Tuesday, March 19, 2013

Mystery surrounds appointment of NHS Clinical Reference Group chair

NHSmag

Mystery surrounds the appointment of a virtually unknown gender clinic specialist to chair a crucial new advisory group in the NHS.

The decision, recently made public on the NHS CB's web site, appears to pass over senior clinicians whose expertise and track record are far better known to patient stakeholders.

I'm keen to hear from anyone who can shed light on this, as the appointment seems strange in the circumstances.

Clinical Reference Groups

The NHS Commissioning Board has been recruiting volunteers to sit on and chair new bodies called Clinical Reference Groups over the last few months.

These new groups are integral to the design and planning of specialised services, which include all NHS-funded Gender Identity treatments.

I explained how specialised commissioning will work in the new NHS structure in a previous article.

The process to populate these groups has been advertised openly, and would have been seen by the clinical leads and staff of all the existing gender clinics in the UK.

Breadth and depth of experience

Several names would come to mind as clinicians with the breadth and depth of experience to either chair or populate such a committee, which will influence the future evolution of how services are commissioned and the protocols by which they work.

Experience of patient diversity is essential, so one school of thought is that you might pick a chair from one of the larger established gender clinics, seeing hundreds of patients a year drawn from a wide national catchment.

There is one particularly obvious candidate from that point of view.

Experience of policy development is essential too, so another school of thought is that you might pick a clinician with a record of leading on the development of best practice guidelines.

For instance, Dr Walter Bouman (Nottingham) and Professor Kevan Wylie (Sheffield) are both clinical leads of substantial established Gender Identity Clinics in England. Both attended a recent conference with me in San Francisco, developing a global consensus among specialist clinicians for revising medical classification. The latter has also chaired an inter-collegiate committee developing UK treatment guidelines.

You would think that clinicians from these three centres would be the leading contenders to go on and chair any committee advising the NHS Commissioning Board.

Strange choice

The NHS Commissioning Board has now announced the appointments of many of the first CRG chairs, however.

And the selection of a chair to lead on gender identity services is a bit of an outlier.

JohnDeanClip

Now, this is a field that I have been working in for over 20 years. I sat on the Parliamentary Forum on Transsexualism for 13 years. I chaired the first working group set up by the Department of Health to develop educational resources. I wrote the Department's official policy guide. I am the UK's external advisor to the World Professional Association for Transgender Health. And I've sat on more committees and spoken at more policy events than I can honestly remember.

And in all that experience I have never encountered the name, let alone the presence, of John Dean.

Some background

Some digging reveals that Dr John Dean is the lead clinician for a service called The Laurels in Exeter. The clinic doesn't appear to have a web site of its own; however this site by Gay Youth UK provides some details.

Some more digging reveals a biography here, which explains that he is "Clinical Director for Gender and Sexual Medicine for Devon Partnership NHS Trust".

That would be handy, of course, as the Chief Executive for the neighbouring South Devon Healthcare NHS Foundation Trust  is none other than Paula Vasco-Knight, the National Lead for Equality at the NHS Commissioning Board.

Since many equality concerns have been raised around the design, conduct and access to gender identity services over the years, the Commissioning Board's head Champion for Equality is almost certainly likely to know the new Chair of the Clinical Reference Group already.

New broom vs competency

There is an argument, of course, that the governance of policy development in this area might need a clean pair of hands, untainted by all the previous history and enmities.

Gender clinicians in the UK really aren't a model of happy families. In particular, politically, they seem to have divided into "Charing Cross and the rest".

The unifying factor for "the rest" is that, even when their case loads are all added together, they are still only a fraction of the size of the Charing Cross behemoth. You can readily appreciate where they might find common purpose.

However, I look at this from the perspective of a lay expert who has watched the painful evolution of policy for many years. I am a critical friend. I have not been sparing in criticism of what was bad. Equally, I've been generous in helping anyone and everyone who wants to do it better.

For that reason, I would feel rather more reassured if one of the existing experienced players were chairing this Clinical Reference Group and the rest were around the table.

Surely depth and breadth of clinical expertise matters? I would be particularly worried if it turns out that any of those experts are excluded (though the panel memberships haven't been published yet).

To me, regardless of how wonderful he might be in his own small clinical fiefdom, the newly appointed Chair of the Clinical Reference Group for gender identity, is a virtual unknown. And that is a matter of concern. It's akin to putting the head of a tiny cottage hospital in Devon at the head of the cardiology CRG.

Case open

This is why I'm concerned to understand more about this appointment … the logic for how Dean was chosen … where he claims expertise, given his noted absence from anything I've been involved with all these years … and who he is including (and excluding) from the group he will lead.

In my previous blog about gender identity service commissioning I was cautiously optimistic that the new system could actually improve experiences for English trans patients.

That may still be the case. Dr John Dean could turn out to be an inspired choice for chair, sweeping away the past and acting as a new broom. When an unknown gets appointed over the heads of so many more experienced and networked clinicians, however, you are bound to wonder...

16 comments:

Anonymous said...

Oh gods no...... I've heard the stories of Dr Dean.
Not following Wpath at all. Trying to remove treatment from complainants about his treatment. Delaying Hormone treatment as much as possible. "Forgetting" repeatedly to apply to PCT for funding for surgery and hormones.

He'll turn everything back as far as possible, he's the worst type of practioner, he really doesn't like dealing with Trans*/GD at all.

They must have really had to look for him as he's been allowed to run his own fifedom in Exeter pretty much without opposition to what he feels like doing at the time.

Catherine Butler said...

I'm one of Dr Dean's patients at Exeter, and that's not been my experience at all. He's been happy to have me on hormones from the start (I'd already been prescribed them privately, but I was only a couple of months into real-life experience then); arranged several weeks of NHS speech therapy in Bristol (and I could have had more); and seems to have no qualms about my going on to surgery as soon as my two years' RLE have elapsed, should I wish it.

I realise that I'm only one data point, and that I'm probably an unproblematic case in many ways: no other health problems, emotionally and financially stable, etc. But as far as my limited experience goes, Dr Dean is okay. I've no idea about his wider views on strategic policy or how energetic he might be as the chair of this group, but my clinical experience so far has been good.

Joanne Yeuxbleus said...

I'm a patient at The Laurels, and I've had no problems as yet apart from the usual gatekeeping and gender stereotype issues. I have heard a few complaints though, and some people are gatekept indefinitely for hormones if they're "gender non-conforming". I don't know if that's different at other clinics?

Jenna Powell said...

I'm another Laurels patient under Dr Dean.
I've been at the Laurels nearly 2 years and all I can say about Dr Dean is that he's a very caring person and if he doesn't like dealing with Trans*/GD then he's very good at hiding it.
I see him every 3 months for a review of where I am and he listens to what I have to say and responds knowledgeably.
As soon as I'd been at the Laurels for 6 months I was asked if I was ready to start hormones. I honestly wasn't expecting to be asked that at that point and so agreed to read the literature about the pros and cons then decided. By the time I'd expected to have that conversation with Dr Dean I had actually started on hormones.
As for surgery Dr Dean has asked me when I was contemplating it and when I told him and the reasons why he was fine with it, no pressure to have surgery as soon as I'd be eligible but understanding that it had to fit to my situation and timescales.
Finally, last year my PCT was dragging their heels over funding some of my treatment. Dr Dean certainly didn't delay things and contacted them and it was all sorted out within a couple of weeks, just in time for Christmas in fact.

Michael said...

I was a patient under Dr Dean at the Laurels - he okayed top surgery at the 3 month mark (WPATH guidelines) and rushed my top surgery through with a referral at exactly the 1 year mark with the Laurels (meaning I had top surgery at 1 year and 3 months with the clinic). He seemed like a very caring person, very patient choice driven, and extremely frustrated with PCT and waiting times. I think this may be a good thing, but time will tell.

Anonymous said...

I've also had no problems with Dr. Dean and I've been his patient for about 2.5 yrs.
I have no idea what kind of chair he'll make, but he certainly doesn't seem anti trans people or anything like that.
At my first meeting with him he patiently explained everything I could expect from him and the clinic in Exeter, and I specifically remember that he made me feel entitled to my treatment, and that I could decide what I wanted that to be.
When I requested to go on testogel rather than their standard nebido, he had no problems granting my wish.
Overall the Laurels are a lovely clinic to deal with. Though I appreciate your concerns if he has not been present at meetings / conferences you'd expect, but it doesn't necessarily follow that those who live outside of major cities don't know what they're talking about...

Christine Burns said...

Thanks to everyone for such great feedback. Keep it coming. It's good to hear up-to-date reports from people actually using a service and acquainted with the people involved.

Of course, the point of the blog wasn't to cast any doubt on Dr Dean's capabilities. That seems to have come from a single comment and the remaining comments go the other way.

However, I remain curious as to the criteria for selecting him to chair the Clinical Reference Group. Great as he sounds) he is not perhaps the most obvious choice. That is not to say that new blood is bad; just that it's an interesting choice.

Anne Carter said...

Dear Just Plain Sense,
I have been working on NHS111 the new call Services but I would like to saiy that all understand Transgender and Intersex probale we have after GRS.
As someone that as seen the Commissioning Policy for GD Services the Suicide will go up after looking at 2012 to 2013 of 47 it looks like it be bigger this year.
Anne (SWTIG)

Christine Burns said...

Dear Anne

I'm interested by your comments. Where does this statistic you quote come from and what part of the commissioning policy do you feel concerned about?

- Christine

James Morton said...

I find the claim of 47 suicides a year rather strange as when we were researching trans mental health we could not find any published statistics for actual numbers of trans suicides (only for suicide attempts). Gender Reassignment status has not usually been a criteria recorded against suicides nor generally examined by suicide researchers so, like Christine, I'm curious where the previous poster got this figure from.

Jay McNeil said...

Having published the Trans Mental Health Study with James Morton and others, I have to say that this seems highly unlikely. When we ran this study we found no such references after an extensive search for data. In fact our findings showed the opposite to be true - that denying transition to those who needed it was related to depression, self-harm and suicide attempts. To see the study report please go to http://www.scottishtrans.org/Article.aspx?id=98

James Morton said...

Maeve Regan's just written an excellent summary for Pink News about the Trans Mental Health Study's findings on trans suicide attempts: http://www.pinknews.co.uk/2013/03/22/analysis-trans-suicide-and-the-way-the-media-reports-the-trans-community/

Christine Burns said...

Thank you for posting that link James.

I'm going to repost it here in clickable form to make it easier for people to access.

http://www.pinknews.co.uk/2013/03/22/analysis-trans-suicide-and-the-way-the-media-reports-the-trans-community/

Krissie said...

If I recall correctly, the NHS is currently performing around 250 gender reconstructive surgeries a year - given a figure of around 153 in 2010, that's possibly a generous estimate.

Of those studies that have been done, in the uk there's a 98% satisfaction rate with gender surgery, which is a profoundly high success rate for any medical treatment (Schonfield, S. (2008) Audit, Information and Analysis Unit: audit of patient satisfaction with transgender services.)

At current levels of service provision, that would imply around 5 unsatisfied people per year... some of whom will be unsatisfied for reasons other than having had the surgery at all.

However, assuming that every single one of those unsatisfied people were suicidal - which is a highly unlikely scenario, to reach a total of 47 people suicidal owing to having had gender surgery would take a whole 9 years, assuming that for those 9 years, 250 people had been treated - they haven't. Indeed, in 2000, there were only around 54 such treatments on the NHS.

Essentially, it is utterly impossible to reasonably claim that 47 people a year have been calling NHS helplines due to feeling suicidal following surgery, even if you included every single person unsatisfied with their surgical outcome to date. Such a statistic can only be a nonsense delivered by somebody with an axe to grind for one reason or another.

Womandrogyne said...

I know this is off-topic, but since it's been raised here in the comments, I'd like to go on record as saying that Dr Dean (and The Laurels as a whole) is very supportive of people presenting as non-binary or non-gender-stereotypical. I was talking with him about this last month (since I've recently set up a peer support group for non-binary folk in the South West) and he acknowledged that it's been a learning experience for them as people like us began to show up, but he has 8 clients he sees at the moment who identify as non-binary (and he's not the only clinician at The Laurels), and the clinic as a whole is very progressive in its treatment of diverse trans people. I myself have had a very smooth journey through there in spite of identifying as non-binary, and have had no problem being recommended for hormones or GRS.
I know 3 other non-binary people who are having similar very positive experiences there. In fact, people are literally migrating from London in order to escape the Victorian clutches of Charing X, where they are told they don't even exist. After 2 years of contact with Dr Dean, I'm personally very happy to see him involved on a national level with these issues, since he has a very progressive viewpoint on gender identity, dysphoria, and transition, and I think trans people around the country will benefit from his input.

Christine Burns said...

Thanks for that comment Womandrogyne and I don't think it is off-topic at all. It is very helpful and adds to comments above which I also acknowledged. I think it is really valuable if the conversation about how to organise care is informed by the needs of everyone who can benefit from the services and not just the 20% of patients who end up on the traditional transsexual trajectory. The fact that services used to be oriented and defined in terms of that goal meant that, increasingly, they were not designed to serve the majority of people seeking help.