Draft guide on transgender NHS care pathways

The Initial GIRES Suggestions and

The Responses provided by the Department of Health

GIRES made a number of suggestions concerning the guide. The responses to those suggestions, provided by the Department of Health, are shown in bold type. The GIRES reasons for making those suggestions are also appended below.

Initial GIRES Suggestions

• •GIRES suggestion: It would be helpful if the scope of the Guide were clarified. At this stage, it only describes the services that four English NHS Gender Identity Clinics (GIC) currently offer: London, Nottingham, Leeds and Sunderland. Attempting to use it to impose a similar model on all the other NHS providers of transgender healthcare in England does not seem feasible. If the Guide is intended to describe the full range of NHS specialist service provision in England, it may need to be a longer document. It does not apply to private provision.
  
  DH Response: We approached the WLMHT, as the largest NHS provider, who elected to work closely with a number of other NHS providers to develop the draft document.  The draft does indeed describe the process that is prevalent in these four clinics.  Please note that we are neither imposing a model nor seeking to describe the full range of provision.  The aim was to ask the largest providers to set out a typical care pathway in the NHS, whilst still allowing for local variation.  It may be that the problem is with the word ‘protocol’ so we may need to consider using a different word to describe the final document.  The document was never intended to apply to private provision.
   

• •GIRES suggestion: Although the Guide includes a brief mention of Specialist Child and Adolescent Services, they seem to require a separate Guide, at least for England, Wales and Northern Ireland.
  
  DH Response: This may be something that the new NHS Commissioning Board may wish to explore in future.
   

• •GIRES suggestion: The process for analysing the results of the survey and assessing the adequacy of present services might be made independent of the GICs that drafted the Guide.
  
  DH Response: DH policy officials and analysts will be analysing the responses received and making the final decisions as regards content. However, we will naturally do this in consultation with the authors of the document.
   

• •GIRES suggestion: All the responses to the survey might be published anonymously.
  
  DH Response: We will explore this to see how feasible it is.  However, we do have concerns that, given the relatively small population size, that even if we anonymise comments – it might still be possible to identify people.
   

• •GIRES suggestion: The deadline for submissions might be deferred, perhaps until 31 January 2013.
  
  DH Response: We need to complete this work during this year of transition which we would be unlikely to be able to do if we extended the period of engagement as you suggest. We will not have a mandate or resources to produce material such as this after April 2013.
   

• •GIRES suggestion: Printed copies of the survey for individuals might be distributed via the GICs and trans organisations, to be returned directly to the DH, in order to engage the many trans stakeholders who do not have access to the internet.
  
  DH Response: Our understanding is that the trans community is very IT literate on the whole. However,  we have already anticipated that some people may not be and the clinics who drafted the document are planning to make hard copies of the document available.  Others clinics and organisations are free to do the same.
   

• •GIRES suggestion: In addition to the survey, the DH might initiate a comprehensive engagement process with stakeholders regarding the Guide; this might become part of the processes that Jo Scott and Gillian Mayo are already undertaking respectively for the NHS Commissioning Board Special Health Authority and for NHS South of England (which could be replicated in the other regions).
  
  DH Response: We do want to engage with stakeholders but we do have limited resources, hence the SurveyMonkey approach. We do not have the capacity to undertake a more comprehensive engagement process.  We have already sent the draft document and SurveyMonkey link to commissioning colleagues.
   

• •GIRES suggestion: The clinicians in all the English GIC’s might wish to participate in an impartially chaired seminar,  to ensure that the Guide accurately describes the services that they all provide.
  
  DH Response: Clinicians are of course free to to organise an event like this.  For our part, we have asked questions on the SurveyMonkey questionnaire that enables clinics to tell us if what is drafted reflects their service too.
   

• •GIRES suggestion: Before publication, the Guide might be subjected to (a) an Equality Analysis and (b) a review of its compliance with Human Rights and Equality Law.
  
  DH Response: The huge GEO exercise that led up to the publication of the trans action plan was the equality analysis.  The action plan (including DH actions) was developed to address the issues arising from that analysis.  We do not now need to do an equality analysis of the actions arising from the GEO analysis. However, the SurveyMonkey questionnaire is a way of continuing to pay due regard.  We already have plans to share the draft document with our legal colleagues.
   

• •GIRES suggestion: The GICs in Scotland, Wales and Northern Ireland might be encouraged to prepare their own individual Guides.
  
  DH Response: We are happy to share information with our colleagues in the other nations though we will not be actively seeking to influence them. 

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GIRES Reasons for making the above Suggestions

GIRES welcomes the Government’s commitment to publish a clear and concise Guide on transgender care pathways and available treatments, aimed at health practitioners and the transgender community.  The charity acknowledges that the Department of Health wants the final document to outline the current position for transgender people seeking gender reassignment services through the NHS. Nonetheless, the GICs in England, Scotland, Wales and Northern Ireland operate within different regimes. The Scottish and Welsh NHS commissioning authorities have already published approaches to treatment that diverge from the current practices in some English GICs. There is no consistency of approach even among the English GICs. Furthermore, it might improve cost effectiveness and reduce waiting times to permit service users with uncomplicated needs to access some gender identity treatments via local multidisciplinary arrangements, rather than the GICs. To ensure patient safety, this might only apply to mental health assessment and hormone medication, in accordance with the latest Standards of Care published by the World Professional Association for Transgender Health (WPATH).

Specialist Child and Adolescent Services are mentioned briefly in the draft Guide. Although they have hitherto been commissioned nationally, future funding arrangements seem to be unclear. These Services duplicate those provided by some GIC’s in the 16 to 18 year old group. In Scotland, there is a service providing mental health assessment and endocrinology for those aged 12 to 18.  It might be helpful for health professionals, including those in CAMHS, schools and families to have a clear description of the services for gender variant young people, which could be contained in a separate Guide. Development of a Guide for Scotland is already under way.

Some English GICs appear to be responding to inappropriately to:

• .The requirements of human rights and equality law 

• .The latest WPATH Standards of Care 

• .NHS policy for providing patients with choice and full involvement in decisions about their healthcare 

The Clinics in London and Nottingham have already conducted an online survey among service users, in March 2011, but have not yet published the results. Inevitably this raises questions about (a) whether or not they are reluctant because the results include adverse opinions about their services and (b) the transparency of any other online consultation process in which these clinics are engaged.

There is uncertainty about the impact that the new NHS arrangements for national commissioning of gender identity services, particularly specialist mental health assessment and surgery, will have on treatment approaches in England, which seem unlikely to be clarified until the beginning of 2013.

The other developments that create uncertainty for the English clinics, as well as those in Scotland, Wales and Northern Ireland are:

• .The incomplete state of the UK Standards of Care on which the Intercollegiate Committee is currently working, chaired by Professor Kevan Wylie on behalf of the Royal College of Psychiatrists; the Committee’s next meeting is not until October 2012 

• .The revised Diagnostic and Statistical Manual, that the American Psychiatric Association is preparing, probably for publication in 2013 

• .The revised International Classification of Diseases, that the World Health Organisation is preparing, also probably for publication in 2013 

The consultation process on which the DH has embarked could perhaps be improved:

• .It relies only on survey/monkey. This excludes the many transgender people who do not have access to the internet, for whom distribution of a printed questionnaire via the GICs may be appropriate. In furtherance of transparency, there should be a commitment to publish the full results of that survey, albeit on an anonymous basis. Also, it would be reassuring to know the process by which the responses generated by the survey will be analysed and who will make the decision on which view to accept in the case of conflict 

• .There is no provision to engage stakeholders in (a) designing the process, (b) writing the draft Guide before distributing it (c) discussing the draft (for which the stakeholder event on 17 July, arranged by Gill May and Jo Scott, would be an excellent model) or  

(d) contributing directly to its further development (as the National Clinical Reference Group for Gender Identity Services aims to achieve by recruiting patient representatives as members of the Group and including transgender organisations and individuals as Associates)

• .The deadline for submitting responses is Friday 28 September 2012, at which date the uncertainties described above will still be unresolved