When we heard that the BBC Victoria Derbyshire Show was reporting on the waiting lists for NHS Gender Identity Clinics (GIC) we sent an email out to our service users to ask for their experiences…. The response was overwhelming.
Clearly Victoria Derbyshire couldn’t share everyone’s story, so we decided to collect some of the anonymous accounts from, those GenderGP patients who responded, and post them here. The words have not been changed and the cases all relate to the Charing Cross Gender Identity Clinic. Similar stories can be heard from people looking to access care via every GIC around the country…
Took them 8 months after that, May 2019, to write to me again, to invite me to a workshop information session. This session had a large number of people like myself (on the waiting list) gathering together to receive information on how the transition works. Although some of the information was useful, it was a bit of a waste of time to be honest, because our individual transitions were still on hold and the information given can be easily found online.
Only a few days ago, Friday 14th February, I received another letter from the GIC, excited to open it in the hope that it would be an appointment date, I was wrong. They were sending me a letter to tell me that I had to stop smoking. Although nothing wrong with the letter, I think this letter should have been sent to me after my referral was made and not almost two years later. I am nothing but disappointed with GIC, especially after this letter. I knew the waiting time would be long, hence why I decided to go private for my HRT and top surgery, but I can only imagine how individuals that are not able to go private must feel. It would be nice if the GIC communicated with their patients regarding the estimated waiting time and provided some supportive information regarding mental health options. I understand that they must be overwhelmed with the number of patients, but equally, they must look after each patient in a way or another.
Dysphoria is not an easy thing to deal with, especially for those who have no options but to wait on the NHS GIC and I hope a change is coming very soon before more people suffer from this.
I’ve been on the NHS Charing Cross waiting list for about 2 years and haven’t had a single consultation yet.
I applied when I was entering college and am now half way through my 1st year of Uni
I received a letter telling me that the waiting list was 14 moths long and therefore I should expect an appointment in May 2019. I rang the GIC at the end of May as I hadn’t heard from them and was informed that due to staff leaving the waiting list was now 24 months long. That would mean I should have heard from them by now and I haven’t.
I think they’re fudging the statistics by inviting people to an information day. I attended this after waiting approximately 11 months. Consequently it’s been over a year since I attended this information day!
I have been in the Charing Cross waiting list since March 2018.
I spoke to Charing Cross Gender Clinic in January to ask when I would likely be seen. I was informed it was not within 2 years. I V might be seen in 2020 but they could not confirm this.
I have given up and booked a private surgical consultation in March. In the time I have been waiting I have socially transitioned for over 2 years and been on Hormones for a year and a half yet I still have to wait for a first appointment to be assessed then 18 months till an appointment that they can do something then possibly another 18 months to a surgical appointment despite my writing to them to explain this, there is no flexibility in this one size fits all process, no pre assessment to get people on the right path quickly based on their needs.
Something must change, this is intolerable.
Hi I’m currently with the CHX GIC
I applied in June 2017,
My first appointment (initial interview) was December 2019
My second appointment (gender dysphoria diagnosis) is currently booked in for March 2020
I was referred on 8th February 2018 to the Tavistock and Portman child and adolescent clinic aged just 16. the letter said they aimed for a first appointment within 18 weeks, but had a waiting list of 14 months.
I’m still waiting for even a first appointment date.
I’m now 18 and am too old for the kids clinic, so am now on the Charing Cross waiting list. it is expected according to them to be not any earlier than July 2020. then there’s a 12-18 months gap between appointments.
It is usual to get testosterone approved at second or third appointment, with takes me to at least July 2021 for hormone therapy. plus a surgery waiting list which they told would be around another year or two. therefore I’ve had to pay for private care with GenderGP, as my GP surgery won’t provide bridging hormones or shared care, and I wouldn’t have made it to 18 without started my correct puberty. I will also need to pay around £9000 for private surgery as I can’t wait as long as is needed for NHS.
I’ve been on the waiting list since my referral June 18.
I’m self medicating.
I have been invited to what they describe as a “pre-first appointment workshop'” next week during which a handful of people on the waiting list will be told during a 6hour session what to bring to the first appointment and what help is available before their first proper appointments – This might explain the, disingenuous, massaging of their statistics to show ~1 year waiting times.
Upon being invited to this “pre-first appointment workshop” I phoned Charring Cross to check where I was in the queue, assuming this workshop meant I would be seen soon – I will be seen in approximately sometime in Q4 of 2020, however I was told they are behind schedule already so it was likely I would have my first proper appointment in early 2021.
I strongly believe the 1 year waiting time stated is a morally incorrect massaging of statistics.
I was referred to the Tavistock Gender Clinic in November 2018 and I have no contact from them to date
I have been on the waiting list at Charing Cross for 23 months, without having any help, information or a rough 1st appointment date sent to me by them.
I have not had my initial appointment and was told 24 months. I called earlier this year to update some details and was told that I will not be seen this year.
This means that it will have been at least 27 months if I am seen, at the earliest, in Jan 2021
I had my first appointment with Charring Cross GIC last week, so am technically not on the waiting list anymore.
However, it seemed worth mentioning since I am currently 22, and was referred to Charring Cross when I was 17. I spent nearly five years waiting for that first appointment.
I’ve yet to receive any date for an initial appointment. I’m very surprised to hear that the GIC are claiming their waiting period is 1 year as I was advised by them when my referral went through that I should expect to wait 1.5 to 2 years.
If you are currently on a waiting list for a UK Gender Identity Clinic and are looking for medical or therapeutic support while you wait, you can contact us via our Help Centre and reach out.
We aim to support anyone who may need our services, so please don’t let your financial situation be a barrier to getting in touch with us.
I read the testimonies with recognition, and sadness that many people are in a worse situation than myself. I’ve at least had my gender dysphoria recognised (after a year) and I have just been offered a telephone consultation with a specialist nurse prior to my “second diagnostic assessment”, hopefully within 3 years of referral by my GP. Gender GP have been my lifeline in the meantime.
It is clear that the GICs need to work more closely with GPs to support them to provide initial steps that will enable many people to take the first practical steps in gender-affirming HRT rather than appearing to work in a silo.
I have just gone past the two year mark with no indication what so ever as to when I will get my first assessment. I do what I can by self medicating using my own funds and thankfully my GP has a arranged for regular blood test monitoring. My consultant at the dysphoria clinic has advised against taking hormones because of associated risks but the risk of doing nothing is far greater to my mental health I feel. I can’t go back now and will fund my own reassignment surgery if I have to. It’s a lonely place at times but I try to be positive in the hope that I will get the call soon.
I was referred in March 2018 to the laurels. I had acknowledgement of my referral a few weeks later and have heard nothing more.
I’m privately transitioning and am on bridging hormones for the last two years.
Great, I got my letter from them a few weeks ago. Nice to know they’re doing well :s
I’ve been on the waiting list since February 2018. Been invited to an information day however apart from that no contact and no info. I called them recently and they told be to call back in March to find out more info for times. I am finding it increasingly difficult to cope at this point as they can no longer give me an estimated waiting time and considering they told me 18 months when I first got on the waiting list…
NHS GIC services are terrible and incompetent. I have now finished my transition but not without making several complaints to Tavistock and Portman. At my first appointment in 2017 I was to be placed on SLT waiting list. 3 yrs later I discovered the clinician had forgotten to put me on the waiting list. I had my first surgical opinion and all was good. I attended for my second surgical opinion. The clinician didn’t know if she was my second opinion or not and was fixated on wether or not I wanted penetrative sex. ( I am married to my CIS wife). This shows a complete misunderstanding of what being authentically transexual means. She also stated that “ unfortunately you still look like a man” !!! Since 2017 I have had only 4 blood monitoring tests. Two of those were pre op tests. This resulted in my Testosterone level being way below the female range and oestrogen being sub optimal for almost two years !! There has been no post op follow up and TBH even though my surgery was a success I was not treated as an individual by the surgical team. It was like being at an assembly line or puppy mill. There has been NO follow up post op with the necessary bone density testing etc and I had to complain vociferously to get GIC to do their job and carry out blood monitoring. I would advise that you take control of your treatment and keep records. Medical mistakes by GIC are frequent and the only way to ensure safe and appropriate treatment is basically take control. You are the patient and the ‘experts’ need to be made to listen to you. Be as proactive as possible in your care because GIC will not be. The lip service NHS trans services are a farce. Eight sessions of facial electrolysis does not even begin to remove a beard growth. The average needed is 24 sessions. Four sessions of SLT are quite literally a waste of time. When will the NHS and GIC start to take this life long condition seriously and provide timely and expert individualised treatment instead of the basics to appear politically correct. Why is there no support whilst on their waiting list? How many people suffer or worse whilst waiting for their appointments ?
Gender GP provide a quiet literally, life saving service filling the huge spaces left by the NHS waiting lists and services. Gender GP quickly started me on the road to my transition for over a year whilst waiting for the NHS paltry services to begin.
All these stories sound horribly familiar. I was referred to Nottingham GIC in April 2017 and I got a letter three months later saying that an appointment would be at least 2 years away and not to contact them on the meantime. Since then I’ve heard nothing at all not even when I told them I’d changed my name and NHS number. Without Gender GP I’d be in a really bad way.
I was refered in October 2017 to charing cross! I rang them in December last year and was told they were dealing with September 2017 referrals so i felt hopeful that i would get an appointment soon. i was then told by someone in a fb group that they had been told the same 3 months before me so its all a pack of lies! Gendergp have been my saviour and i really dont know where i would be right now if i didnt have them helping me. Ive totally given up hope of getting top surgery through the nhs and i am now attempting to save for surgery abroad. Something has got to change!
I self referred to Sandyford on the 7th Jan 2016, which was unfortunately the earliest I could as I had never heard anything about these places and until then was under the belief that I had to save thousands and find a private clinic to help. I had several issues with Sandyford, Glasgow. I even had a member of admin staff forward my emails about how much I was struggling to her colleague who had been ignoring me and she said above my emails, to her colleague.
Hey
Please see below lol
Thank you.
Lol? I raised my concerns that she had made it seem like she found my situation to be amusing or funny and got no apology, just excuses and justifications from her colleague.
I recently have been back in contact with them because my doctor decided to contact them as apparently their guidelines state they are only allowed to work with Sandyford or other UK based clinics, I did tell them GenderGp has clinics in the UK so that technically means them too but they insisted on going with Sandyford.
I and my doctors recently had a letter from Sandyford apologizing for my situation and I finally have an appointment there on the 19th March, just over 4 years after my initial contact with them. I also had an email back from them just before this apologizing for everything and saying how they had noticed that I had been on and off their list and they are confused as to why I was removed in the first place because the reasons the old admin team gave for doing this were not right, so they would try and get it sorted as soon as possible. They said the new admin staff were working through a massive backlog of messages left from the old admin team and are working to do better than before.
I have only heard good things about the rest of the staff in Sandyford but that old admin team, when they decided for some reason not to take you seriously, they sure made your journey much too much dragged out! 4 and a bit years and the only reason the Gp and Sandyford finally stepped up was because I found Gendergp and started hrt with them and probably because I kept going on about how GenderGp had learned much more about me in 1 month than Sandyford had in, at that point 3+ years and how that is evidence that it is not that hard for them to do info gathering in the beginning of a referral and make plans for patients sooner, rather than leaving them waiting with no support, without even knowing how much they are struggling. if they worked the way GenderGp do it would probably work wonders for reducing the waiting list.
The NHS complain about insufficient funding for GIC’s being part of the problem with waiting lists, so I thought I would ask how many people have similar stories to mine. I was referred to Leeds GIC in Sept 2017 while living in Yorkshire but moved back to the South West in May 2018 and yet I still have to travel to Leeds for my appointments at a cost of £260+ to the NHS. I live 10 minutes away from Exeter GIC If I walk. Obviously I enquired about switching my treatment and was told that if I did I would be placed back at the beginning of the waiting list for Exeter. (until after my official diagnosis of Gender Dysphoria) my 1st appointment was in Feb 2019 still waiting for my 2nd anytime in the next couple of months meaning another £260+ and an 18hour round trip.
I previously attending Sheffield GIC just for the counselling services when I thought I was genderqueer and wanted to help unwrap that. I was referred late 2015, wouldn’t have my first appointment until early 2017 and started the regular sessions in early 2018. During the wait, I had a lot self-reflection that made a need for those sessions less urgent, but I still attended them.
I was re-referred towards the end of 2018 after learning I need to transition, being given a waiting time of 72 weeks. I was invited to an information workshop session late last year. I opted out of the proposed date due to availability, and because I don’t see the value in them, and haven’t been re-invited despite a promise of a follow-up letter by phone.
Meanwhile, I’ve been with GenderGP who have been far more affirmative in their process centreing *me*, allowing me to go at a pace *I’m* comfortable with. They have been far more informative and helpful about the smaller steps in the transition process than what I’ve heard about the NHS, who produce a checklist and expect you to have ticked everything by your next appointment with no advice on how to tackle the obstacles you *will* face. Even if GICs are now generally more open about the differing narratives and needs of trans people, they do nothing to ease the discomfort or fear that we could be denied care if they don’t feel we need it, even if we *know* we do. If it’s a dice roll on what kind of doctor I end up getting, is it really worth waiting for three years for the potentially be made to feel I have to “prove” myself because they won’t adapt their processes?
I don’t want to paint an overwhelmingly negative or biased picture of NHS GICs but I recall things from my first stint at Sheffield that make me feel uneasy and hear many other stories that mas made me seriously question their capability to take proper take of trans people under their wing. And this is *without* the ridiculous waiting times!
I have been waiting roughly 115 weeks, over 2 years for my first appointment. I was referred towards the end of college, now i’m nearly done with my second year of university. I have been a woman socially for 3 years.
This is disgusting, I have heard nothing from the clinic except invite letters to information days, which I refuse to waste my time with.
I am a man who has been in the system for over 43 years. Been on hormones 19 years. Top surgery 16 years ago. My GIC got closed down by CX years ago. Had all the funding, diagnoses and referrals for full lower surgery. Even had first appointments scheduled, but then they got cancelled, with the surgeon. The funding for it started 2002 and was confirmed 2004, the cancelled appointments 2005. Repeatedly told had to be re-referred. CX several times refused to treat me. Got referred yet again in 2017 then heard nothing and told to wait. 2020 found out my referrals lost or possibly never done! Doctors may not re-refer me till December 2020 or December 2021.
I was referred to GIDs in March 2018 and received a letter today to schedule my first appointment for next week. In these two and a half years i have periodically asked the clinic whether i would be seen any time soon and their reply was always a flat ‘no’ – with no indication as to when i might get my first appointment. I am 17 so have only just been able to get a job and begin saving up to go private, which will take me a good few years. Im really not sure whether that or the nhs will be quicker at this point!
It still hurts to think back to my time and life wasted, even if small in comparison to the wait of some others, I still felt each day was too long to wait.
I consider myself fortunate in some aspects but still bitter inside over simply needing to go through this process at all.
I first went to the Drs in 2000, aged 9. The Dr laughed when I explained what was wrong.
Some severe depression later, my family finally agreed to take me back to the Drs in 2015. I was made to see CAMHS, and roughly 7 different psychiatrists who wanted to “cure the depression to cure the gender problems”.
I was also referred to a Gender clinic at aged 16. They couldn’t see me before aged 18 (and noone thought to refer me to Tavistock despite me asking).
My clinic then did explain later that they lowered their cut off age to 16 so young people dont have to go through the same wait.
However, I know their current waiting list is 2yrs, so referred at 16, you’d still have the same wait I had.
I pushed to show how I’d been living as male already for ages, so long story short, hormones were prescribed and I had all surgery by the time I was going through uni.
I would never have survived had I known as a child, how long I would have to wait, but my hopes were forced to stretch a little each time a new delay hit. I managed to hold out.
Everyone on waiting lists nowadays, I just hope you all are able to have the support and find the strength to get through as I can only imagine how torturous it must be.
I think we can all agree on one point, the waiting times in the NHS GIC system are a national disgrace, in addition the callous, Overly bureaucratic and rigid process which is clearly not patient focussed is disgusting
While there is excellent work being done by the Indigo Project Pilot in Greater Manchester, it is of no help to those of us outside the catchment, so this creates even greater inequality, and leaves thousands of people with no support whatsoever
Speaking personally I have only received an acknowledgement of my referal, but no indication at all as to when I may expect my first appointment, at 54 the sands of time are not on my side, and I am far from being the only one in my age group so affected