Friday, May 31, 2013

Clinicians in Angry Revolt


News is reaching me this week of a mini revolt among clinicians over a recent policy decision concerning gender identity services in England.

And the clinicians involved  are so worked up that some say they doubt the competence of the chair-designate of their speciality's Clinical Reference Group, Dr John Dean, to safeguard their views.

The spat involves the sudden decision "at the highest level" to shelve collaborative work that had been in progress for over a year to develop unified commissioning and clinical protocols for both the medical and surgical services involved in gender identity treatment in England.


Instead of ratifying those extensively consulted plans, NHS England will temporarily implement an edited version of the policies and protocols used by the NHS in Scotland. The plan is then for the Clinical Reference Group (CRG), under John Dean, to develop policies for England which address the equality concerns raised.

Some clinicians in England voice concerns that this decision could lead to them being required to work in ways which go against their clinical judgement and which they feel may not be safe.

And the clinicians' anger with John Dean relates to allegations that, by putting his signature to this arrangement, he has compromised his role as the CRG's chair-designate.

Controversial appointment

Eyebrows were raised back in March when Dr Dean was appointed to lead the Gender Identity Services CRG.

As I reported at the time, Dr Dean appears as a new face to many. Patient comments under my previous report indicate that he is popular with some of the users of his own clinic. As a GP, Dr Dean is also better known in other clinical circles, especially sexual medicine. However, he is not a figure who has been part of historical discussions around policy in this area, nationally or internationally.

A fresh face is not necessarily a bad thing. Progress to modernise gender identity treatment in England has been dogged for years by decades-old enmities which have lapsed into traditions of who wouldn't speak to whom. Dr Dean has also now become a member of the Parliamentary Forum on Gender Identity, which brings him closer to some of the national stakeholder conversation.

The fact that an inter-collegiate committee set up in 2002 has taken more than a decade to produce best practice national treatment guidelines because of a standoff between clinicians and stakeholders is a strong indication of a need for change.

On the other hand, change of a kind that brings all sides forwards in a field like this requires exceptional qualities of diplomacy, backed by good understanding of the political history and why the differences exist. In this respect the new appointee looks as though he may have stumbled at the first hurdle.

The big question will be how he recovers from this and whether he can succeed in unifying rival interests whose conflicting beliefs have dogged progress for years.

However, there is the even greater question of whether any alternate figure would be any more acceptable to everyone. Chairing this kind of rats nest is not a mission for the faint-hearted.

Policy development

NHS policies in an area such as this fall into two main categories.

There are commissioning policies (and their associated service specifications) which are used to express the rationale for why the NHS needs to provide a particular kind of service, the circumstances when patients would qualify to be referred, what the outcome goals of the treatment should be, and what the service should and should not cover. This is the basis on which clinical organisations are invited to contract to provide the specified service. It is also the basis for calculating the amount of provision to be budgetted each year, based on agreed standard 'tariffs' for the specified interventions.

Work on developing a national standard commissioning policy and service specifications for England had been centred around the combination of documents which I myself helped the Yorkshire and Humberside Specialist Commissioning Group to develop several years ago, plus a derivative of that policy, developed by NHS East Midlands. The differences between the two mainly concerned the specifics of which surgical interventions the two NHS regions had been prepared to fund. The consultation to develop the offspring policy from these two parents had been led by commissioners from the NHS South East region, and the consultative process involving stakeholders had been productive as far as I can see.

There are also policies which clinicians need to agree among themselves for what is good practice to deliver the care required. Traditionally in the UK this has been far less standardised.

Clinicians will all claim to follow (broadly) the international guidance published by the World Professional Association for Transgender Health (WPATH). However, in practice, those clinicians also reserve the right to deviate from the guidelines on the basis of their clinical judgement. The seventh and most recent version of the WPATH guidelines was released in September 2011, with significant changes to recommended protocols. Nevertheless, extant practice has lagged behind, as clinicians are conservative about change.

The forthcoming guidelines from the UK professional colleges, which were completed last autumn, are also expected to be published soon. These intercollegiate guidelines are said to reflect the new WPATH advice, and I gather that even the more traditionally conservative gender clinicians had signed them off. Indeed, the last 12-18 months have seen clinicians talking to each other more, and agreeing a stronger consensus than ever before on how gender identity treatment should be conducted. Many of the old differences of opinion appeared to have been set aside.

With all this history of increased consensus and successful consultation it seems mystifying, therefore, why things have taken such a strange and sudden turn.

Enter the bosses

What appears to have happened in the last few weeks is that either the Department of Health or NHS England (it's not clear which) has taken fright.

The new policies were put out to wider public consultation in January 2013 through the NHS Commissioning Board's web site. (This was the former name for what is now NHS England). The gender identity policies were not the only specialised commissioning plans to be opened to wider consultation at this time. This was a wide consultation process involving many specialised areas which were to become the responsibility of NHS England.

Sources tell me that more than 80% of the responses received in the consultation process related to the gender identity policies … the comments coming from both individual trans stakeholders, activist groups and clinics. Some of the responses threatened legal challenges in areas that have long been bones of contention. I'm told that the Department took legal advice on some of the points raised and, as a result, took the decision to shelve the whole set of policies and institute a contingency approach. The Department says it is all NHS England's responsibility.

This is the point where it looks as though John Dean may have been put into a compromised position.

Sources advise me that Dr Dean was invited to attend the offices of the Department of Health, shown the proposed plan, and requested to sign up to it there and then. Again it is unclear whether the instruction came from the Department or NHS England.

The controversy surrounds whether, in signing up to the plan, he may have compromised some of his peers in the way they allege.

Concerns raised

Concerns about what had and hadn't occurred first surfaced 10 days ago, on 20th May. The following is indicative of the confusion:

Dear John,
I am hearing rumours left right and centre about the Scottish Protocol. Can you please clarify what is happening. As a member of the GRG I feel at a loss I have heard nothing about when we are meeting let alone which protocol we are adopting. It’s disconcerting when I have patients in my clinic telling me that soon they will be able to self refer to my service and I don’t have any idea what is going on.
Can you confirm
1) Is the committee quorate
2) When the committee is meeting
3) Where the decision about the Scottish Protocol originates
4) Does the CRG have any role as the decision about what is clinically most appropriate seems to have been taken completely out of the hands of the clinicians charged with advising on what is bests for the NHS patients in England

John Dean's response is to first explain the delays in setting up the Clinical Reference Group:

The CRG has not yet been convened and cannot start its work until the PPE (patient and carer) representatives have been appointed, which should be within the next couple of weeks. As soon as we have a full compliment of members, I will send around a circular to check everyone's availability, so that we can have as many attending as possible. I am very keen that our first meeting is face-to-face. I hope that it will be in late June and in London, after the 18th June meeting with stakeholders arranged by Steve Field

Steve Field is the deputy medical director for NHS England and also the joint director-level head of NHS England's Equality and Health Inequalities team. The Jun 18th meeting referred to here is a completely separate stakeholder meeting organised by his equality team.

John Dean continues:

The implications of the rejection of the English Service Specification (ESS Mark I) developed by last year's CRG have become apparent to NHS England since 1st April. The reason for the rejection, as I understand it, was that the response to the public consultation on ESS Mark 1 was so hostile, and raised so many other issues of concern with respect to the interaction between trans-people and the NHS (and other government services), that legal advice was requested at the highest level; after receiving that advice, the outcome was that ESS Mark 1 was not approved and NHS England was told that new version must be developed, with more input from service users. The seven English GICs were initially asked to carry on exactly as we had before that date, until the new CRG developed a new Service Specification. Clearly, the rather tortuous appointment process needs to be completed before the CRG could do this but I hope that the new CRG will start work in the next 4-6 weeks and develop a new English Service Specification (ESS Mark 2).

He adds:

The decision to suggest the temporary adoption of a modified version of the Scottish Service Specification (SSS) for use by the English GICs has come from within NHS England. It was considered necessary to try and adopt a uniform policy across the whole of England, so that patients could be assured equity of access, rather than a postcode lottery. I was informed about it a couple of weeks ago and was asked to sign a letter to all English GICs in my personal capacity as CRG Chair, not on behalf of the CRG. I was asked to keep the matter confidential until the letter was sent out.

The distinction between the chair of a committee having a "personal capacity" distinct from acting on behalf of the committee's members appears to have been one of the things that has annoyed some of the clinicians. Responding to the concerns already expressed, he explains:

We have been asked to submit our views about using the SSS in England on a temporary basis. I note that we have been asked to respond with our comments by 26th May. In my personal view, because of the delay in sending out the letter, this is an unacceptably short consultation period and I will make representations about that now, with a view to having extended, so that we have adequate time to consider the implications and respond accordingly. Although I haven't got to the relevant e-mails yet, I am aware of the strength of feeling about this. I do not think for a moment that NHS England intends to impose a Service Specification from 1st June that the clinicians working in English GICs believe to be unsafe or unworkable.

That was written on 24th May. Since then, some practitioners have expressed concerns about the expectations created by a letter having been sent to stakeholders, explaining the adoption of the Scottish Service Specification with effect from 1st June. Their concern was that, in spite of John Dean's assurances about clinicians having the opportunity to comment on the Scottish specification, it was already (in effect) a done deal. One surgeon wrote:

My understanding is that there was pressure to adopt this based on one or more of the patient representative groups having spoken directly to Ministers. If we are not careful, we could find ourselves being pushed into policy which is neither sensible, fair, nor achieveable. If there is to be a discussion regarding access to, among other things, the surgical service, I think that service should be represented.

This and other challenges pushed John Dean to defend himself more robustly in this letter of 30th May:

I am writing to you all to clarify my role as CRG Chair, and in recent developments.

I want to make it absolutely clear that I have not agreed a new Service Specification "on behalf of the English clinics"; I do not have the authority to do so. Furthermore, I do not represent the English clinics in my role as CRG Chair; my role is solely as an adviser to NHS England. The advice that I give them is my own; I am not mandated by anyone to give advice but am very happy to listen to everyone's views when formulating my advice. Very importantly, everyone is welcome to disagree with my advice and make their personal representations to NHS England.

NHS England, who commission our services, decided that, having taken legal advice, they would not accept the Service Specification that the CRG developed last year; in my personal view, this is a good document and I am disappointed that it was not accepted. They want a new Service Specification developed that addresses their legal concerns, which are mainly around equality issues, and have appointed the new CRG to develop this. The full 25-member CRG has a blank canvas to work from. Personally, I think that the Service Specification developed by last year's CRG and the UK Guidelines for Gender Dysphoria would be an excellent starting point. The requirements of NHS England and the wishes of service users, much of which will come from the service user stakeholder meeting on 18th June, will also need to be part of this process.

And, to clarify further:

The NHS Board had already decided for itself, and not on my advice, that they wanted English clinics to deliver [Gender Identity Services] in accordance with the existing Scottish Service Specification, until such a time that they approve a definitive new Service Specification for England. This is the service that they want to commission, and not the varied services that we currently deliver. They undoubtedly have a right to do this, and each provider clinic has a right to decide whether or not they want to deliver this. However, it is clearly better that we agree with them an interim Service Specification that will be acceptable to all parties. It should be possible to thrash this out in a one-day meeting of clinicians representing each clinic and representatives of NHS England. [..] NHS England will require us to deliver the services defined in an interim Service Specification from 1st July 2013; it will need to be workable within existing resources and staffing, and the meeting on 21st June is the opportunity for those working in the English clinics to influence what it contains. I must again emphasise that this is an interim measure, intended to be in place for a few months until a definitive new Service Specification is approved by NHS England; this new document will be the work of the CRG over the coming months.


Whether this is sufficient to address the clinicians' concerns remains to be seen. However, you can sympathise with the position which John Dean has been put into by either or both of the Department of Health and NHS England taking a panic decision, requiring him to put his name to it, and then leaving him to take the inevitable flak.

Clearly there is a timing problem. Had the NHS not been completely reorganised at the end of March the normal process would have been for the previous consultative group to act on the public feedback and legal concerns and then introduce a complete and sound policy when it was ready.

Instead, forced to have some sort of policy, the leadership have grabbed for a life belt in a state of panic and introduced a service specification that had never been part of any of the consultations to date, putting everyone's noses out of joint in the process. As well as the clinical eyebrows which are raised, this has the potential for all manner of unforeseen consequences.

The question is whether John Dean should have accepted the imposition of this approach and what unfortunate signals it sends about the authority of his chairmanship in the future.

A chair needs to exert leadership over their committee. But, in order to command the necessary respect, committee members expect certain qualities of their chair … who will have to represent and defend their views in the future (even if he believes he is not required to represent their interests now).

The Gender Identity Services Clinical Reference Group has not started well. The issue has laid bare the fault lines which still exist among clinicians who are being pushed towards changes in how they work. The whole incident stands as a reminder that change in this field requires consensus … and cooperation … at every point.

Let us hope that it recovers.


HenryHall said...

There is quite obviously a truly huge disconnect and failure to communicate between the NHS lawyers and the NHS medics. The gap appears to be widening, not narrowing.

How did this come about and why is it unique to this particular part of the NHS?

Christine Burns MBE said...

Dear Henry

I don't think it's a disconnect between lawyers and medics. The law only belatedly follows far more fundamental social trends. The disconnect is between this area of medicine (which has been left to do its own thing in a corner for decades) and the direction of mainstream discourse in health.

Gender Identity Services (GIS) have resided until now within Mental Health (although the international currents are promising to take it elsewhere).

Mental Health is itself generally behind the rest of medicine. In other areas we talk continually about patient choice and autonomy, whereas mental health professionals historically regarded those as somehow not applying. In fairness that is changing.

This is not to say that stakeholders didn't have a say, but practitioners often took the paternalist view that they knew best on any area where they felt uncomfortable with change.

I've purposely used the past tense in order to acknowledge that a lot has changed and is changing, in a relatively short space of time. These days I find that senior practitioners and I are more often than not on the same page and there is a will to change things.

This particular case is not about clinicians though. The debacle is an administratively inspired one ... and I sympathise with the clinicians feeling frustrated. This is a case of administrators going over the heads of everyone who put so much effort into a consensual policy development and imposing something for short term expedience.

HenryHall said...

Isn't it more a case of imposing something for urgent legal necessity rather than imposing something for short term expedience?

So the question becomes - why were the legal ramifications not tackled much sooner?

Good NHS medicine is highly desirable, but legal NHS medicine is absolutely necessary. In the words of Aengus Ó Snodaigh the situation is as bizarre as it is offensive.

Christine Burns MBE said...

Good points. In answer, people have of course challenged aspects of policy in the past. The case of A.D.&G. vs NW Lancs Health Authority in 1998/9 established the precedent by which trans people were able to press their right to treatment on the NHS.

That case was a challenge to commissioning policy. It was harder for anyone to press any case on aspects of clinical protocols as the law doesn't tend to interfere in aspects of what are regarded as clinical judgement.

Until now, challenges on detailed aspects of commissioning policy have never got as far as the courts. Examples would be where a service specification dictates that the service should operate in a certain way ... without advancing clinical evidence for the rationale. Part of the effect of A.D.&G. was to encourage commissioners to settle on the steps of the court ... thus avoiding any kind of precedent setting which could be applied to the policy of neighbouring commissioners. This has produced results for individuals but stopped the law from forcing wider progress.

The reason why a legal challenge would matter now is because there is a single national commissioner. Whether they settle out of court or lose inside of it any case would therefore be much more effective in future.

Hopefully this explains why the law had not had more of an effect than appears over the last 15 years.

HenryHall said...

Thank you. You explained it clearly.

Anonymous said...

Clear as mud.

After a recent appointment, I've noticed a marked difference in treatment between feigning ignorance of the guidelines and admitting you've read them. Mentioning this blog post was like a red rag to a bull.

Notts GIC are in active ignorance of changes, ie. they know about the upcoming changes and know about surgery delays. But are refusing to be proactive about any of them.

2nd referrals are still going to be done at 2 years. And surgery won't be applied for until after that. Knowing there is a 6-8 month delay at present that is about to get a lot longer they are choosing to see how long they can deny following any guidelines (SoC, Scottish, interim).
I can see another AD&G style case happening to force the NHS to be more proactive when there are known delays down the treatment pathways. said...

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