Reducing variation in gender identity services
Welcome to the second of my blogs about gender identity services, and the work being done by NHS England to improve the experience of people with gender dysphoria in the NHS.
It has been good to receive feedback from people who have read the previous blog, and I hope that you have found my responses to your comments helpful.
There are two main things that I want to talk about this time: a meeting between the Gender Identity Clinics (GICs) and NHS England which I chaired on 23 October; and the final oral evidence session of the Women and Equalities Select Committee’s Inquiry on Transgender Equality, at which I gave evidence on 28 October.
The meeting with the GICs was prompted by a review we have done looking at the ways in which the different GICs across the country operate, and the unacceptably long waiting times for people trying to access their services. Six of the seven GICs were represented, and we had a very helpful discussion about ways in which we can start to tackle these waits by increasing capacity, and providing more information and support to people while they are waiting to be seen.
During the meeting I confirmed our intention to increase investment in gender identity services overall from April 2016, with the specific aim of reducing waiting times.
We will be asking the GICs to come up with proposals for doing this, including the recruitment and training of new staff. This won’t be a quick fix, given the limited number of appropriately experienced clinical staff in the field, but it is really important that we make a start on this now.
The GICs reported some inconsistencies in NHS England’s interpretation of the interim protocol for commissioning gender identity services across the country. We will address this through our work on revising the specification.
It’s clear from the data we gather from the GICs, and the information that is published by UK Trans Info, that there are inconsistencies in how the different clinics report on waiting times and the number of people waiting to be seen. We agreed with the GICs last week to do some work with them on a common approach to reporting, so that there is a single and consistent set of information that we can share with you in the future. The same also applies to reporting of waiting times from our surgical providers.
The House of Commons Select Committee on Women and Equalities launched its inquiry into Transgender Equality earlier this year. For its final oral evidence session, the Select Committee included among its witnesses two people from an NHS perspective: Jane Ellison, MP, the Minister of Public Health, and me. I was there as a commissioner, and chair of the Gender Task & Finish Group. The Select Committee had previously taken evidence from clinicians including Dr John Dean, chair of the Clinical Reference Group for Gender Identity Services.
I was very pleased to have the opportunity to give evidence to the Select Committee, and to be able to talk about some of the positive things we have done as NHS England.
I strongly agree that transgender equality is very important, and it is part of my job to promote equality in the services that I commission.
It was right for me to acknowledge publicly, as I did, the distress and dissatisfaction that people experience from long waits for treatment, and the examples that the Committee had heard from witnesses of poor support from different parts of the NHS. These problems are at the heart of what we need to tackle. Both the Minister and I were clear that we welcome the attention that the Committee has given to these issues, and that we will welcome their report and its recommendations.
As part of my evidence, I highlighted a number of key facts:
- NHS England spends £25million a year on gender identity services overall.
- For the current financial year, in addition to extra investment of over £4 million on gender surgery, NHS England has increased spend on the children’s service at the Tavistock & Portman by almost £1m, and has put more money into GICs across the country.
- The level of increase in demand for services is outstripping the current level of extra investment, and we need to, and will, spend more money on services in the next financial year.
I also confirmed that we expect to be going out to consultation early next year on the revised specification for services for children and young people.
I look forward to sharing regular updates with you about our progress in delivering the improvements which I know are needed in services for children, young people and adults with gender dysphoria.
In the meantime, please get in touch via this blog, or Twitter, #NHSgenderid
Will Huxter
Will 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.
16 comments
Dear Will,
In your written evidence to the Women and Equality Committee, you clarify that the concept of living in role (often referred to as ‘real life experience’) is only a requirement for trans people prior to genital reconstruction surgeries, and cite the relevant guidance. To illustrate your point you give two case studies of real life experience. However, one of these case studies relates to a patient ‘C’ who you explicitly say did not have or want any genital reconstruction surgery!
Surely this demonstrates exactly the converse of your intended point, and supports trans patient arguments that notions of ‘real life experience’ or ‘living in role’ are being unnecessarily applied to trans patients who do not seek genital reconstruction surgery, even though the WPATH guidelines say these patients do not need to live in role?
Dear Michael
Thanks for your question.
In the case study, the patient had transitioned and had lived in his true gender for three years before a referral to a gender identity clinic. There was no suggestion intended that the patient was required to undergo a real-life test after the referral to the clinic and I apologise if that’s wasn’t clear.
Will
As a Trans woman and involved with Healthwatch Devon on a voluntary basis. The end of June I was invited to go to a symposium for gender services in London, to represent Healthwatch.
I am glad your informed more than some (even me) on the state of the systems used. As one who has gone through the system, I know it’s failings and can see where improvements can be made. Most of all I am sure from paragraph four in this news blog, at the end you state your to tackle the waits, information and support whilst waiting.
It’s my opinion there is a need for fluid information from the GIC’s to ones GP and back, with better training for GP’s or local services. With interim psycholocical support locally when needed. The support and information received in a timely manner, from either ones GP or allotted GIC is a must. I could understand why I had no back up locally if things went wrong. This in my case this non – existent/ remote back up would have saved my initial operation going wrong, then having to go back to have even more invasive surgery. Thus inevitably costing more to the NHS. If I were in an unstable state of mind, as I was a year or two before my operation, I would have committed suicide.
I do hope your able to help change the system but talk to those who know, like UK Trans info or Healthwatch who get feedback from individuals like myself.
I agree with what you have found. It’s lack of suitable trained clinician and effective staff to do the operations and admin to get information out timely. Cut the red tape, make a more streamlined system, with flow of communications.
Regards
Leanne Wilkinson ( volunteer at Healthwatch Devon)
Dear Leanne
Apologies for the delay in responding to your comment.
We will indeed continue our discussions with people who use transgender services, and with patient groups, as we develop our work to reduce waiting times and improve the patient experience. I will be taking the opportunity to update members of the Transgender Network at the next workshop in December.
Kind regards
Will
Thanks for your blog post. I do have a couple of questions:
1) Why were only 6 of the 7 gender clinics in England included in the review?
2) Why is there still a cap on the number of patients some gender clinics are allowed to see per year? (eg Leeds is only allowed to see about 160 patients per year, even if they have clinical capacity to see more)
Dear Jess
Apologies for the delay in responding to your post, and thanks for your questions.
The clinic that was not visited by our analyst was the Northampton clinic, which is the smallest of the seven clinics. We did ask the Northampton clinic to take part, but we struggled to arrange dates that would keep us within the overall time frame for the project. Our analyst concluded that the best approach was to proceed in the absence of Northampton, and that its omission would not materially impact on the approach or overall findings.
In response to your second question, NHS England has given a commitment to move away from contracts that cap activity in gender identity services from 2016/17. We are currently working through potential funding and contracting arrangements for next year in discussion with providers. I will provide an update at the Transgender Network meeting on 3 December.
Kind regards
Will
http://carolsteele45.blogspot.co.uk/2015/11/inequalities-in-gender-identity-services.html
Dear Carol
Apologies for the delay in responding to your post and thankyou for the link to your detailed blog about current commissioning arrangements for gender identity services.
You’re probably aware that NHS England consulted on a draft service specification for adult gender identity services in March 2015 and we presented the outcome of the consultation at the most recent Transgender Network workshop in the summer. A refined draft policy on facial hair reduction is due to be delivered by the Clinical Reference Group to NHS England by January 2016. NHS England will have to decide whether to prioritise this policy over other proposed investments in specialised services (which could include drugs, devices, treatments or interventions). We will take advice from the Clinical Priorities Advisory Group including on the extent to which the proposal is supported by clinical evidence.
We have also given a commitment to the Parliamentary Transgender Equality Inquiry that we will consider its eventual recommendations to see how they may inform the development of the service specification. I will give an update at the Transgender Network workshop in December.
Kind regards
Will
With all due respect, it’s not just about long waiting times. It’s about being mistreated or held to 50s gender role standards when you’re actually there.
I waited more than a year for my first appointments. Another six months for my second. After two long years of waiting, being assured that the GIC would treat and respect non-binary people, I was discharged and told I couldn’t possibly be serious about being non-binary due to my “feminine” name.
Not only was my name not even spelled correctly in my discharge letter, but several incorrect facts about me were given by the psychiatrist who saw me. They got my chest size wrong, they misgendered me (I don’t recall even being asked what my pronoun was), and they completely disregarded my identity and misrepresented my feelings – saying things that I was “okay” with being misgendered. There’s a huge difference with being resigned to how society sees you and being fine with it.
To add insult to injury, despite requesting to make a complaint about how I was treated, NO ONE has managed to get back to me.
Point blank the problem doesn’t just lie in long wait times. It lies in trans people having to jump through hoops in order to get any access to treatment. Why on earth would someone be referred to and wait ages for a GIC appointment on a whim? The idea that ANYBODY should be thrown out of a GIC because they aren’t *serious* about their identity is detestable. It is not up to doctors to decide the validity of a trans person’s identity. Do doctors make people with styes or cancerous moles wait for ages and go through their life histories to make sure they’re serious about what they want to do? Not likely.
Do you force people who get cochlear implants through a psychiatric investigation to determine whether or not they are serious about wanting them? No. So why the should this be any different?
The entire structure you have is faulty. The entire concept of a trans person having to -prove- their identity in order to receive treatment is cruel, heartless and wrong. And so long as you have this as a model for how GICs operate, it won’t matter how long trans people wait.
Dear Lola
I apologise for the delay in responding to your post and I am sorry to learn of your poor experience.
We don’t want people to have to jump through hoops to use NHS services but, as with any other health service, we do need to make sure that care is personalised and appropriate to the individual. People who are referred to the gender identity clinics all have unique, different and often quite complex needs, so the focus of the draft service specification for gender identity services (on which we consulted earlier this year) is on the provision of tailor-made support for the individual, leading to an individualised care plan.
I don’t know the facts of your complaint, but if you have still not received a satisfactory response you may want to consider NHS England’s complaints process.
Kind regards
Will
Dear Will
Thank you for you most helpful update. GIRES welcomes the extra investment. However, it seems insufficient to prevent a continuing increase in waiting lists. What can be done to improve the cost-effectiveness of the existing expenditure on the gender identity clinics?
Bernard Reed
Bernard Reed OBE, MA, MBA
[Edited to remove personal information]
Dear Bernard
Thanks for your email and apologies for the delayed response.
You’re right that in addition to the increased investment in gender identity services we also need to consider how to make the best use of existing resources. We started this conversation with the gender identity clinics at a joint meeting in October and it is something that will inform our contract negotiations for the 2016/17 year.
Kind regards
Will
I am writing as the Chair of the BMA GPs’ Clinical and Prescribing Subcommittee.
As GPs we support the principle of providing this group of people with high quality care wherever they live. Unfortunately, NHS England has failed to address the proper commissioning of ongoing care within practices, claiming that it should be provided as part of our normal contracts, which is factually incorrect. The result is that the care provided by GPs is done without funding, and more importantly from the view of the transgender community, without adequate quality control.
The amount of money that would be required to properly commission these is tiny compared to the overall budget available, and is essential if people are to be reassured that they will receive proper care once discharged from the specialist services, or indeed during this process. If NHSE is serious about addressing variation in care it needs to accept that the commissioning arrangements need to provide for the entire transformation journey.
As a standard GP I have no specialist knowledge in prescribing drugs to support people in transitioning. I certainly have no experience in the long term consequences of using these drugs.
To have NHSE and the GICs decide that it is solely my responsibility is doing a grave disservice to people who wish to transition safely.
Andrew Green calls for prescribing and long term management to be properly resourced.
I fully support him in this. I would ask all members of the transgender community to support your GPs in calling for this complex area of clinical medicine to be appropriately resourced by NHSE and not forced upon unsupported GPs.
Dear Dr Green
Thank you for your post about funding for GP surgeries, and apologies for the delayed response.
One of the most common complaints that we receive from people use transgender services is the lack of support in primary care, including for symptoms un-related to a person’s gender. We will continue to raise this issue through the formal channels.
Kind regards
Will Huxter
that is not really an answer, more a politicians obfuscation. Can we get some clarity here?