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Focus on transgender equality highlights poor experience of trans people in daily lives – Will Huxter

The Chair of the NHS England Gender Identity Task and Finish Group reflects on a new top-level report on transgender issues:

Welcome to my latest blog on gender identity services.

I want to say something about the report of the Women and Equalities Select Committee on Transgender Equality, and to update on discussions with the adult Gender Identity Clinics about capacity and waiting times. I also want to talk about the work we are doing with Health Education England on developing the workforce of the future.

The Government will be making a formal response to the Women and Equalities Select Committee, including the recommendations in relation to health. Ahead of that, I thought it would be helpful to share some personal reflections, in my role as Chair of the NHS England Gender Identity Task and Finish Group.

Firstly, I very much welcome the initiative by the Women and Equalities Select Committee to focus on transgender equality for their first inquiry. This has brought a great deal of Parliamentary and media attention to the challenges which the trans community face in their daily lives, including huge difficulties in getting prompt access to supportive specialist and general health services.

The report lays bare the poor experience of many people, and rightly highlights the unacceptable delays in getting NHS treatment.

As part of my oral evidence to the inquiry, I acknowledged that the current waiting times are far too long, and confirmed that we are working with the gender identity clinics (GICs) and the surgical providers to build capacity and to reduce these waits.

At the end of last year, NHS England asked the seven GICs to submit proposals for increasing their capacity and new ways of working, to reduce the length of time that people wait to be seen. We also asked the GICs to make proposals about the support they could provide to people before they have their first appointment with the clinic.

All seven GICS have sent in their plans, which we are reviewing ahead of a meeting at the end of this month with all of the providers. Following this, NHS England will agree with each of the GICs the level of additional investment from the start of the new financial year on 1 April 2016.

Alongside the discussions with the adult services, we are also looking at the additional capacity required for the children and young people’s service run by the Tavistock and Portman NHS Foundation Trust. And 2016/17 will be year two of a planned increase in funding for the providers of genital surgery.

All of the clinics have reported that one of the difficulties they face is workforce – the lack of suitably trained staff to take on the specialist roles which are being created in nursing, medicine, psychology and other professions. This issue has also been picked up in the Committee’s report.

NHS England is now working with Health Education England to look at the curriculum and training for post-graduate doctors, and awareness training that could be made available to staff across the NHS. These discussions are at an early stage, but I am hopeful that this will make a big difference to ensuring that we have the workforce we need for the future to deliver the improved services we all want to see.

Finally, we will be holding the next of our symposiums on gender issues at the start of March. At this meeting, I envisage that NHS England and Health Education England will jointly describe the work that is needed to develop a credible workforce and training strategy, with a specific focus on the help that we need from other public sector organisations and professional bodies.

I hope this blog is helpful. As always, I welcome your comments and feedback.


Thumbnail image of Will HuxterWill Huxter is Regional Director of Specialised Commissioning (London) at NHS England and currently chair of the NHS England Gender Task & Finish Group.

Prior to joining NHS England in June 2014, Will worked in a range of commissioning roles within the NHS, and for five years at an NHS Trust.

He has also spent eight years working in the voluntary sector.

 

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19 comments

  1. Hi Will, I am an NHS GP with a special interest in sexual health and gender care. My feeling is that we need to really get involved with training GPs to deliver a lot of the more routine care and advice. I am an avid teacher and educator and would love to set up some GP training to help empower GPs to take the burden off secondary care.

    Dr Helen Webberley

  2. Lauren Meechan says:

    Dear Will,

    I am a journalism student at the University of Kent and I am doing my dissertation on the trans community and finding out about their experience of going to their GP and the impact long waiting lists are having on their lives. I spoke to Nick Douglas who wrote a guide for GP’s on the Brighton and Hove Clinical Commissioning Group website and he recommended me to read your blog.

    It would be great if I could arrange a phone call one day and talk about the work you do as Regional Director of Specialised Commissioning for NHS England and the work that the NHS are doing to help improve waiting times and the standard of care for the trans community.

    I hope we can get in touch soon
    Thank you
    Lauren Meechan

    • Will Huxter says:

      Dear Lauren

      Thanks for your post.

      Could you please drop me a note, with contact details, with further information?

      NHS England, Southside, Mezzanine, 105 Victoria Street, London SW1E 6QT

      Kind regards

      Will

  3. Nick says:

    Dear Will

    Many thanks for the update. I wanted to address two issues raised by your blog. Firstly, and briefly on the issue of training and professional development, it is very welcome that PHE is now leading on this, as my fear was that it would be left to the clinics. This would have been a disaster: the current group of clinicians inculcating the next generation with their bizarre beliefs (e.g. the concept of the real life experience) and lack of patient-centred practice. I understand there was a call for trans organisations with expertise in workforce development to be involved in this but due to underfunding of the trans third-sector, my concern is that there are a limited number of organisations with expertise able to take up the offer. Can you reassure us that there will be full and proper patient and public involvement (PPI) in workforce development and that the clinics will not be allowed to dominate? Further detail on how PPI will be done for this exercise would be welcome.

    Secondly, I wanted to focus in detail on the issue of funding. Clearly, additional funding is very welcome indeed, especially in the tough financial climate. However, I have serious concerns about NHSE continuing to fund these failing services. There is a very strong sense of NHSE throwing good money after bad. I’ll focus here on just two reasons: 1) shocking waste and inefficiency and, 2) not the slightest evidence that giving them increased funding leads to improvements in quality of service for patients. A couple of examples to back up my assertions.

    Waste and Inefficiency
    I have never seen any credible scientific clinical or research evidence that patient outcomes are improved if they are mandatorily ‘diagnosed’ with gender dysphoria by two clinicians instead of one. In the vast majority of cases this is utterly unnecessary. To borrow an example from the mental health field, it is like a psychiatrist saying “Yes, I’m absolutely convinced you have depression but I can’t treat you until my colleague says the same thing (in six month’s to a year’s time if you can get an appointment).”

    So why do the English GICs insist on this absurd dogma of a mandatory two-opinion rule. Quite simply, money. This absurd nonsense derives from the Royal College of Psychiatrist’s Guidance, which is in turn based on the WPATH guidelines. Why should we be suspicious? Because the two-opinion model originates from North America where clinicians bill individuals directly (or more rarely health insurance companies) for each consultation. Kerching! £££ Double the billing fees! The English GICs are being allowed to pull the same con-trick. Why? Because it keeps patients ‘on the books’ as having received services when they are in fact receiving nothing at all – languishing on a waiting list for a second opinion does not constitute receiving a service. Granted, a small number of patients may need a second opinion for clinical reasons but there has never been any barrier to clinicians asking colleagues for a second-opinion if needed – doctors have been doing this as long as there have been doctors! Dropping this absurd dogma would mean that waiting times for assessment and ‘diagnosis’ could probably be cut in half. The two-opinion approach has no credible scientific evidence of individual patient benefit, does patients as a whole considerable harm in terms of increased waiting time and wastes precious NHS resources, yet the GICs insist on it. So why should we trust the existing clinics with even more public money?

    No Evidence of Improvement
    If there was some evidence that making increased funds available to the GICs actually led to improved quality for patients, that would provide some reassurance, but there isn’t. Again, to back up my assertion, let’s look at administration in the largest clinic – West London Mental Health NHS Trust (Charing Cross GIC). Visit the Trans Info* website and see the report of a 2012 NHS inquiry detailing actions to respond to the appalling standards of administration. The same report states that additional resources had even then been provided for improvement. Visit the Charing Cross GIC website today and find an apology that has been there for months regarding the same appalling administration. Poor administration is not just an annoyance, it is clinically unsafe: lost letters and months in delays for referrals to be processed puts patient safety at risk. The report shows that more money has already been pumped in to improve the admin services to absolutely no benefit whatsoever.

    I could add further examples but I think the point is made. English GIC services have been underfunded for years and it is right and proper that NHSE is now putting that right. But increasing funding on its own is not enough. As patients, we MUST have evidence that commissioners are holding the GICs to account for every single penny of both current and extra expenditure. We need complete financial transparency from NHSE. What are the current providers receiving, how is the money being spent, how much additional funding is being provided and what is it being used for are basic questions that need to be answered. Crucially, patients need to know what safeguards are in place to ensure that extra funding won’t just be swallowed up in Trust deficits and will lead to tangible improvement in quality of services for patients. At the last NHSE Trans Network meeting, we were promised a full financial overview at the next meeting, which I hope we can look forward to.

    It was also a great disappointment to see that only current providers were encouraged to bid for funding in the recent round. Why is no funding being set aside for bids from new providers? We urgently need and want new providers in this field. Why? 1) To break the current provider monopoly, 2) patient choice. As long as the current providers know they will keep getting the funding whether they improve or not there is no incentive to provide patients with decent quality services. As patients, we need to know that ultimately, the current providers will have their funding removed if they do not improve. This is only possible if there are alternative providers for commissioners to contract with. I see no initiatives from NHSE to provide a safety net if these providers have to be de-commissioned because of failure to improve. Also, many of us have lost faith in the current providers to such a degree that we would like our care to be managed by another service; a new service, not dominated by the same stale and outdated approaches to ‘treatment’ and poor attitudes that we currently endure. Theoretically, NHS patients are supposed to have choice. At the moment, this is a distant dream and will remain so unless NHSE takes proactive steps to encourage new providers to emerge.

    The days of cosy deals where providers fail to deliver and commissioners ‘look the other way’ because they know they are underfunding are over. Now the money is finally being provided. But patients are tired of toothless commissioning that fails to use remedial contracting mechanisms that would have been deployed years ago with any other failing service in the NHS. Can we also look forward to a presentation at the next Network meeting on a new regime of contracting, governance and proper oversight to ensure that more money means real improvement?

    Thanks

    Nick.

    * http://uktrans.info/attachments/article/435/GIC-administration-review.pdf
    * http://www.wlmht.nhs.uk/gi/gender-identity-clinic/

    • Anonymous says:

      Dear Nick

      Thanks for taking the time to share your thoughts.

      Regarding workforce, I’ve recently written to the Chief Executive of Health Education England asking for help and guidance in working with NHS England in the development of a workforce plan. I’ll give more details in my next blog.

      On the issue of funding, I think it would be helpful to separate the issues that you raise. Firstly, there is the urgent issue of trying to reduce the unsatisfactory waiting times into the gender identity clinics and surgical providers. We know that this will take time even when funding providers at full cost (as we are this year with the surgical providers) given the workforce constraints. So, we can’t afford to wait before making this additional investment.

      I disagree that NHS England is “throwing good money after bad”, and I am sure that people currently on the waiting list who want to see a gender identity specialist would disagree too.

      You are right though that we need to consider carefully how we invest additional money from 2016/17 onwards, and this has been the focus of my recent discussions with the gender identity clinics. I have been clear with them that additional money will only be released to providers who can demonstrate that it will be used efficiently and effectively in reducing waiting times and improving patient outcomes.

      On the issue of transparency, I can absolutely assure you that additional investment in 2016/17 will not be re-allocated elsewhere in the organisations. We will agree with the providers how they will be held to account, and how investment will be monitored and the impacts measured by commissioners. I will give more information in my blog as negotiations for 2016/17 progress.

      You raise the issue of poor administrative support in the gender identity clinics. I have heard similar concerns from some people at the Transgender Network events, and from complaints that I have received, and I absolutely agree that poor administration could result in serious risks to patient care. This was something that I raised at a previous meeting with the gender identity clinics, and I will put this on the next agenda as a specific item for discussion. We have also recognised this in our discussions with the GICs about investment to reduce waiting times; a number of clinics have requested additional administrative staffing to tackle the sorts of problems which you have raised.

      You also raise the appropriateness of current clinical protocols, and how the current configuration of providers relates to patient choice; you suggest the possibility of designating new gender identity clinics. We’re not in a position to consider the possibility of new gender identity clinics until we have agreed what will replace the current interim protocol for commissioning gender identity services.

      We are considering how the committee’s report on Transgender Equality relates to our work on the draft service specification and I will share further details in due course. In any event, for the reasons that I describe above, the immediate priority is to reduce the long waiting times in the current providers and the urgency for this is not compatible with any longer-term process of procurement for new services.

      I do want to clarify something in this regard. You suggest that the introduction of new providers would allow different models of care to develop. The reality is that all providers would have to follow the same service specification, hence the importance of getting this element of our work absolutely right.

      I will of course provide a presentation on these issues at the next Transgender Workshop.

      Best wishes

      Will

  4. Carol Steele says:

    How about a radical suggestion?

    I carried out a survey a while back and approx half of all M2F patients would opt for FFS over GCS as they feel that it would greatly lessen the dypshoria to the point that they could live with it. It would also help people in being able to work as they would feel more confident in themselves.

    Doing this would reduce the immediate strain on surgeons specialising in GCS and also the resultant bottleneck which is occurring in the process at this time. There are surgeons specialising in FFS who have spare capacity.

    Just a thought for you to consider. Radical – yes; would it work – yes (according to the data I have collected).

  5. jerry luke says:

    Your last blog did not show any comments.
    i would like to ask, again, what support is being offered to GPs to help them in prescribing specialist drugs.
    Currently there is a vague recommendation from the GIC, with no resource from the CCG, that GPs prescribe and monitor drugs of which they have no real experience.
    This becomes a nightmare when our patients have finished their transition and wish to remain on specialist medication but do not wish to remain under the GIC.
    The various documents produced by NHSE are a complete abrogation of responsibility and not fit for purpose.
    Once again I call upon the transgender community to insist that prescribing and monitoring is taken up by NHSE as a vital issue and not dropped into the ‘too hard to sort out’ long grass

    • Anonymous says:

      Dear Dr Luke

      Thanks for your question. NHS England addressed this issue in a 2014 circular that was shared with general practitioners and clinical commissioning groups. It can be found here http://shsc.nhs.uk/wp-content/uploads/2014/08/NHS-England-Specialised-Services-Circular.pdf

      The circular acknowledges that GPs have an important role in the healthcare of transgender people, including when they no longer have a need for specialised gender identity services. The circular also sets out that prescribing the drugs (to which you refer) for transgender people is safe, and is in accordance with the General Medical Council’s “Good Practice in Prescribing and Managing Medicines and Devices” guidance.

      GPs are encouraged to collaborate with the gender identity clinics, and as the commissioner of these clinics we expect the gender identity specialists to provide support on prescribing and monitoring for those GPs who need it.

      The recent parliamentary select committee inquiry into Transgender Equality had a lot to say about the role of primary care and we will carefully consider the report’s findings and recommendations.

      Yours

      Will Huxter

      • Anonymous says:

        Dear Will

        Thank you for taking the time to reply.

        The 2014 circular was written by the GICs and NHSE. It has no endorsement from RCGP GPC or GMC. It is nothing more than an attempt by The GICs to offload specialist prescribing onto generalists.

        Whilst the support if GICs to prescribing and monitoring there is, once again , no mention of how this is to be resourced. Clearly it is not core General Practice and yet I am unable to find any mention of NHSE cooperating with CCGs to resource this extra work.

        You mention transgender people no longer needing specialised gender identity services. If they remain on hormonal therapy then they need specialised input. Once again this cannot be left to a generalist. It may be that local endocrinology clinics are appropriate here but this needs to be acknowledged.

        I would welcome your comments on the recent parliamentary select committee inquiry, I was unable to find any evidence presented to this inquiry from Primary care, perhaps you could direct me to it if i have missed this.

        Finally I do not believe you are offering appropriate care and support for transgender patients. They deserve to have their specialised prescribing needs fully resourced within Primary, secondary and specialised care. Trying to dump the responsibility onto GPs is attempting to offer an inadequate service

  6. Alexis Pendleton says:

    From what i have heard elsewhere; the lack of trained professionals is one of the biggests difficulties facing the GIC’s.

    Another major factor appears to be the funding arrangements; I have spoken with several GIC’s who all state that they cannot comment on lead in times until the ‘additional investment from the start of the new financial year on 1 April 2016.’ as acknowledged.

    The impression I get is that these are having a big impact on being able to offer more appointments. Even if more funding is available the limited number of professionals prevents the abilty to offer the appointments.

    From experience (although early on in transition) the lack of information and communication is my most fustrating issue.

    I must say however that the service of which the NHS offers for gender issues (how ever slow it may feel to some) is incredible; full medicle support for physical and mental all for free. I can’t think of anywhere else in the world where you would get such an expert service for no cost.

    • Anonymous says:

      Dear Alexis

      Thank you for your post.

      We are aware that the lack of trained professionals is a significant problem that has to be overcome, and I am pleased that this was highlighted in the recent report of the parliamentary select committee inquiry. We are in discussions with Health Education England about how to act upon those findings and recommendations, and the focus of our next symposium in March will be on workforce and training.

      I am meeting with representatives of all of the gender identity clinics on 28 January as part of the process for assessing business plans for 2016/17. NHS England has committed to deploying additional funding in gender identity services from next year, and we will do so where providers are able to demonstrate that waiting lists will be reduced. I will also take the opportunity to remind the clinics about the repeated concerns that we hear about the lack of information and communication.

      Thank you also for your praise for the expert services which the NHS offers for gender services. I will pass on your comments to the providers.

      Kind regards

      Will Huxter

    • glenn says:

      Cancelling appointments at last minute because of a need to go to a conference is not good enough, then asking patient to write for another appointment. Ringing various departments to find a solution to a simple question. Turning up for appointment with psychiatrist at clinic only to be told they are not sure the reason for appointment,seriously. I feel like giving up and I have had first lot of surgery. No faith in the system

  7. Christine Jane says:

    In the meantime we wait, over 15 months for me so far and not a jot of support. If cancer patients had to wait as long there would be a national outcry. As always there may or may not be a possible solution sometime in the never never. How about an urgent circular to all GPs telling them where they can get support and telling them that they must prescribe hormones and monitor patients, and refer to secondary treatment such as hair removal via laser or electrolysis and speech therapy, My last GP point blank refused any support whatsoever and never bothered to reply to a letter I sent him. Having worked all my life, and served my country as a soldier I feel completely let down by the NHS.

    • Anonymous says:

      Dear Christine

      Thanks for your post, and I’m sorry to hear of your experience.

      As I explain in other responses (above) we have issued guidance to general practitioners on prescribing responsibilities. We are in the processing of assessing where we can most effectively deploy additional funding in the gender identity clinics from 2016/17. The additional funding will be used to create additional capacity, and to reduce the unacceptable waiting times which many people face when seeking support from our specialist gender services.

      Kind regards

      Will Huxter

  8. Dr. Wendy Peters says:

    I am a retired Gp , I am a a transwoman and have worked as a clinical teacher at Southampton for 26 years as well as being a principal in general practice for 29 years. I am a diversity role model and attend educational workshops in secondary schools.
    In view of your comments about postgraduate training I would be very willing to help if such a role appears !, do you have any suggestions?

    • Anonymous says:

      Dear Dr Peters

      Thank you for your post, and for your offer to contribute to our work.

      Discussions with Health Education are at an early stage, and will need to involve various other public bodies and professional associations as they progress. I will provide further updates in future blogs.

      Kind regards

      Will Huxter

  9. melissa wells says:

    as someone who is currently using the Nottingham gender clinic service ,i would like to say that one of the biggest ways you might shorten waiting times is for the clinic to stop insisting that you have to wait 18 months minimum in the REAL LIFE EXPERIENCE before recommending srs surgery for those who know what they want , how can waiting an additional 18 months from diagnosis help you caop with surgery ?. if i had a cancer of some sort i would not be told that i have to wait 18 months before i can have any surgery so i can prepare for it this just makes no sense to me, especially since they said after my 4th appointment that they know and i know what i want. i also think that it is wrong for them to make you stop self medicating for 6 months after diagnosis before putting you on cross sex hormones, going back through male puberty at my age was absolutely awful,and then i had to rego female puberty again when they started me on hormones, this is very hard on anyone going through it once and especially when you are older. now it seems to me you have way to many people on hold in the system who are not receiving any support but are just having to wait , just to keep there 18 month time frame which my specialist there told me its 18 months because its always been 18 months , no real reason other that that.it also seems if you are going to have to wait the additional 18 months for surgery they could at least use the time constructively and provide donor site hair removal in that time, as the first time you see the surgeon you will then get put on hold again while you get this done, come on NHS its not rocket science to cut waiting time stop putting people on hold for no reason other that historical waiting times.

    • Anonymous says:

      Dear Melissa

      Thanks for writing, and I’m sorry to hear of your concerns about the requirement for a period of real life experience.

      I am afraid I can’t comment on your particular case, but the recent parliamentary inquiry on Transgender Equality made recommendations to NHS England about reviewing treatment protocols. We are carefully considering how this is best achieved and I will give updates via future blogs.

      With kind regards

      Will Huxter