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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.
As the mother of a transgender child I was recently asked to share my perspectives with mental health practitioners, on issues confronting transgender young people. Because for me and for my daughter the two things are inextricably linked. Yet it shocks me that they should be – that knowing you are a gender other than that assigned to you at birth – knowing that as an incontrovertible truth, and wanting to do something about it, should lead inevitably to significant mental health issues
I have watched my daughter from the age of 15 onwards suffer crippling anxiety attacks and depression that have led to self-harm, to becoming increasingly isolated and withdrawn and a nervous breakdown. She sat in rooms with a succession of CAMHS specialists who tried to find a solution through Cognitive Behavioural Therapy.
When she finally told me that she was a girl, it was a relief to have identified, to have a name for this hitherto nameless issue. When she told her clinical psychologist at CAMHS, she was referred to the Tavistock Clinic in Leeds but told that she had probably missed that year’s intake – it was 2014, but would be taken on in March 2015. We waited. She rang Leeds in February 2015 and was told no she would not be taken on that year. She spoke to her GP and asked if she could be referred to Nottingham as we had heard they had shorter waiting lists. We think this has happened but she has not heard anything. And since then … Silence.
Nothing has happened, except my daughter’s mental health has deteriorated further. No-one is providing any form of support whatsoever except for continuing prescriptions of Fluoxetin. She has been suicidal but unless she is actually trying to kill herself, when the Crisis team can step in, there is no support other than a referral to Psychology Services in 3 months’ time. My experience of transition is one of a landscape with no pathways, no signposts, no guides or maps, despite the young person having such a strong sense of destination.
For the last 2 years she, we, have been utterly lost. So there seems to be no alternative but to go outside the NHS to make progress.
We have gone private – to access an expensive Gender Clinic in London. We may turn to the grey market to access the hormones that she needs. I don’t know what else to do – watching a young person condemned to a state of limbo is just unbearable.
The existing system is utterly wrong – talking to other parents, I was shocked to hear of the level of bargaining that their transgender children encountered in their treatment – being told that they wouldn’t be allowed to continue with it unless they continued with their studies; stopped drinking; lost weight; conformed to what was expected of them by this system.
I have been shocked to encounter a world that seems so full of confusion, mystery and obfuscation; where it feels that the focus is not on getting the young person to where they want to be as quickly as possible, but rather to condemn them to a state of limbo which can only exacerbate their anguish. To put them in a holding bay, to wait until, it seems, that they have suffered sufficiently to prove the validity of their intent, and where there seems to be just silence and professional fear of trusting what they are saying.
I think that as far as Gender transition is concerned, the professional bodies need to take a far more pragmatic attitude to risk – just as huge public bodies across the land are doing; after all what is the worst thing that can happen if you just believe and act upon what these young people are telling you.
I’m interested in your line of work.
NHS England don’t want to know and do nothing to help.
Whilst I appreciat the work being undertaken to alleviate the obvious problems associated with pathways and timescales in this area of NHS work, there is clearly much still to do to help transgender people using local services which are still very much a postcode lottery with excuses given as funding constraints locally for voice coaching whereas other ccg areas happily supporting such essential assistance, as an example. There needs to be urgent work undertaken to ensure this appalling postcode lottery approach does not permeate the NHS providing essential support for transgender people.
Hello Mr Huxter
I had an appointment with my doctor on December 17, 2015. I talked to him for a sex change. He said that we should wait until the end of February this year for a new meeting with an expert psychologist who will talk.
How long I have to wait to give me a prescription for hormones?
Please could you give me an answer.
With best wishes .
I have been waiting since August for my first appointment with the gender Clinic in Exeter and it is likely to be in February at the earliest. By the time I get that appointment I will have been living as a woman for over 12 months. This is a ridiculous amount of time to wait for that initial appointment. Fortunately friends have been supportive and have been more useful than the system which is supposed to be in place.
Here is what gender fluid genderqueer non binary patients desperately want to see change…
– non binary surgery entitlement without the need for HRT
– not pressuried into living a ”gender role” for 2 years or more
– the appalling GIC waiting list and denied access to general mental health services for other issues
– the binary society system and equality act silencing and discriminating us as much as mental health services so we have no legal position
– appealing passport gender mark X not working or resolved against our human rights
– forced into separate GP medical records a new one is started if changing gender ( i have a right to query or my past healthcare be known of )
– GRC diagnosing gender identity disorder without bullying or rejecting patients declaring a ”preferred” gender which cannot be the one you were assigned at birth
My Transition journey to female started in 1979 (please humour me by reading this through) Charing Cross GIC was a ruthless clinic back then patients had to obey or be taken off the patient list. I got there due to right sided brain lesion that caused hypersexuality and violence for which the successful treatment is Estrogen therapy (Canadian Institute of Psychiatry) it worked so left without choice I changed gender to survive. Here’s the problem, in 1979/1980 you were made to get treatments the NHS would not pay for, I was made to get private cosmetic surgery simply to stay on the clinical list for contineous treatment, the best I could accpet was half way measures i.e. rhinoplasty but not feminine somewhere inbetween. Facial Feminisation Surgery (FFS) did not exist back then. Looking right, sounding right and presenting well is the difference between being accepted in public without question in the new gender role the alternative is ridicule, verbal abuse, being subject to attack and so on. Many of us of that era were left resourcing whatever finances we had to seek the right medical interventions as the NHS would not assist in a number of areas. I am for the NHS undertaking FFS and would be first in the queue, all the personal finiances were resoruceds to cover treatments I consider to have been part of the pathway to transition. FFS should form part of the protocol for gender re-assigned male to female Trans people. There was little choice and all the savings, pension money and personal finance was used for this purpose, survival depended on it. So for older people that were not allowed to take hormone blockers to prevent the onset of puberty, can they be helped now and have FFS as part of NHS treatment pathway?
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 am mum to 13yrs old mtf and i would love to be in touch with you. I have just contacted the shef lgbt to join my daughter
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.
The reason the wait is so long in Leeds is because NHS England only comissioned them to see 160 people per year. Even if they could see more people NHS England would not pay for this. As referrals to Leeds (all GICs in fact) have grown every year this means the waiting list has stacked up. The 160 cap has now been removed and the clinic is looking at ways to get the waiting list down to 18 weeks. This will probably include recruiting and training more staff so may take some time. Hope this helps.
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?
Thankyou for expressing that there is a problem.
I can see that your focus at the moment is bringing down times for surgery, which is admirable. However, due to changes in society more Trans people than ever are asking for help. In my opinion the focus should be made on getting people in to the system (i.e. 1st GIC appointments) quickly. This “limbo” period when waiting for the 1st appointment is particularly stressful and frustrating as many people want to get on to the ladder and start to access the support they need (physcologically and hormone prescriptions). Delays in this phase when the “wrong” hormones are acting on the body – effecting permenant non reversable changes are particularly damaging, whereas the later phases when under endocrinological control are not.
I hope you read this comment and understand my point of view
Why is it that those who still have facial hair post op who no longer suffer Gender Dysphoria are denied electrolysis or laser on the NHS. Through communicating with others, it seems many are suffering the affects of this, yet the NHS refuses to help, it seems cruel that CCG’s across the country are leaving people in this way. It has the affect of many facing verbal abuse, physical attacks and threats, i.e. hate crime, this because the NHS won’t budge on this issue. It’s no wonder many women hate TS people, because they too are denied, I was verbally abused by a lady who had a minor facial hair issue, she assumed I was getting it and she wasn’t, I told her off, I told I too am denied just like her. The NHS should not withdraw vital funding for treatments like this, I now go without heating to fund my own laser, but that won’t help as I need electrolysis too, what do I do to fund that, any suggestions, get my phone & internet disconnected, end my mobile phone contract, leaving me socially exiled, or stop eating all together, maybe that’s the way, starve myself to fund electrolysis, yes, I can see the headline Woman starves herself in cold property because she needed laser and electrolysis NHS England and their CCG’s denied her, but to no avail, she died of starvation and cold, her local CCG and NHS were unable to comment on “individual cases” disgraceful NHS England.
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!)
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.
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.
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.
While this appears to be a positive step, I’m afraid I’ve been rendered sceptical by the slow, outdated, punitive approach taken by the entire system of the NHS. Here are a short list of issues I’ve had with GICs, and ones I hope, but don’t expect, that this development will take into account.
1) Inflexibility – you do it the GIC’s way, or not at all. I knew that for my dysphoria and happiness, I needed surgery prior to hormones. The NHS would not listen to me in the slightest and were talking three years before I could access surgery, and six months on hormones before even discussing surgery. I went private. One appointment later, I have a surgery date booked. Most people do not have that option, and are needlessly suffering because the NHS system refuses to treat their patients with any respect for their feelings.
2) Ignorance – I asked my GP if she would prescribe hormones on the instruction of a private endocrinologist. She had no idea. Her practice manager had no idea. I gave them the NHS guidelines, they still had no idea. I was referred to the local NHS GIC without my wanting to, because they had no idea. The GIC clearly had no conversation with my GP and have just added me to a waiting list, for a pathway approach not appropriate to my needs.
3) Obstruction – there is a well-known clinician at the Charing Cross clinic who is famous in transgender circles for refusing to prescribe hormones, no matter the circumstances. Enough said.
4) Waiting times – four years in Leeds, a friend in Huddersfield was recently told. Four years for a first appointment. That’s four years of completely needless suffering, applied to a group with a stupidly high suicide rate.
5) Punishments – doing anything unexpected gets you punished. I got surgery privately, so I have to wait longer for hormones, for some reason. I am moving from one GIC area to another, so I have to start right at the bottom of the waiting list again.
6) GIC differences – they work very differently and all provide different services. They also, like hospitals, come with reputations. Currently, Nottingham is generally considered to be hostile and unfriendly. There isn’t one in Bristol, meaning the entire South West default to The Laurels, sometimes from up to 100 miles away. Pity the folk in Oxford who get to choose from Exeter or London.
7) Referral to CAMHS – referring to a mental health service just reinforces the idea that transgender people are mentally ill. I appreciate psychiatrists are best placed to diagnose gender dysphoria, but actively referring to CAMHS is a vile approach. Areas that still use CAMHS as a middle man between GPs and GICs need to stop.
What would happen if everyone on a GIC list actually demanded that the 18 week target was met? If every single person put in official complaints about having to wait too long, there’d be chaos. If this was the case in any other department, it would be headline news. As it is, nobody cares. The NHS themselves don’t care. There is no support from GPs while you’re waiting, no support from the clinic while you’re waiting, and you wait all that time for a one-hour appointment that does and says exactly nothing. Yet the private sector – which is just as busy, thanks to the complete lack of services in the UK – accepted my self-referral in May, diagnosed me in July, and has me booked for surgery in November.
I honestly don’t believe you’ll sort any of it out, because to allow it to get to this state in the first place means that transgender people are not on anybody’s priorities list, no matter how low down. The suicide rate will continue to climb, the NHS will continue to drag its feet, GPs will continue to bat transgender patients off, and nothing will change.
I hope I’m wrong, but after what feels like fighting a war just to get permission to be me, I doubt it.
Thanks for your email.
For me, your scepticism emphasises the importance of NHS England, the providers and other relevant organisations with the influence to change things for the better being open and transparent in the work that we are doing to turn things around so that we can be held to account, and so that you can judge how far we are making progress. I hope that in due course we will have begun to change your mind.
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.
We are sorry to hear about the poor communication that you have experienced. NHS England is working closely with the gender identity clinics to improve services, and patient experience, and will raise this issue with the service directly.
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.
We are sorry to hear about your poor experience. I cannot comment on an individual case on a public blog, but we see that you have made a complaint and have not received a response. It is not clear to us whether the complaint was made to NHS England or to the service. In case it’s helpful, the process for making complaints to NHS England is described here: https://www.england.nhs.uk/contact-us/complaint/
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.
The detail of what, it is proposed, NHS England commissions as part of the gender identity services pathway was the subject of public consultation in March 2015. The proposed service specification can be found here https://www.engage.england.nhs.uk/consultation/specialised-services-consultation. Please note that this consultation is now closed. We are currently reviewing the evidence around elements of the proposed service specification before making a final decision.
The training of staff and cultural awareness were certainly themes identified during discussions on the day of the symposium, and are issues which we will working through, with partner organisations, and will return to at a future symposium event.
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?
Certainly the variability in how the clinics operate is something that we have been looking at over the past few months, and the clinics have been asked to attend a meeting with NHS England in October so that we can begin to shape the work needed to improve the way in which these services are delivered and commissioned. You also raise the issue of training on trans-health issues for the wider professional workforce, and this is something that is being discussed within the symposium work programme. We will keep you updated about this work via the blog.
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.
Jennifer Dean (Miss).
Your point is well made, and reflects similar concerns that have been highlighted to us at the Transgender Network meetings. We are conscious that long waiting times can leave people feeling vulnerable. So, we want to bring waiting times down as quickly as we can, and also ensure that appropriate and accessible local support is available to everyone who needs it. We will keep you informed about our work in this area via this blog.
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.
Thank you for taking the time to write and share your experience. I cannot comment on your individual case, of course, but it does highlight the reasons why NHS England is trying to reduce waiting times as soon as we can.
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.
The Transgender Network meetings are, unfortunately, limited in terms of the number of people able who can attend. In the main, attendees are invited individuals who are representing wider groups of transgender and non-binary people. We are, however, really keen to work with both individuals and groups/organisations. If you are interested in getting involved please let us have your contact details by emailing firstname.lastname@example.org.
You can also sign up for regular updates about the work we do and how we are seeking citizen voice and participation – https://www.england.nhs.uk/publications/bulletins/in-touch/
I think the Transgender Network Meetings are a great idea. I also appreciate that there’s a limitation of how many such a meeting can accomodate. However, there’s a widespread feeling that the views of individuals on the ground, are not adequately represented. While it’s fine to have representatives from well known organisations which of course have an important role to place in the process there’s seems to be no voice for an individual such as myself. Could some places not be made available in advance for individual participants? Could you also please email me at the above address as I have a few other points I’d like to share.
“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.
Thanks for your question. A number of people have asked us to clarify how the 18 week Referral to Treatment standard is applied to gender identity services, and we will do this in a future blog.
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
Some non-binary people do not identify as trans, though.
Thanks for the feedback. We have started to do some work regarding language and terminology in this area, and we will involve members of the Transgender Network in developing that. We are at a very early stage, but will keep you informed about progress via this blog. We will also look at this issue in more depth at the next meeting of the Network in December.
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.
Thanks for your feedback, and I’m sorry to hear about your poor experience. We are trying to improve communications between the NHS and people who use gender identity services. The production of this blog is a first step. We are aware of people’s concerns regarding use of language, and wider communications issues, across the NHS, and and the Board of NHS England got to hear these concerns directly at the NHS Citizen Assembly last autumn. Improving communication is a priority for NHS England, and we will be working through how best to do this, in partnership with service users. We will keep you updated about progress via this blog.