Improving communication about gender identity services
Welcome to the first of what I hope will be a regular series of on-line postings about NHS England’s work to improve gender identity services.
I have heard directly from individuals and organisations across the trans and non-binary community regarding concerns they have about limited communication from NHS England in relation to this service area. I want to use this blog to start to change that, by talking about the work both underway, and planned, in relation to gender identity services. I hope you find it useful.
Firstly, I should say something about my role in relation to gender services. My job is Regional Director of Specialised Commissioning for London, one of four equivalent roles across the country. NHS England is the responsible commissioner for most, but not all, of the services set out in the interim protocol and the draft service specification. As the lead for London I have direct responsibility for services we commission from West London Gender Identity Clinic, the surgical service at Imperial, and the children and young people’s service at the Tavistock Clinic.
I am writing this blog in my role as chair of the national task and finish group on gender services. This was set up to support the commitment of the NHS England Board to improve gender identity services, specifically relating to:
- Inequitable and fragmented access arrangements
- Variation in services with inconsistent protocols and procedures
- A need for an individual centred approach to care
- Long waiting times for assessment and treatment, particularly for genital surgery
- Poor patient experience in primary and secondary care reported by the transgender communities
Many people wait far too long to access gender surgery. NHS England has confirmed that the 18 week referral to treatment time standard set out in the Constitution applies to gender identity services.
As a commissioner, NHS England is investing £4.4 million more in additional gender surgery procedures in 2015/16, and will invest more again in 2016/17. We are funding the surgical units at full capacity, which means that the key limiting factor for bringing down waiting times more quickly is the need to recruit and train additional surgeons.
The latest available waiting time figures confirm there is still some way to go: the waiting time at Nuffield in Brighton is between four and six months; and at Charing Cross the average is 36 weeks. I propose to use this blog for regular updates on these waiting times.
Long waits for surgery have been the first area of focus, but clearly many people are waiting even longer to be seen for the first time at a Gender Identity Clinic (GIC).
The task and finish group commissioned a report looking at demand and capacity within each clinic, and the current waiting list numbers and waiting times. This report, which is still in draft as it is being checked with the GICs, highlighted great variability between the different clinics.
We are now starting some work with the GICs reviewing their waiting times, and looking at ways in which we can reduce them. I will use this blog to keep you informed on progress with this.
In recognition that many of the concerns put to us are outside of NHS England’s influence, we invited a range of national organisations with responsibilities across regulation, standards, training and education and professional leadership, to a symposium.
This event in June brought together, for the first time, individuals and representatives from the trans and non-binary community with representatives of a wide range of national organisations, to discuss the problems experienced by trans and non-binary people, many of which are about their day to day experience of general health and care services.
The symposium heard some very powerful personal stories from individuals, and attendees identified steps that needed to be taken to improve people’s experience.
You can find a report of the event here and a web cast of the event here. The symposium will be followed up with a further event early in 2016, to review progress against the commitments made on the day.
Earlier this month, the Select Committee on Women and Equalities held a hearing looking at the commissioning of gender identity services. Dr John Dean, Chair of NHS England’s Gender Identity Clinical Reference Group (CRG), was among the witnesses giving evidence. NHS England has submitted to the inquiry a description of the problems and how we are addressing them.
Finally, a ‘hold the date’ for you: Our next Transgender Network workshop will be held on 3 December in London. Further details to follow.
I hope this blog has been helpful, and signals a commitment to improving the way we communicate with you about developments in gender identity services.
Please let us know what you think by responding to the blog or via 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.
22 comments
I am the mother of a 13 year old trans boy. I feel as though I am on the beginning of a very steep learning curve trying to work out how to support my son and access relevant professional support (never mind dealing with my own feelings on the matter). I have been dismayed by the lack of knowledge and experience from professionals, and the fact that I have been able to find no support for parents of transgender teens.
The most useful website/organisation I have found is Gendered Intelligence – will you be inviting them to your network event in December?
In my son’s year at school there are 4 other trans boys who are ‘out’. The school is trying to learn how to support them.We are lucky in Sheffield that we have an LGBT youth group (at least 75% of the current members are trans). This is currently the only support from a professional with any knowledge of transgender issues that my son is accessing (and as a voluntary youth sector charity presumably its funding is as precarious as the rest of the youth sector). Our GP practice had no knowledge or experience of working with trans young people – but they are trying to be supportive and were keen to share the research I had done among the practice staff (not really my job to be educating medical professionals when I am looking for support from them!).
Following the advice on NHS choices we asked for a referral to CAMHS – which was rejected on the grounds that CAMHS had no knowledge or experience of this issue, so the GP has referred my son to the Tavistock.
I tried to find out what the waiting time was likely to be for the first appointment (left a message on their answering machine, waiting for a reply) and then did some internet searching. Found this document from Leeds and Yorkshire http://www.leedsandyorkpft.nhs.uk/_documentbank/Gender_Identity_Service_Waiting_Time_to_First_Appointment_Offered.pdf – waiting time has more than doubled from Q1 14/15 to Q2 15/6 (people seen in Q2 14/15 had waited 500 days) – and the document says ‘The current waiting list if referred now (October 2015) is approximately three and a half years until first appointment’.
This is the adult service – with only one clinic in the whole country working with under 18s – how long will my son have to wait to get any support at all from the NHS?
I have been diagnosed as transgender male to female and have been referred to the Leeds gic but have told I have to wait three years for my initial assesment and know this is far beyond the standard waiting time for referrals and would like to know why so long?
Any help you could give would be appreciated.
Thank you.
Sophie
I returned from living in Australia for the past ten years where I transitioned from male to female. Still Pre op but have lived as a female for the past 8 years. The support I received from the medical community was first class, no waiting to see doctors or specialists. I have been on hormone treatment for all of this time, my health continually monitored.
On returning to the UK, I registered with a GP who informed me that despite all my documentation, letters from relevant specialists in Australia, I could not be prescribed hormones. I would have to register with a GIC in Leeds for assessment and any prescriptions. I was informed that a GP can only offer primary care and they do not have the resources or training to support me. They wrote to Leeds GIC for a referral for assessment (I don’t need assessing thanks) and hormone medication which I do.
I received a reply from Leeds today stating that they have not as yet put me on their waiting list as it is currently.. Wait for it, 3.5 YEARS
So much for 18 weeks.
My point is I am 63, just had breast augmentation in Brussels, and will now have to consider overseas surgery for reassignment. I can’t afford to wait 5 – 8 years for the NHS to see or assist me.
I think frankly it’s a disgrace, there is no commitment to meet the deadlines, the service is fragmented and post code related. How many more of us are left to deal with life on our own without NHS support?
I was directed to your blog as I wanted to find out about how NHS England is going to commission services for congenital heart disease. Now I am confused.
I know this i s a bit late but…
In Januar this year, on the advice of my (private) counsellor, ,I went to see my GP. Having done lots of research, I asked her to refer me to Nottingam GIC.
Two weeks later, she called me back for a sescond appointment, at which she told me she “couldn’t” refer me to Nottingam, bu that I had to go to Norwich (which isn’t even a GIC!) Apparently te CCG had told her tat was how it had to be done. Earaly March, I went t o Norwich, to be told that yes, I am transsexual, so I’m going to be referred to Nottingam. Then the doctor concened went on holiday for two weeks, so it was the end of March by the time he actually wrote to Nottingam. I am still waiting for my appopintment letter. Apparently, I might get an appointment this side of Xmas. So I might (if I am very lucky) get hormones by the middle of next year — by which time I will have been living full-time in my new life for a year, without a single shred of effective support from anyone in the NHS. I asked my GP ifshe wouold arrange blood test for me if I self-medded … but no, apparerntly she “can’t” even do that!
It seems to me that te CCG deliberately misled my GP — for what motive, I can only guess — and that the resulting diversion via Norwich has cost me at least three months — probably more like six months, given that Nottingham’s waiting list went from 6-8 months to 10-12 months in less than a year.
Unlike some of my fellow TSs, I don’t think this is necessarily anti-trans bias. I have come across at least one other instance o f a CCG trying to save itself money by deliberately flouting NHSE and DoH procedures and rules(and lying about it) If any other business behaved in a similar fashion, its directors and senior management would be behind bars by now (and I don’t mean serving drinks!)
Dear Will,
I currently have 3 recommendations for hormones and anti androgen treatments 2 from a private clinic Dr Lorrime & Dr seal , one from Dr Barrett Charing Cross and waiting on Dr Davis recommendation to be typed which normally takes around four months. This will then be 4 recommendations all agreeing that I’m transgender and need to commence treatment. It’s been nearly two years and I have been un able to get treatment, the CCG refuse funding, stating it is the responsibility of NHSE, they redline anti androgen treatments on the traffic light system, the prescribing team also tell my GP they will not recommend this treatment. The CCG say that NHSE do not have a recognised share care agreement, they have the protocol from NHSE regarding roles and responsibilities, but disagree with it and do not recognise it, NHSE do not provide funding for hormone treatments, refer you back to the CCG. no one takes this issue seriously, it’s no ones responsibility , I am left self medicating and can’t even get a blood test as the CCG say they will not provide funding for this neither, I have no where to go, no one to help you are just left with nothing. This has been my experience thus far, which has been incredibly frustrating.
Louise
While it is very positive that greater efforts are being made to communicate more effectively with patients about improving gender services, this blog raises more questions than it answers.
• Gender clinics have been allowed for years to mislead patients, fail to meet their statutory duties and violate patients rights under equality law by claiming the 18-weeks to treatment rule does not apply to them. For NHSE commissioners to report they are now “starting some work” with clinics to review waiting times is a profoundly pathetic and inadequate response to an urgent and chronic problem. NHSE commissioners need to take immediate and determined action to resolve this crisis and force the gender clinics to meet their legal responsibilities to patients. If the clinics were capable of meeting this target without intervention, they would have done so before now. This weak-willed lack of leadership represents an unacceptable neglect of duty on the part of NHSE. Patients have a right to know EXACTLY what is being done NOW to reduce waiting times?
•The new funding for surgery is extremely welcome. However, why is this blog utterly silent about increased funding for gender clinics when chronic underfunding is clearly part of the problem regards waiting times?
• There is reference to a lack of experienced surgeons? Where is NHSEs strategic plan on workforce development that will mean adequate numbers of properly trained and experienced staff? Why is there no reference to Health Education England? We do not want the current lobby of psychiatrists inculcating the next generation of clinicians into their distorted attitudes and practices towards trans people. We need a fresh approach to training and workforce development, led by the NHS body supposedly with expertise in workforce development (HEE). This needs to avoid being dominated by a self-interested clinical lobby and include MEANINGFUL IMPUT FROM TRANS PEOPLE. What work is NHSE doing to ensure that there is a fit-for-purpose workforce able to improve clinical standards?
• There is also reference to an independent report based on the work of commissioned consultants examining the gender clinics? What were the terms of reference for this work? What input did trans people have into the development of the commission? Who was commissioned to do it? What expertise or experience do they have in understanding the needs of trans people? What right will patients have to scrutinise the report’s findings and comment on them before final publication? When will the report be published?
• The Symposium event mentioned was very useful but some significant invited organisations couldn’t be bothered to send a representative. Can we look forward to Dame Barbara Hakin (National Director of Commissioning Operations at NHSE) writing to the heads of those organisations to express our profound disappointment and inviting a more involved response going forward? Specifically, these organisations were: the British Medical Association, Health Education England and the Royal College of Surgeons of England.
• Also at a previous NHSE trans network meeting, Dr. John Dean presented a summary of patient and public feedback on the draft service specification being developed but indicated that this had been limited, especially from certain groups such as trans men – unsurprising since the consultation exercise was poorly publicised. What action is NHSE taking to rectify this in advance of the specification being finalised?
• There is also reference to NHSEs response to the hearing hosted by the Select Committee on Women and Equalities regarding gender services. In the spirit of transparency, may we please have publication ON THIS SITE of the documents or submissions made to that Committee?
• In a final point, as Chair of the NHSE task and finish group for gender services, can Mr Huxter please confirm whether it is correct that there is no patient and public representation on this important group and justify this? How can we rebuild trust and confidence in these processes if key decisions are made behind closed doors in cosy deals between commissioners and provider’s representatives? Nothing about us without us!
I trust that we can look forward to a full set of answers to these important questions in the next blog in this series and soon.
Nick.
Thanks for your detailed comments.
I appreciate your frustration, but we have been open at the Transgender Network Workshop meetings by acknowledging that it will take time to fix things. But that doesn’t mean that we haven’t done anything. Over the past year there has been extensive engagement and planning across NHS England to put remedial measures in place, including a commitment from Board members at the NHS Citizen Assembly. We’ve explained publicly why tackling long waiting times for surgery has been the priority over 2015, resulting in additional investment that now funds the providers at full capacity. And yes, there is more work to be done, including addressing the waiting times in the gender identity clinics, the interface with primary care and young people’s services, and working with partner organisations in the development of a workforce and training plan.
Our analysis of current practice in the gender identity clinics represents the first ever attempt by NHS commissioners to tackle the problems that you describe via a concerted, national process. We will present the findings at the Transgender Network Workshop in December. We have asked all of the gender identity clinics to attend a commissioning meeting in October, and we will be open in describing the discussions and outcomes so that both providers and commissioners can be held accountable for progress over the course of our work.
Will Huxter
Please, if you can do just one thing, can you get Charing Cross GIC to pick up the phone, reply to messages left on their answering machine, and write letters in a reasonable time. Never in my dealings with anyone have I come across such poor communications. This seems to go on unchecked year after year and no sanctions are ever applied.
It took me a year to get my first appointment at Charing Cross. I attended a total of two appointments. I have been referred for needing a breast reduction and was encouraged, specifically in the welcome induction I had, that you treat non-binary people.
My first appointment with a psychiatrist (I believe) was okay, but she seemed like she knew nothing about hormone treatments and how they work. I have a disorder where I do not make sex hormones, so I take both oestrogen and testosterone. Not having body hair is somewhat dysphoric for me, so that’s why I’m on testosterone. It’s also been improving my mood. The psychiatrist insisted that I had to warn them and tell them if I “didn’t want a beard”. I reiterated to her that I wasn’t on near enough to grow one but she kept on about it. Someone who’s treating trans people should know that, even those on a full dose of T, beards don’t just spring out of people’s faces. They take a long time to grow and for some people taking T, it doesn’t even happen.
My second appointment, 6 months later, went well – or so I thought. Dr. Davies seemed willing to help me and I eagerly awaited his communication.
I received, a month later, a discharge letter that was pretty offensive and horrible. Not only did they manage to not even spell my name correctly, but Dr. Davies didn’t bother asking me what my pronoun was and just assumed that because I have a feminine name that I’m okay with being called “she”. I had told them I could do nothing about being mistaken as female, regardless of what my name is and I’m resigned to the fact that this society will never see me for who I am — Mr. Davies wrote that I was happy with that. Happy =/= resigned. It doesn’t make me happy but I can’t do anything about it. Changing my name to something neutral will not solve it. Being mistaken for a man is not the same as being recognised as an agender person!!
Additionally, Mr. Davies got my chest size wrong and defined me as presenting as female based on having shoulder length hair. If shoulder length hair makes you female, then there’s a load of guys who are fans of heavy metal that are in for a lesson.
My treatment was horrible. And I have no other recourse but to be re-referred, which could take another year. I have emailed a group to complain but no one has got back to me. It would be one thing to be turned away because no one has the funds, but to be denied because my name is too feminine is, point blank, ridiculous. Not to mention, Dr. Davies didn’t even bother asking me if I was going to pursue a name change.
Who cares if the waiting times are better if your assessment of how “serious” someone is about wanting surgery is based on outdated gender roles from the 50s??? I feel like a complete dolt given the fact that I was so confident Charing Cross would help me. And I told other non-binary people with confidence that I believed be helped. Only after 2 years, I was discarded like trash with absolutely no understanding or regard for how these past 2 years of waiting has affected my mental health.
I sincerely hope you can fix the GIC… but you have your work cut out for you.
Thank you for coming forward with this presentation and its proposals. It will be necessary for us to know what is actually moving forward and what is not. Much as I completed the initial form covering transgender issues for the Task & Finish group earlier this year, there is little talk and thus consideration for the undervalued Facial Feminisation surgery (FFS). This happens to be misunderstood and categorized incorrectly by the NHS. I would like to see more discussion and focus concerning the value and importance of this “vital” option. In particular its overall general need as well as specifically how much it positively affects the lives of Trans-females.
Further, the training of general staff in their conduct towards service users and their training about recognising specific Transgender matters and concern.
Thank you once again.
How long will it take to actually implement change within the NHS around gender services? I work in the NHS and my daughter is a gender patient.
I have been frustrated and angered each time we have had contact from the local MH services (who openly admitted they knew nothing about “gender problems”) to the Tavistock clinic to GIC Charing Cross where we are now.
I have learnt a lot and now have to chase up every letter back to GP when there is a change in medication. I have to work out and infer what has been discussed so I can put it into action for my very preoccupied daughter who is an emotional and mental wreck because of this journey she has had to go on.
I have come across a coupe of individuals who are brilliant but on the whole Gender is the worst service I have encountered both professionally and privately.
Time for a revolution. Take Gender out of MH sphere and give it its own service. Set up a centre of excellence somewhere in the country (preferably easy to access for people without cars as a lot of gender pts don’t drive) and then, once the model is working, repeat this in satellites across the country so people can access the same level of service everywhere. There are too many variations currently.
All clinicians and especially GP’s should spend time learning about gender so they don’t just commence pts on SSRI’s without knowing anything. Drugs don’t make gender issues go away! They just make pts more lethargic and less likely to engage with people and services.
I attended a symposium on local MH services in my area about 7 years ago and the changes we talked about and came up with have still not been implemented. I attended another event more recently and we discussed the same issues again.
Change for gender should be patient led and directed. The number of complaints raised in this area should have brought about some change if the service was truly working.
My daughters journey is far from over and her family are with her each step of the way to ensure people do their job properly. There are many people who have been rejected by family, friends and the NHS, who do they turn to for help and support?
Dear Mr Huxter,
I welcome your blog, and hope that you can use it to provide greater transparency about gender counselling, hormones and treatment times available on the NHS.
I was referred in mid-February to the Laurels GIC in Exeter. Assuming a four-to-six-week wait between appointment letter (which I have yet to receive) and actual appointment with a counsellor, I will have waited at least EIGHT MONTHS to be seen. This may be part of the reason behind our 41 percent suicide rate. I do not wish to become part of that tragic statistic.
Anything that you can do to get that waiting time down will save lives. The discrimination that I face during my transition is relentless, and every day makes me feel more vulnerable.
Please help us all to get professional support as soon as possible.
Thank you.
Regards,
Jennifer Dean (Miss).
hi i was wondering , i went to see my doctor , about six months ago and told her about i want to start transtioning from female to male , i then got sent to mr ball from norwich , then he sent a letter to northumbland which ive now got to wait , for annipointment , as it could take 9 months to a year , ive been like a boy for 40 years ive know it since i was 5, i came out as soon as my son was 18 , so he wold understand , ive told all my family and work , ive changed my name , by depol , work know s. about my name change so dose family , ive waited all these years to come out , as it had been very hard for me to come out in my younger years , as i have been throught allot , trying to pretend , im some one im not , its a waiting game now , very frustrating , as im ready to change have been for years , but i just need to start the injections but have to go throught the prosess of seeing more doctors , its just so time consuming on waititng to see them , when i know what i have wanted for years , im ready but can not do nothing , is there something you can help me with , i live in Norwich.
Is the Transgender Network meeting open to individuals to attend and will this blog be the best place to keep up to date with details of the next meeting? I say this I often seem to here about these type of events after they have happened and, as a transgender person, there seem to be organisations involved in these but, as one of the individuals concerned, I’ve never found the opportunity to get involved and give my own view.
“Many people wait far too long to access gender surgery. NHS England has confirmed that the 18 week referral to treatment time standard set out in the Constitution applies to gender identity services.” From which referral is this supposed to be from for Gender services? First one re gender with the GP, first with mental health services. first with the gatekeeper psychiatrist? As all of these applied to us, and at none did we feel we would see any appropriate service within a year let alone 18 weeks.
I hasten to add: thanks for the blog post though. positive step forward 🙂
please stop saying “trans and non-binary people”
trans is an umbrella term that includes non-binary people. a trans person is anyone who’s gender differs from the gender they were designated at birth
separating out non-binary people from “trans” as an adjective delegitimises non-binary people’s transness while reifying exclusionary binary trans narratives about “true transexuals”
a better way to communicate what I think you’re trying to communicate might be “binary and non-binary trans people” or some variation on that
thanks 🙂
Some non-binary people do not identify as trans, though.
The first thing you could do is stopping GICs from using punitive and punishment-led language in all communications.
Endlessly we are told that we must do this or that or we will be removed entirely from the process and have to start again.
When you couple this with the endemic level of lost reports, letters and correspondence, people in the system are repeatedly forced to start again through no fault of their own.
Endlessly, in a variety of forums, those within the system complain and suffer from the inability of the GIC to keep the patients informed of their position within the system. The refusal of the GIC to accept detail changes over the phone, and the quite frankly ludicrous difficulty in actually contacting the GIC, leads to easily preventable problems.