of the therapeutic dialogue, in which patient and therapist confront one another on equal terms and through which both stand to learn and grow.”

This second approach is described particularly in the context of C.G. Jung’s work, although I got the impression that the intention probably wasn’t to promote Jungian analysis in particular, but the general approach.

The spiritual dimension also relates to Jung, whose:

“…personally demanding and soul-centred approach to psychiatry is radically at odds with the detached ‘illusion of expertise’ on which biologic psychiatry’s mask of authority, presumed sanity, and stagnant wasteland of ‘brain chemistry’ dogma are shakily grounded.”

So as I see it, the issue was about the treatment of psychosis using a wide range of methods involving sanctuary, therapeutic dialogue and perhaps Jungian analysis, rather than conventional diagnosis and medication.

When there was no immediate response in Gather, I replied somewhat argumentatively to try and help generate interest.

The discussion

There wasn’t much of a discussion. Just one other person, logging in as doepublic, responded in broad agreement with the issue:

“It is is a rare event in a mental health context to be met where you are, far too often you are expected to be somewhere else before genuine contact, connection and communication takes place.”

A Gather moderator, Michelle, intervened to try and rewrite the topic in terms of more generic buzzwords:

“It feels to me like what this is beginning to explore is a question of ‘what does a more holistic and inclusive approach to mental health look like?'”

When asked what “holistic” means she didn’t respond. No one mentioned holistic or inclusive again after that.

The original poster, heartofatum, put the issue forward to go to the next stage of the NHS Citizen process, and another member of the NHS Citizen team summarized the discussion (which had involved just three people).

The summary didn’t mention sanctuary at all. It replaced that idea with the more generic buzzwords “caring” and “nurturing”. The summary didn’t mention dialogue either. It replaced that idea with “a more equal relationship for patients and their therapists”. It introduced some phrases, for example “modern psychologists”, “sick brain” and “unfriendly environment”, that are nowhere to be found in the discussion. It didn’t mention spirituality other than in quoting the bit about “soul-centred” above.

No one commented on the summary.

The vote

There was a vote by Gather users. At that time 1,458 people had registered on the site, although it’s likely that many of them may have registered and then gone away. 168 people took part in the vote, and the Comprehensive psychosocial approaches to mental health issue got into the top ten, coming 4th.

The top ten issues went forward to a jury, which would choose the top five.

The jury

The jury consisted of 15 people from Stoke-on-Trent and the surrounding area, randomly selected by a market research agency to be broadly representative of the population of England on a bunch of characteristics.

Of course this is nonsense. If the sample was constrained to be “representative” then it wasn’t random. It was selected for people willing to identify as having the required characteristics. Also, the agency didn’t have the power to compel anyone to take part in the jury. The sample was selected for people who were willing and able to serve on a jury for two days.

The jury was provided with an “evidence pack” which repeated the summary from before and didn’t add any evidence. There was a link to the original discussion, however.

What happened in the jury isn’t obvious. There was meant to be a video record, but all that remains is a record of chaotic and, ultimately, failed attempts to make the video record public. It ends with the statement from one of the NHS Citizen team:

“Embedded video is now available here:”

But there’s no link after the word “here”! I can’t find the videos in NHS Citizen’s own video library or on its YouTube channel. After that statement, everyone just gave up.

A summary report about the jury was published, however. It records that the jury was read an anonymous letter (probably from heartofatum) making the case for:

“a more holistic and humane approach to mental health care provision”

The jury thought that mental health is important to lots of people, and it introduced a completely new issue, access:

“It was agreed that the issue of mental health affects people who experience barriers in accessing NHS services.”

There’s no sign that sanctuary, dialogue or spirituality were ever mentioned.

In the final vote, the Comprehensive psychosocial approaches to mental health issue again came 4th out of ten. Thus it was in the top five issues, which all went forward to the next stage, the assembly.

The assembly

Video of the assembly discussion has been published. I haven’t watched it all, as it lasts nearly 5 hours.

Another letter from heartofatum was read out to the assembly. It didn’t clearly state the need for either sanctuary or therapeutic dialogue, although it referenced quite a few Web links. Anyone who follows the links will find information about both sanctuary and therapeutic dialogue, but people participating in the assembly didn’t have the opportunity to do that.

The letter did make points about the spiritual dimension to mental illness, which hadn’t been as obvious when the issue was raised in Gather. The reading of the letter ended half-way through. The second part of the letter wasn’t read out, but for all I know it might have been available to participants in some other way.

The NHS Citizen team claimed to have had great difficulty finding anyone to lead the assembly discussion. Challenged on this, they floundered in the characteristic way that’s become part of the NHS Citizen culture. They said they had asked people, including Rethink, but couldn’t find anyone suitable. Rethink is dedicated to supporting current mainstream approaches, so it’s not very surprising that they didn’t want to lead this discussion. The NHS Citizen team didn’t say they had contacted any of the organisations heartofatum had provided links to in his letter.

According to his letter, heartofatum himself didn’t feel he could attend the assembly and lead the discussion because he suffers from social anxiety disorder. No one at the assembly wanted to acknowledge that this was his reason, though. (Ironically, social anxiety disorder is a completely treatable disorder that the NHS apparently hasn’t bothered to treat, in his case.)

A facilitator structured the assembly discussion in terms of the current situation, the goal for 2020, and next steps on the way to that goal. She didn’t relate the structure to the topic—it was just a general-purpose structure. She summarized the topic in deliberately vague terms:

“Should we be doing more about mental health and what would that look like?”

The topic was introduced by Kevin Mullins, Head of Mental Health at NHS England, and therefore also dedicated to supporting current mainstream approaches. He started off by saying that he agrees with more or less everything heartofatum says, although nothing I heard in his introduction suggests that he had the faintest idea what heartofatum was on about.

Then he said that the problem isn’t that anyone disagrees. The problem is access. NHS England is working on better access to psychosocial approaches. He said that it will only work if we take a holistic approach, which he described as equivalent to personalized care. He said there’s a mental health task force gathering a wide range of views, and it’s taking some time to make sense of all the information.

He set up the discussion with a summary of “what we’re looking at”:

  • better prevention
  • early access
  • joined up mental health, physical health and social care
  • better commissioning (planning, investing and doing)
  • evidence-based treatments

In a confused explanation of evidence-based treatments he said that the NHS had to concentrate on treatments that could be standardized and delivered in the same way throughout the country.

His introduction gradually collapsed as people started to ask questions that changed the subject in various ways. A lot of time was taken up with discussion of IAPT, which mostly doesn’t address psychosis. Other topics were learning disability and autism. I soon gave up trying to follow the incoherent session. Sanctuary, therapeutic dialogue and the spiritual dimension were never mentioned in the parts I listened to.

A set of drawings by “graphic facilitators” illustrates the assembly discussions. The “Mental Health” one shows just how incoherent and irrelevant to the original topic the discussion was:

Mental Health graphic

In the final plenary two people who had taken part in the assembly discussion of the issue summed up. Harry said that lack of communication and integration between services was a real problem for a lot of people, and that the rhetoric about mental health provision didn’t match the experiences of service users. Services, he said, were underfunded, overstretched and culturally incompetent.

He went on to say that to make things change there’s a need for more co-production, more use of voluntary services, parity of esteem with physical health and better joining-up of services.

Deborah, looking to the future, said that in 2020 NHS staff and volunteers should be working in mental health in equal numbers. There’ll be clear signposting and informed choice, a good service for young people and lots of prevention work with children of all ages. Another participant in the discussion supported the idea of working with children, as far as I could make out.

No one who summarized the discussion recalled that sanctuary, dialogue and spirituality in the treatment of psychosis had been at the heart of the original issue.

Simon Stevens, Chief Executive of NHS England, wrapped up the assembly meeting. The only aspect of mental health that he talked about was that it’s underfunded, although stigma got a passing mention. He ended by saying that local discussions, not national events like the assembly, will be “where the rubber hits the road”.

Malcolm Grant, Chairman of the Board of NHS England, praised Board members and made a long-winded excuse on their behalf—to the effect that the NHS is good at curing acute illness but not so good at life-long conditions because it’s an institution:

“Institutions develop cultures, they develop ways of doing things, which are sometimes very difficult to change. The NHS as an institution is great on acute instances of ill-health, and in intervention and using high tech and science. But most of what we’ve heard today is about long-term conditions, and about the ability of an institution to be able to change in order to prevent, to anticipate and to work through a life course with individuals.”

But the mental health issue presented to Gather was precisely that the NHS is terrible at curing acute psychotic illness. Instead of interpreting it as a spiritual crisis that requires sanctuary and dialogue leading to cure, the NHS interprets it as a long-term condition that requires medication and leads only to death. The Malcolm Grant mindset, not institutional culture, is the thing that’s very difficult to change here.

The report

At the time of writing there’s no full report from the assembly, and a formal response from the NHS England Board will take some months.

The summary report on the issue of Comprehensive psychosocial approaches to mental health is oddly different in several ways from the summary presented by Harry and Deborah to the assembly. For example, it explains:

“Psychosocial approaches to mental health take biological, environmental and social factors to be important in determining individuals’ mental health. Unlike more conventional approaches, psychosocial approaches do not focus heavily on the use of medication to treat mental health problems.”

However, it doesn’t mention psychosis or schizophrenia, sanctuary, dialogue or spirituality at all.

Back in the real world

Back in the real world, there are signs here and there in the NHS that understanding is very gradually dawning—an understanding of psychosis as a spiritual crisis that can be cured with sanctuary and dialogue. The Joint Commissioning Panel for Mental Health is promoting sanctuary provision to NHS commissioners. There’s an NHS Open Dialogue Project, and Open Dialogue Approach UK is running a programme of training for NHS teams beginning in April 2016.

At the same time, concerns about the long term use of medication for psychosis are growing. For example, a research paper published just a couple of weeks ago concludes that this practice is not as soundly based in scientific evidence as many in the NHS seem to think it is:

We found the published data to be inadequate…to conclusively evaluate whether long-term antipsychotic medication treatment results in better outcomes on average.

All these ideas remain deeply unfashionable, though. The very idea of a cure is unfashionable in today’s NHS where “recovery” has become a term used in an Orwellian sense to mean enforced long-term mental disability. The NHS Citizen moderator, Michelle, spotted this first when she made her undoubtedly well-meaning attempt to re-jargonize the issue in terms of more fashionable buzzwords. (She is particularly to be congratulated for introducing the buzzword “holistic”, which lasted well in the issue’s passage through the NHS Citizen process, despite—or perhaps because of—no one quite being able to say what it means.)

Not just this one moderator, but the whole NHS Citizen process from Gather to Assembly is, in practice, a process that rejects diversity of viewpoints at every stage, a kind of beauty pageant for ageing NHS memes where the NHS England Board’s own past ideas are paraded for the official re-approval of the same Board members who first approved them—ideas like access, choice, signposting, prevention and the rest.

And yet, and yet, there are signs here and there in the NHS that understanding is very gradually dawning. So it turns out that NHS Citizen’s social and political role in shaping the progress of the NHS is, in effect, to embody resistance to change, to be a kind of reactionary breakwater absorbing the energies of those people who are passionately against the future, the people who just want to go on and on saying the same things they said in the past. It achieves this by making these people sit around endlessly and pointlessly talking at each other, while elsewhere, and almost unnoticed, real change is very gradually happening.

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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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One Response to An NHS Citizen tale

  1. markgamsu says:

    Good piece Rod – I like the way you have taken us through the NHS Citizen process here. I think that some of the concerns you describe are similar to those in my blog (http://localdemocracyandhealth.com/2015/10/25/can-i-eat-that-lettuce-voice-digital-public-health-england-and-nhs-citizen/) in October.

    Fundamentally I think that although well intentioned NHS Citizen has tried to bring a managerial rationalist approach to engagement which has actually bureaucratised the process. As you conclude real engagement with all of its creativity, irrationality, unpredictability is happening at a local level. Unfortunately I think NHSE with its focus on the NHS Citizen Flagship has given insufficient attention to the relationships its has with local people and places through its mainstream delivery structures.

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