Guidance on Gender Identity Treatment from the NHS Chief Executive

As explained in the previous Blog post, the issue of how some NHS Primary Care Trusts (PCTs) address the need for gender identity services has been an issue for many years. In fact, it is ten years ago this month that the Court of Appeal upheld a key case brought by four Lancashire trans women against their local NHS.

The case, "A.D.& G vs North West Lancashire Health Authority" established important case law. The appeal judges agreed with an earlier High Court ruling that

• Gender Reassignment treatment was an appropriate treatment for clinicians to consider recommending;
  
• that therefore the NHS had to fund this like any other legitimate treatment; and that
  
• it was unlawful for Health Service managers to operate any kind of policy that amounts to a blanket ban.
  

Managers have the right to set expenditure priorities, but patient needs must always be considered on their individual merits and the law must be obeyed.

The previous Blog explains how this has still not happened in some cases, and the way that I've pursued this as an issue, in conjunction with Dr Lynne Jones MP (Chair of the Parliamentary Forum on Gender Identity) and the Equality and Human Rights Commission.

Last week the Secretary of State for Health responded to a written Parliamentary Question from Lynne on the continuing post code lottery that patients face, depending on where they live. This was part of an all round strategy to encourage an official line to be taken.

Yesterday, I also received a long and detailed letter from one of the Department of Health's civil servants responsible for Equality matters. I don't propose to reproduce the whole letter, but he says:

...As you know, PCTs are autonomous bodies, responsible for ensuring their own compliance with all relevant legislation, including equality and human rights legislation. They are performance-managed by SHAs, and this performance management role includes PCTs' equality and human rights compliance. It is not therefore the role of DH to intervene in the day to day management of PCTs. DH is fully committed to the equality agenda, however, and takes steps to disseminate knowledge and helpful material to NHS bodies where appropriate, encouraging them to promote equality beyond solely the strict requirements of the law. Our series of equality guides to the NHS are a good example of this, not least "Trans - a practical guide to the NHS" which does, of course, include information and suggestions on commissioning, explaining how the needs of trans people should be taken into account.

We do not accept that DH is required to take any further action at this stage in order to comply with our statutory obligations. We are however always keen to promote the equality agenda, and take stakeholders' concerns seriously. We note the serious concerns that you, and the Parliamentary Forum have raised about the availability of gender identity services in particular areas. Consequently, David Nicholson, NHS Chief Executive, has agreed that the Department should write out to all NHS Chief Executives and their teams, via the weekly NHS Leadership Team bulletin this week, to reiterate the importance of this issue. It will be issued this Thursday 24 September and will consist of the following:

Gender Identity Services

Concerns have been raised over the difficulty that some people experiencing gender dysphoria are encountering in obtaining gender reassignment treatment, with the allegation that some PCTS are effectively operating "blanket bans" on funding such treatment. Please be aware that any such blanket approach is unlawful. Each case must be considered individually, according to clinical need and local prioritisation. Further guidance is available on the DH website and in the Specialised Service Definition (No. 22 - Mental Health Services).

Links:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_089941

http://www.specialisedcommissioning.nhs.uk/index.php/key-documents/nationally-commissioned-specialised-services/?dl_page=2

Action: NHS chief executives should ensure that they are not operating "blanket bans" in relation to gender reassignment treatment.

Personally I am sceptical that this action is all that is required. I don't think it's a magic wand. PCTs who are causing concern have a rather more sophisticated approach than simply saying, "We don't provide this". Therefore some could continue to claim they are complying with the law anyway.

The usual approach by such PCTs is to have a policy that ranks assessment and support for gender identity issues as low priority, funded by exception, and to operate Exceptional Case review procedures in a manner which simply fail to admit any case as being such an exception.

This kind of smoke and mirrors has therefore had to be approached by patients being prepared to take their PCT to court. Such PCTs then settle at the last moment, ensuring that there is no resultant case law which could fetter their approach to the next patient in line. This is why the situation has persisted for a full ten years since it was supposedly outlawed.

For these reasons I've written back to the Department of Health and, whilst welcoming this advance, I've recommended a series of actions that they could and should be taking, through the Strategic Health Authorities, as a way of reinforcing the spirit as well as the letter of David Nicholson's message. SHA's are responsible for performance managing PCTs, as DH themselves point out.

In the first instance, however, we all need to see what happens as a result of David Nicholson's direct policy statement. Chief Executives of NHS Trusts know that he's not a man to trifle with.

And maybe this will be the nudge that was required, prompting a more honest and equitable approach. If it isn't however, then I'm ready for the next step .. and the Equality and Human Rights Commission are watching closely too.

Parliamentary Answer on access to Gender Identity Services

During the summer months there has been quite a lot of behind the scenes activity going on regarding the inconsistent levels of NHS provision for people with gender identity issues.

I had already been working for some time this year with the specialist commissioning group in Yorkshire and Humberside region. That work has led to commissioners for that region developing what we believe to be the best policy and service specification to date.

By coordinating consultation with representatives of the Gender Trust, Press for Change and Charing Cross Gender Identity Clinic, and by carefully educating the commissioning team, we've arrived at something that, whilst not perfect, represents a significant advance on any previous policy.

The policy and service specification has now been approved by the full regional Specialist Commissioning Group (SCG) and is expected to be ratified by Yorkshire and Humberside's 14 Primary Care Trusts (PCTs) in October. That will mean that treatment and funding policy in the Yorkshire and Humberside Region will be consistent.

With a best practice approach to refer to, I've also been having a similar kind of discussions with the commissioner responsible for the same policies in the North West – although that work still has some way to go. The goal is to gradually infuse better practice, one region at a time.

Ten Years

Yet this also takes place against a setting where we know that many PCTs are still operating policies that amount to a blanket ban on treatments. This is ten years after the Court of Appeal upheld an earlier high court decision (A.D.&G vs NW Lancs Health Authority) which said such behaviour was unlawful.

The PCTs that do this are never so obvious as to say that they are banning treatment of course. No. What they do is to set policies which say they'll not routinely fund treatments, but that people can apply for special consideration under the Trust's "Exceptional Cases" procedure.

Such PCTs can seldom define what would constitute an exceptional requirement though, and in practice some have never made such an exception. When challenged on this by patients prepared to take legal action, they will deny the intent behind their behaviour all the way to the steps of the court and then miraculously make an exception.

There are several well-documented cases around the country where this kind of thing has been happening and, if anything, it seems to have got worse in some areas over the last year or two. For instance, Nottingham Teaching PCT had a policy of this kind, which I criticised to their faces in a conference in the City last year organised by the Department of Health's Equality and Human Rights Group.

Other parts of the East Midlands region had policies which funded assessment and treatment of gender identity issues to varying degrees. However recent changes, meant to centralise policy making on so-called "Specialist Services" at regional level, led to a consolidation exercise in each of the ten English Strategic Health Authority regions.

And in East Midlands, rather than levelling services up to the best, they decided they would level down "to be fair". The plan was to adopt the restrictive Nottingham policy for the whole of the rest of the region.

The situation became so bad that one Nottingham patient embarked on a hunger strike, vowing that she was prepared to die to draw attention to what was going on. Fortunately, after a week, she called off the action, telling the BBC "I've been assured that they will fund and support me". Health services should not have to work in this way for anyone.

Departmental Blind Spot

I've been associated with the Department of Health's Equality and Human Rights team for several years now (since 2006), and I and my colleagues have never missed any opportunity to draw attention to these problems and urge the Department to deal with them.

In September 2008 I was formally appointed as an Advisor on LGBT health issues and felt, by then, that there was sufficient documented evidence (in press reports alone) to move beyond the need to measure and prove the problem. Instead, I advised the Department's equality team to address clear and unambiguous challenges:

1. To address the issue of poor commissioning policies in England and promote a best practice approach with adequate funding and choice to address all the documented issues of delays and obstructions
   
2. To address the issues of General Practitioner knowledge and behaviours (as highlighted by the "Engendered Penalties" report in 2007)
   

During the past year I've then pursued these two targets at every available opportunity, being careful to ensure that additional objectives were not allowed to creep in and dilute attention. (Given the opportunity, officials will always put their efforts into the easiest task and use that the deflect attention from harder topics).

However, as the first year of the Department of Health's LGBT Advisory Group drew towards a close, it was apparent that nothing whatsoever had been achieved on either of these objectives. Worse, we seemed to be going backwards, when Ten Downing Street issued a very poorly informed response to a petition about similar problems in Oxfordshire.

Readers of this Blog will know that I wrote immediately to my associates in the Department of Health pointing out the issues with the Number Ten response and demanding action.

Red Card

Shortly after these events I had another meeting of the LGBT Advisory Group, in which my patience and diplomacy simply ran out. Politicians would say that a "full and frank exchange of views" took place.

Following this I also briefed contacts in the Equality and Human Rights Commission (EHRC), who are already undertaking a very detailed investigation of other issues, continuing work begun by the former Commission for Racial Equality.

The issue is that whilst PCTs are autonomous and the Department cannot order them how to apportion their budgets, Ministers do have an absolute responsibility to ensure NHS Trusts don't break the law or violate the principles of the NHS. By now, the officials at DH were conceding that they knew this was what was happening in the case of gender identity patients in some parts of the country.

The issue is made worse by the fact that I had also put forward a suggestion that the Department could address the policy issue very easily by offering to publish the "Guidelines for Commissioners" produced by the Parliamentary Forum on Gender Identity.

This was meant to hand the officials a solution on a plate ... a lifeline which the Equality and Human Rights team at DH seemed quite enthusiastic to seize. However, in our frank exchange of views (above) it had emerged that the Mental Health team in DH, who have policy responsibility for Gender Identity services, was only prepared to "welcome" the guidelines. They were categorically opposed to publishing this clear guidance under an NHS or Department of Health logo.

At the same time as briefing EHRC I also agreed the text of a Parliamentary Written Question with Lynne Jones MP, which she agreed to submit. As Parliament was in recess for the summer, this has only just been answered. However, it has also now been the prompt for the Department to assure me in person that a letter will be going to the Chief Executives of all English PCTs later this week, on this very issue.

When the letter has been sent and I have a copy I will Blog it here. I'll also cover the formal response to the issues I've raised personally with the Department. In the meantime, however, here is the Parliamentary Question and its' answer.

Note that these kinds of answers are usually couched in very careful words like this one, so the value isn't in the words but the fact that the issue has been forced up to the most senior levels, involving Ministers and the Chief Executive of the NHS, David Nicholson.

16 Sep 2009 : Column 2238W—continued

Gender Identity Disorder

Lynne Jones: To ask the Secretary of State for Health what steps he is taking to ensure that all primary care trusts provide accessible, timely and high quality gender identity services. [291225]

Mr. Mike O'Brien: The Department is committed to the delivery of high quality national health service gender identity services. Primary care trust commissioning of gender identity services remains a matter for local prioritisation, with access to services determined by clinical need and local decision-making.

The Department is in the process of writing out to all NHS chief executives and their teams, via the weekly NHS leadership team bulletin the week, to reiterate this commitment to high quality gender identity services and the importance of considering such cases individually, according to clinical need.