Members of the GenderGP team recently visited Safe Haven in Cornwall for the first ever GenderGP Roadshow. We met some incredible people who asked some very interesting and insightful questions. Here’s a transcript of what was covered.
We are currently planning the roll out of more roadshows so, if you would like us to visit your area, and you have a trans support group who would be willing to host us – get in touch: email@example.com
Moderator: What is the difference, if any, between puberty blockers and adult blockers?
Dr Helen Webberley: Puberty blockers, hormone blockers, adult blockers, they are exactly the same. It doesn’t matter what age you are. Basically, there are two things that you have to do when manipulating your hormones. You have to reduce your natural hormone, whichever the one your body produces naturally. And then you have to increase the hormone of the gender with which you identify. Women produce oestrogen naturally from ovaries. If you don’t have ovaries, you have to get your estrogen from somewhere else. Men have testosterone naturally from testicles. If you don’t have testicles, you have to get it from somewhere else. You’re just reducing the hormone that you don’t need, and increasing the other one that you do need. As for the blocker, it doesn’t matter if you are a child or adult; it is a medication that reduces the hormone that you don’t need.
Moderator: Is it ever too late to start taking HRT?
Dr Helen Webberley: Personally, I think it is a choice. Taking HRT means switching your hormones from the one you were given at birth to the one with which you identify. Is it ever too late to come out as being trans? Is it ever too late to switch your hormones to the ones that fit your gender identity? Is it ever too late to do anything that will make us live our lives more happily and more comfortably? Socially, I say no. Medically, I say no.
Marianne Oakes: Can I add something there? The reality is we are all on a journey, and our paths take different routes. People, for whatever reason, at age six, seven, eight, nine, or ten, will suddenly come out and start talking about this. Other people, depending on the cultural environment and the society and sociological environment, will take a different path. And all we are ever trying to do is function in the world. And when the time is right, we will arrive there, whether it’s age six or sixty or beyond. That really is the right time to start HRT; when our lives are in the right place.
Moderator: Is it preferable to have some counselling before you start hormones?
Marianne Oakes: I’m going to say yes. I’m biased because I do counselling. But it’s not mandatory to have it. If you’re going to enter counselling because you feel like you should, not because you want it, it probably won’t work. You’d just be wasting your money. The biggest fear I have is that people enter counselling because they want somebody else to take responsibility. Counselling is about taking the responsibility yourself and affecting change. If you have something that is holding you back or if you’re entering therapy thinking that medication alone is going to answer all your problems, then you’re going to get a shock at some point. What I’ll say is come when the time is right. If you come when you have a bad experience, you might not access counselling when you need it. You should know yourself. If you need it before, maybe you could. But if you don’t feel it’s right, then don’t enter counselling.
Dr Helen Webberley: I’m not disagreeing. I think counselling is useful for anybody who’s been through something difficult, and they want to sound off to somebody or get help. It doesn’t matter if you’re trans, cis, or whatever the issue is that you need to talk about. But to force someone to have counselling to get to the next step—how is that going to be productive in any way? GenderGP would love for everyone to have a counsellor in their back pocket, and you’d pull it out with your phone any time that life, or your journey, is tricky. Trans or not, it doesn’t matter.
Moderator: How long is the process from contacting GenderGP, to diagnosis, hormones, surgery?
Patient advocate: On average, ballpark, around three months. For some people, it is much faster. And for some people, it can take a little longer to get things like blood tests. There can be a little bit of to-ing and froing from GP surgeries. Did you say, to diagnosis?
Moderator: There were three stages. They’re interested in from initial contact to diagnosis, so you may want to address these first.
Patient advocate: First of all, we don’t operate from a model of a gender dysphoria diagnosis. That’s old-fashioned. Unfortunately, that is the way that the NHS clinics in the UK are operating. We work on an informed consent model, which is that you are the best people to know who you are, and what you need. We will give you all the information. We will inform you with what any treatment will do to your body, and how that will affect you. But I personally don’t think—and Helen and Marianne are the same—I have the right to tell you that you are this or you’re not this. So we don’t operate on a diagnosis of gender dysphoria. I don’t know why we’re still doing that in the UK. That’s the first thing.
That said, we do have to do some assessment. We have to make sure that you are fully informed. We’ve got to make sure that the treatment we advise is right for you. Some form of assessment process has to take place, but that’s not a diagnosis. It’s informing you of what treatment is out there. I would probably say two to three months on average.
Moderator: This particular person is also interested in surgery. What is the program, in terms of length.
Marianne Oakes: It depends what surgery you’re talking about. If you’re talking about top surgery for trans guys, you can get it quickly. But if you’re talking about some kind of bottom surgery, for both kinds actually, probably around two years. I don’t know exactly.
Moderator: Can you clarify GenderGP’s role in terms of surgery?
Dr Helen Webberley: Surgery is tricky because ultimately, we have to find a surgeon who is willing to do an operation that you want to have done. And we’ve got to try and persuade that doctor. And that doctor, that surgeon, will have their own rules. Some of them will stick very closely to the WPATH guidelines, which say that you have to have had a real-life experience and been on hormones for two years and all the rest of it. But two years—why two years? When you have a lifetime of experience as a trans person, and then you’ve been on that period of discovery for 22 years, and now you’re there, why make you wait another two years. But anyway, that’s by the by. Surgeons have their own riles. Our job is to give you whatever you need to facilitate that. There are some rules out there. We haven’t created them, but we want your journey to be easy. So if the rules out there say that you have to have hormones for at least two years, and you have had to have life experience for two years, and you need two letters—we will get you your two letters. We feel that you should be in charge of your journey. If you feel that you want the surgery, you’ve got the information that you want, you know that’s going to happen, someone’s there to explain what that surgery might do for you, how it fits with what you want to do with your life. It’s your journey, your time frame. But the surgeon may have different ideas.
Moderator: Is counselling required for a diagnosis, again using inverted commas, how many appointments are needed?
Marianne Oakes: Our process is to build a case file. And what we want the case file to demonstrate is the medication we want to prescribe is right for you. The counsellors are trained in gathering this information. When we do the report after that session, it’s not a counselling session. We’re not exploring things that you don’t want to explore. We’re just going to gather information. We’re trained to reflect your story properly. You are actually only required to have one. All the other sessions we have are not a prerequisite for HRT.
Dr Helen Webberley: I’d like to take a minute to explain how the process works. So basically, we have to gather information, and then we share the information. So we gather information from you as an expert on your own body and your own feelings and your own gender. We gather that by what you tell us in your emails, what you tell us in your questionnaires, and what you tell us in this information gathering session that Marianne is talking about. While we are gathering this information from you by you, the expert, we are sharing information with you. So we tell you this is what hormones might do for you, this is what that surgery might do, this is how you can change your passport; all the information that we might have that could help you. So it goes both ways. At the end of it all, we present this information to the doctor. We say, “This lady or this man wants to start treatment to swap their hormones over. This is the information we’ve gathered. Have a look through, and see whether you think it is safe from a medical point of view, and right from a social point of view for this patient.”
Then the doctor either will say yes, or they will say, “I’m a bit worried about this medical bit. Should we do something about that?” So it’s a way of swapping information between expert medical people, and expert people in their own personal body. So you don’t have to do anything to get the help you need. We share information, and if something comes up that rings alarm bells, we ask if we should explore that before we go to the next stage, whether it’s a social issue or a medical issue.
Audience Member: It feels like waiting for surgery is stretched as far as possible while information is being ‘gathered’. You think things are progressing, eventually you get a second opinion, then you essentially get a surgical date, where the doctor goes to say, yes, we will offer you a surgical appointment. And then the GIC says bye, and the GP is asked to look after you. The pinch point is surgery, and the rest is just sitting it out.
Dr Helen Webberley: I think you’re right. And with that, everyone has to go through the same process. Whether you’re forty-five and have known your gender from the age of three, and you have no issues with your gender, and you need the medical help to swap your hormones and the surgical help to make your body fit better. Or you can be eighteen and really struggling with it, and you don’t know what to do. It seems that everyone goes through the same process in the NHS. One of my trans friends on twitter the other day said that they were waiting for four years and they had finally got their appointment at the GIC. She’s been living as a woman for the last twenty years, and now she’s got to start her assessment process to be given a “diagnosis” of being transgender. And yes, she may be on a waiting list for surgery. The trouble is, from your point of view with being experienced with the NHS, is what a waste of time. Those appointments could be given to somebody who says “I’m so scared I don’t know what this means. My wife doesn’t want it, and my boyfriend doesn’t want it, my kids don’t want it. Can you please help me through this?” why don’t we give that time to those people who need it?
Audience Member: I think to pick up on the point of why the NHS is giving a diagnosis, it’s purely for the gender recognition certificate. To get that piece of paper and have those people say yes.
Patient advocate: I think you’re right. I think that’s the way it is. Unfortunately, we’ve got to change that.
Marianne Oakes: Personally, I think there is a grip as a specialist service. And there’s a core within the NHS that are doing very well and are getting status by using this model. But it doesn’t serve the patient; it serves the doctors. And that is what I think is fundamentally wrong. And that’s why we get NHS doctors attacking us, because they’re defending their patch.
Patient advocate: I am a strong advocate of the NHS. It’s great. But for gender, it is not great. Unfortunately, I think there is a core that seems to have a real arrogance that this is how it is, and this is how it is going to stay and how dare you even question it? That is as far as I can see as somebody who knows the NHS very well.
Marianne Oakes: Also, there is a lot of attention on children, and that has set a paralysis on gender care from the children through to the adults. They say there is not enough research, which angers me, because they’re doing it wrong. Why isn’t their research? They’re just not bothered because they didn’t care. A few people are coming through, and then suddenly there is this surge, and the rabbit is caught in the headlights. And we don’t know what to do. The media is causing a lot of problems.
Audience Member: I absolutely agree with you. The Tavistock is far too cautious with their transgender care for children. But they still get it in the neck from the media that they’re too quick.
Dr Helen Webberley: The Tavistock—we think they go too slowly. The children aren’t getting access to puberty blockers and hormones in time to spare their mental health. But the media and everyone else is saying that they are going too quickly. It’s tough for them, but my counter to that is that it’s not easy being a doctor or a nurse, or to be in a position of responsibility. But your patient is the person you need to listen to, not the media, not those who deny that trans people exist. The patient is the problem, and the reason why Tavistock can’t retain their staff; who could possibly work in an environment where all you see is distressed children coming through, waiting for their medication to help them stop this terrible puberty, and they are told “maybe next time you come in six months’ time.” Who could work in that environment? I could not work there.
Moderator: That leads me very nicely to my next question. Obviously, many people going through this process suffer from depression. With GenderGP, does a diagnosis of depression impact access to hormones?
Patient advocate: No. absolutely not. It doesn’t. Why would it? It’s not easy being trans. And to suffer from depression and anxiety is, unfortunately, because of society, part and parcel of being trans. It’s unfortunate, and it doesn’t have to be that way. My own daughter has an obsession with Marianne. I’m a bit of a tiger mother; I pushed to get the treatment at the right time. She doesn’t suffer from gender dysphoria. She’s just a 13-year-old girl. That’s it. And I think you were quite surprised that she hasn’t got any of that. Why can’t it be like that for everybody? So no, you don’t have to have depression or any other psychiatric condition. It wouldn’t be a barrier.
Audience Member: I was diagnosed with PTSD and anxiety. Would that be a barrier for me?
Dr Helen Webberley: No. it’s completely unrelated to a gender problem. If I had a penny for every time someone—and two people today have told me—that when they get the care that they need, the depression goes away, and the depression tablets aren’t needed anymore. And the amount of time I’ve heard that story—and whether your depression is from your gender problems, it’s not your gender causing the problems, it’s the difficulties surrounding it that can be giving you depression. Or whether it’s for a different reason. Actually realising your identity and moving forward with your life can be incredibly empowering. And suddenly, all that psychiatric medicine can start going in the bin. For children as well. The number of times that a mother has told me that her teenager has become a recluse who will not come out of their bedroom, who will not speak because their voice sounds strange, spends their whole life in an animation on computers on Cosplay, and no one knows that they are a girl or an image in their bedroom. And then they start the treatment, and they get their blockers, and they go downstairs. They join the family meal, and they go out to play and go back to school. And it’s so heartening, really.
Marianne Oakes: I was going to say that dysphoria manifests itself differently for different people. You will get a trans person that will go see a doctor with depression, and they’ll be given medication. When actually, it’s not medication, but it’s the dysphoria that needs dealing with. I’m not qualified to say if they’ve got depression or not, but time and time again, trans people say,” The doctor’s not giving me hormones, they’re giving me antidepressants.” I’m not a doctor, but the hormones would probably be doing less harm than the antidepressants.
Patient advocate: The problem is that with psychiatry and with psychology, there is not a definitive test. You cannot do a blood test and say that you are suffering from depression or you’re suffering from gender dysphoria. So it’s always a subjective thing on behalf of whoever is doing the assessment. Let’s say that you can’t have access to treatment because you have got PTSD rather than gender dysphoria—that’s subjective. That’s not right. You can’t base things on that.
Marianne Oakes: Why can’t you have gender dysphoria and PTSD? And we can deal with the gender dysphoria, and they can help with the PTSD.
Marianne Oakes: Just to be clear as well, there is something that is happening at the moment. There’s a thing called minority stress. So anyone who lives a different life, whether it’s in the LGBT community—ethnic communities get this—but it is when we are surrounded by a society that isn’t in tune with how we are. Some of the symptoms of minority stress are actually very similar to PTSD.
Moderator: Hopefully, the answer to this will already be apparent, but do you have to present in a certain way to use GenderGP services?
Dr Helen Webberley: I’m not going to answer that question. Anyone here who thinks that they have to present in a particular way to get their psychological support or medical support from anyone on our team?
Audience Members: No.
Marianne Oakes: We’re glad you have clothes on!
Moderator: Can we help with fertility storage?
Dr Helen Webberley: Fertility storage is a real problem, unfortunately. There are a few medical conditions where you need to store your gametes before you start treatment. So if you are having treatment for cancer, and you’re having chemotherapy or radiotherapy, you’d be advised to store your gametes, either your eggs or your sperm, before that treatment. If you’re having any surgery that might affect down below and affect your testes or your ovaries or your tubes, then you’d be recommended to have fertility storage before your treatment. If you have hormone switching, then you would be asked if you have thought about having children in the future. You’d be recommended to have fertility storage. Facilities for that in the UK are very tricky. We can help you as much as we possibly can, but we can not ask that clinic to give you an affordable option to store your gametes. What I will say is, if you were assigned male at birth, it is much easier. And do try and do that. If you were assigned female at birth, it’s much trickier. And much less successful in the future. But let us also say that just because you are switching your hormones does not mean that you are definitely going to be infertile from that day. We’ve seen lots of people in the media who have been willing to share their stories of successful pregnancies both ways: either using that trans person’s sperm, or that trans person’s body and eggs to go on and create a successful pregnancy. Although we are scared about infertility, not every trans person who switches their hormones will immediately become infertile. But storage is tricky. If you were assigned male and birth and you want children in the future, do try and store your sperm if you can. And we’ll help you as much as we can.
Moderator: This one is for Helen: how can we persuade GPs to prescribe hormones and work with GenderGP?
Dr Helen Webberley: I think what we might need to do is scare GPs. If you went to a GP and said, “I’ve got a problem with my elbow,” and your GP said, “I’m sorry, but I haven’t done elbows yet,” we would laugh. But if you went to your GP and said “I am trans, can you help me with my hormones?” and they say no, that is acceptable. GPs should know a little bit about everything. And if they don’t know they should refer you to your hospital consultant. That hospital consultant— local hospital, not specialist—should know a little bit more than your GP. If he doesn’t, he should go and get himself some education. If your GP doesn’t know a little bit and refuses to learn, then they should be held accountable for it. This is how we hold these people accountable. Actually scaring them, and saying, “Look, if you’re not prepared to do a little bit of searching around and education so that you can give me the basic level of care as a trans person, then I am going to complain about you, and I am going to take this further.” You have rights to healthcare in the UK. None of you should have to pay for your healthcare in the UK. We don’t have that system.
Audience Member: What are the chances of success if you make a complaint?
Dr Helen Webberley: We need to keep at it. Your complaint needs to be in writing to the practice manager. If you don’t get a satisfactory response to it, you need to go again. And until we start doing that more and more, that’s one way we’re going to effect change.
Audience Member: Are GPs autonomous? Can they have different policies in different surgeries? I mean, my GP is very supportive. I spoke to somebody else whose GP said no.
Dr Helen Webberley: They’re not allowed to say no. It’s just wrong. The basic rule that every doctor has to have is—you have to make sure that your skills and your knowledge and your attitudes are sufficient for the patient that you are caring for. You need to have a bit of knowledge. To say, “I don’t know about transgender health, and I am completely unwilling to learn,” is completely unacceptable.
Audience Member: That’s really common. We have people contacting us saying they go to their GP in Cornwall. We have a GP in Cornwall who doesn’t think transgender is a thing. At the moment, in Cornwall, we’ve got a real problem. We’ve got one GP that we’ve been told actually doesn’t believe in transgender being a thing, reported the mother. They frightened the child and made all sorts of noises about parents being influential. We’ve got a trans lady who is very forceful. She got the guidance for GPs, and highlighted it—she printed it out and highlighted it all. She went and saw her GP, and put that on the table, and she got him to the point where he was so scared that she was going to report him for not prescribing that he did. And that’s the only success we’ve had. And it’s causing us such frustration.
Panel Speaker: I’ve started to advise patients to get that from GPs now. They should ask the GP at the appointment to write in the patient’s notes the rationale for why they are not going to help. I think GPs are much more reluctant to write down what they say that can be evidenced, than just saying something that is face-to-face. I advise people that if they do get that response, that they should say that they want it written in their notes.
Audience Member: My GP did a blood test, but he didn’t do any prescribing, purely because “it’s my license”. That was his excuse.
Panel Speaker: In that case, I’d be saying, “I need you to write that in my notes that that’s the reason you’re refusing.”
Audience Member: My GP surgery—I discovered recently through this app that you could log on to view your own notes and medication. I don’t have an issue, but I just recently discovered this. So if people have that facility, if they want to know what their GP is writing, it might be of use.
Dr Helen Webberley: I think what’s really important is that if you don’t feel like you are getting the healthcare that you deserve and that is right for you, then you need to ask whoever it is who is not giving you your care to write it down in your notes. But you must write a letter explaining that you don’t feel that you are getting what you want. If the response is not adequate, you write again. Again, it can be quite scary doing that. No one wants to do that. But until we do that, we won’t see change.
And also, if your GP just shrugs it off, where do you go next? If the GP is saying, “We would like to help you, but it’s the CCG that’s saying no,” Who do you write to then? And perhaps we can do some work of making template letters, and that sort of hierarchy.
Audience Member: Using the information that the lady used actually to go somewhere and persuade her GP to prescribe, we were thinking of trying to put together some template letters of what to write to your GP to make noise and be courageous. If your GP says “you keep making noises and I’ll stop seeing you,” I don’t think they can do that—but that frightens people.
Dr Helen Webberley: And you can say that to her. Could you write that down in the notes? That if I keep asking, you are not going to see me? Can you put that in the notes, please? It’s very easy for me because I am a strong woman and I can say that, and I’ve got the knowledge. I know it’s hard, but we mustn’t let these people walk all over us.
Audience Member: Are HRT blockers actually licensed for transgender care?
Dr Helen Webberley: Quite a lot of doctors are saying, “I’m not going to prescribe that for you because it’s not licensed.” Very quickly, I’ll talk about the medicines that we use. Oestrogen, we have a patch or a pill to feminise your body, is exactly the same oestrogen we use for women who have gone through the menopause that aren’t ready to go through it yet. It does have a license for menopause. It doesn’t have a license for transgender. But if a drug doesn’t have a license, as long as we know it’s safe, it would be okay to use. We do know it is safe, and the GMC has written it down very clearly that although the medicines are unlicensed, we know they are safe to use in that situation, and therefore that is no excuse. So the medicines we use are ones that we use in general practice on medical conditions. None of the medicine that your GP is being asked to prescribe you is completely brand new. These are medicines that they prescribe for other people every day. The medicine is too scary, that’s not an excuse. The medicine is unlicensed, that is not an excuse. And again, we should work on template letters for people who are being given that excuse, because it’s not an excuse.
Audience Member: I was going to say that you are entitled to take an advocate to your appointment with you. So if any of you struggle with your GP, and get in contact with Safe Haven, we can probably arrange for an advocate to go with you, who will know what to do when your GP is being difficult.
Marianne Oakes: When I talk to people when they say I’m going to talk to my GP and ask them about bloods, I encourage them not to go in there and ask. I encourage them to go in and tell them that you are being forced to come out of the NHS and you want them to support you, even if it’s only bloods. Ideally, there would be a prescription as well, but the NHS is letting you down. We tend to be, as a community, very subservient. We’re being made to feel grateful that the NHS see us. And we’ve got a right to be seen and to be treated equally like any other patient.
Dr Helen Webberley: Book an appointment for your blood test, and sit there until they put the needle in.
Audience Member: My GP referred me to your clinic.
Dr Helen Webberley: We would welcome anybody.
Moderator: Can we talk through costs? What’re the initial costs of using GenderGP? And then the monthly costs.
Marianne Oakes: The first thing to say—and we’ve talked to people in the early intervention sessions about this—and it’s really difficult. Until we know you, we’re not going to know exactly what medication and we don’t know what your income levels are. What we can say is that if it is standard, we can tell you what you need to do. We can tell you how that could be roughly broken up. If your doctor doesn’t give you any support at all, we’re going to do your blood tests for you. You’ll need to be budgeting around £1,200 a year. That’s broken down into — and it would certainly be cheaper as treatment because there are some one-off payments that you wouldn’t need to pay again. That’s broken down into an initial payment of £195. And then you’ve got the information gathering session, your first bloods, which are about £150. Then you go on to the monthly subscription and prescription. Depending on what the prescription is, that can affect the £1,200 pounds. There are no hidden costs. The only big thing will be if you have blockers.
Dr Helen Webberley: The blocker injections, yes. What we try to do is, if we can persuade your GP to do your blood tests and prescribe the medicines, that is the majority of the costs. That’s what makes it affordable. If your GP won’t help at all, it’s trickier. The best person to answer this question at all is Katie, so if you want a proper breakdown—because we don’t tend to deal with money so much—just email and ask Katie. And she’ll send you the document we’ve got which explains it all. There are things like blood tests which are expensive to be done privately, and I want to say we don’t get that, the laboratory gets it. If your GP will help, it makes it much more affordable.
Moderator: So that would be firstname.lastname@example.org if you want a full breakdown of costs. That would be generally speaking because they don’t know your particular case.
Marianne Oakes: The other thing to bear in mind is if you’re a student, or you’re on benefits, we will discount you as well. So that’s a full price there, but it can come down. Don’t think, “Oh well, I definitely can’t afford that.” it’s always worth talking, and we will do everything we can to make it as affordable as possible. Up front, there is an initial payment of your information gathering, blood tests and all. It could be about £450 pounds in the first six weeks. And then you would be going on to your monthly payment.
Stop being so nice. Go and make an appointment with a practice nurse, take a letter from us which says “this patient needs to have this, that, and that, please do it”. Give it to the practice nurse. If she says no, get her to write down why. Be a little forceful about this because that’s the way to get those blood tests done. And about the medication, once you’re on your medication and it’s on your file, you should be able to get a repeat prescription for that medication.
Audience Member: I think that’s something worth thinking about. I was on four different prescriptions. I’d go on to the yearly payment. It’s a lot cheaper. If you are on a budget, there’s something else to bring the cost down.
Audience Member: When you see your GP, when you come out you go straight to reception, and you tell them they’ve told me to make another appointment with them in whatever time, and then you get to see the same person twice or three times or how often you want it.
Audience Member: Earlier you talked about getting trans women to the levels of oestrogen of a cisgender female. Cisgender female levels are pretty broad. Where would be the therapeutic dose?
Dr Helen Webberley: So for oestrogen, we would want it to be between 300 and 800. And again, if you want to email us, we’ve got a chart that shows where the levels should be. Oestrogen is tricky. If you do a blood test—this is for cisgender or someone on hormone replacement therapy—on Tuesday for your oestrogen, it will come back at this. Nothing changes and you do your oestrogen next Wednesday, and it’s completely different. I don’t know why it’s just the way oestrogen is. It’s a broad range. Testosterone is a bit easier to work with. But if you’re on HRT and your levels are too low, if someone is giving you medicine to drop your testosterone, and then they’re giving you estrogen, but they’re not giving you enough, you are not going to feel well. Hormones make us feel well. And if your hormones are dropped, you’re not going to feel well. You’re not going to feel physically well. You’re not going to feel mentally well. GPs who are a bit scared and will start you at half a patch to get you going are not doing you a favour. We need to get your hormone levels up to a female level.
Audience Member: And what about progesterone?
Dr Helen Webberley: We don’t measure progesterone. In America, they use progesterone a lot, and they’re not scared of it. Our NHS GICs here do not use it at all. There is no evidence. There is no research. But actually, what we’re seeing from people in America is that it’s good stuff. It’s good for breast development. It’s good for psychological feeling. If you think that you’d like to add progesterone, we feel that the risks are very low, if any. We think the benefits are quite good in terms of breast and emotional aspect. So, we’re a big fan.
Audience Member: Just going to go back to the blood tests.
Dr Helen Webberley: If you ask permission, there could be two answers: yes or no. If you go and say this is what I am having done, it’s a little bit harder to challenge. So let’s get our banners out and be forceful.
Audience Member: I have a question. This is very specific for GenderGP and where you’re going with the future. In Europe, testosterone is not a banned substance, but it’s a controlled substance. How do you see that working if we do leave the EU?
Dr Helen Webberley: People worry about the fact that testosterone is a controlled drug. I won’t get too deep in the nitty-gritty, but there are four levels of control. Things like morphine and the anaesthetic drugs, those are one. Two people have to sign in. You have to sign it in and out of a book. Testosterone is class four two. It is controlled because, in the day, some bodybuilders would use it. It’s got some control over it. But it’s a very low control. At the moment, I don’t think exiting the EU will have an impact. If it does, what we will do—at the moment, our EU doctor, her prescription goes to our UK chemist, the same chemist that we’ve always used. So there is no change. If that UK chemist is no longer allowed to accept an EU prescription, we will get a new chemist that can then provide us with medication. Over the history of genderGP, we’ve had to overcome quite a few hurdles. This is not one I am worried about.
Audience Member: I was just wondering what kind of long-term effects might be for HRT.
Dr Helen Webberley: People are often worried about side effects. What I want to say to you is that we are switching your hormone profile from one that your birth-assigned body would have given you to the one that the birth-assigned body of your neighbour, who happened to be born in that gender identity has. Switching your hormones—there’s no problem. You can have high oestrogen and low testosterone as a female. You’d have the same hormone pattern that any cisgender woman has. You have the same risk of blood clots or breast cancer or any of the other female illnesses that oestrogen might contribute to. If you’re a man and you’ve got high levels of testosterone, yes, you’re going to go bald. It’s your genetic makeup. Whether you were assigned female at birth or whether you were assigned male. Men tend to live less than women, and that includes trans men. Trans men who have a testosterone-rich environment will probably have a shorter lifespan than they would have if they stayed as their birth-assigned female. You are swapping your hormones to the pattern that the other half of the population already has. Sometimes the medicines we use to do that might cause risks. But actually, they’re very safe. We’ve been using them for a long time. There are only four. There’s the blocker injection, safe as houses. There’s finasteride. We’ve been using that for prostate problems in men, safe as houses. Spironolactone, not my favourite, sometimes we use it. Keep your eye on your kidney blood tests. Safe as houses. I don’t like Bicalutamide, so we tend not to use that. So the ones we do use, I feel safe with. If I were a trans person, I would switch my hormones using those medicines.
Audience Member: My GP put me in touch with a consultant. I’ve been on a waiting list for 12 months now. I’ve recently met someone in the medical profession who said I’m too old. I am 63 this year. I am diabetic.
Dr Helen Webberley: There are lots of 63-year-old women who are diabetic who have oestrogen hormone because that’s what their body gives them. Why are you different to that? And too old? Too old in whose eyes? I wouldn’t let someone else guess what is going to happen in your medical journey. But maybe be prepared. My answer on the diabetes would be that many cisgender women have diabetes and who have oestrogen because that is what their natural body gives them. You are just asking to be given the female hormone pattern just like any other 63-year-old woman.
Marianne Oakes: I think, to sum up, it is very safe, the medication. We do need good quality healthcare. Truth of the matter is we’re trying to do that. We’re being battered. But that’s what we’re offering. We’re making sure you’re going to be looked after and given the right advice, informed consent, and know what you’re going to be entering into. Good quality healthcare is what you should be getting from the NHS.
Patient advocate: I think the other truth of the matter is that GPs are getting scared. They’re getting scared of litigation. They’re scared of getting sued for something that they do wrong. So it’s easier for them to do nothing than do something. What I think needs to happen is people need to start suing for being made to wait, and the damage that has caused.
Audience Member: It’s been twelve months since I’ve been on a waiting list, and nothing since. And you don’t know if you go up or down.
Dr Helen Webberley: It’s a waiting list for the gender clinic, is it?
Audience Member: Yes.
Dr Helen Webberley: Keep on that waiting list.
Audience Member: I think like what you said, you’ve got to get some bravery. The English way, we’re so polite, aren’t we? You’ve got to be a bit less passive.
Moderator: but it’s also that habit gives momentum. Once one person does it, two people do it. Three people do it. The more people actually stand up and say that this isn’t right the more likely we will be to affect change.
Marianne Oakes: What we’ve come to understand in the UK is that the model of care of the NHS is an outdated model. It goes back, if my understanding is correct, to 1966. We set a hierarchy of trans-ness. For example, if you wanted healthcare as a trans woman, you had to be attracted to men. You had to want to be with a man. Now, they’ll argue that that’s gone. But actually, it hasn’t. The people that are offering the service that comes from the top, and it dribbles down. This idea that there is a level of trans-ness that you need to achieve. What that’s also done is fed into the community. And the community then starts trying to convince that “I am at that level” because you’re trying to get help, and you’re caught in this cycle. The one thing I say to anybody that comes to GenderGP is, “Tell us the truth. Don’t think you’ve got to prove anything.” We can tailor the healthcare that you need. You go to the NHS. You tell them what they want to hear.
Audience Member: There’s a narrative, and you have to fit through it.
Marianne Oakes: Just so you all know, I went through NHS care. I was refused treatment for 12 months because I didn’t fit their criteria. I went in, belligerently, and told them the truth. They’re now talking about surgeries for me. I’ll be honest with you, if I can avoid the NHS having surgery, I will. However, they’re insisting that I change my name legally. And for different reasons, I don’t want to change my name legally. I don’t have any dysphoria regarding my old name. And I don’t want somebody telling me that I need to do that to be female. That’s what we’re trying to fight against. Remember, there’s a cultural thing going on here as well where the trans community is concerned.
Marianne Oakes: Can I just make a point, though? Is anybody else under the NHS care here? I don’t know how many appointments you’ve had to go to, but the Laurels, which offer services in Cornwall, it’s a drive and a half to there. It’s not like going into Charing Cross. At some point, I was going to Sheffield, which is far too far for me. The two-hour train journey is a forty-minute drive. And I was going over there twice a week at one point.
I was having speech therapy, that obviously didn’t work. [Everyone laughs] It didn’t work because the woman didn’t know how to do it. I was in psychotherapy. They wouldn’t let me have treatment, so they said I had to have psychotherapy. So it was twice a week. You’ve got to be careful. You shouldn’t have to move. Obviously, we do it if you can get on the list quicker, but that is one other problem as well. You have to be aware of that if you’re going to move. It’s a disgrace that you even have to consider it.
Moderator: We’re coming up to our five o’clock point. I just wanted to ask if anyone had any final questions.
Audience Member: we’ve been talking about lots of things, on how this is hard for all kinds of reasons that could be dealt with that aren’t dealt with. And for me, a lot of the time, it feels like one of the big resources available is all of us in this room. I just wondered what you thought we and other groups like this could do to help push some of those barriers.
Dr Helen Webberley: I’m glad you asked that question, actually. I want to give thirty seconds to explain to you how the NHS healthcare works. I mentioned this briefly before. You want to go see your GP with your small problem, and they should be able to do it. If that’s too big a problem for your GP, your hospital consultant should be able to do it. If it’s too big for them, then we have what’s called tertiary centres. Not every local hospital will do a heart transplant. We’ve got about three centres in the UK that will do heart transplants. You don’t need to do too many of them. So those very specialist services are for rare conditions. In the olden days, being trans was a very rare condition, so they set up these very specialist clinics. They’re supposed to deal with under 500 cases a year. These days, there are many—I don’t know what the number is—there are thousands of people who need healthcare. So the specialist clinic model is never, ever going to work. And the thing that distresses me the most when I am hearing about group meetings and advocacy and fighting and campaigning is that they’re saying, “We need more people in our specialist gender clinics.” Actually, what we need to be doing is pushing for your healthcare to be provided in your local hospital, and by your GP.
That is what I think we should be pushing for our vision of the future. The vision of the future is that your GP and your hospital consultant are no longer allowed to say “ I don’t know anything about this.” We have to push for that change. That’s where we need to focus our ideas. So when I read in the media that “we need more specialists”, I think that we don’t. We need to save those specialists for the very tricky cases. And the easy stuff should be done—I’m a GP. I read the books, and I know what I’m talking about now. It’s not hard. We went to medical school. We trained. We’re supposed to have big brains that can cope with information. It’s not hard. And we shouldn’t be allowing it anymore.
Marianne Oakes: One of the things that is really apparent is that any doctor who is brave enough to help trans people gets reported to the GMC. The example that the GMC is setting is that if you dare go there—Richard Curtis only dealt with adults, and they were driven out. there is a little part of me that’s got empathy for these GPs because the message that is being given to them is “Don’t go there.”
Audience Member: Why is that from the GMC? What is the reason behind it?
Dr Helen Webberley: Fear. Everyone is scared. What if we get everyone in this room—I don’t know how many trans people are in this room, but let’s say that everyone is—as part of your journey, to switch your hormones, and then in five years one of you said, “Look what you’ve done to me.” Either, “My voice is broken,” or, “What are these things on my chest.” That makes us all scared, so every single one of you in this room won’t get that treatment in case one of you changes their mind. That’s just grossly unfair to the rest of you. And no, we cannot put up with that. The 499 people who didn’t get care just because the one, that’s not fair.
Audience Member: This top level that we’re talking about. Are they not making themselves liable?
Dr Helen Webberley: Yes, yes! The European Court of Human Rights—I’ve written to them, and I’ve sent about nine examples of how I am a doctor who has treated trans people and look at the trouble I’m in. Compared exactly with—very clear comparatives, where a doctor didn’t help a trans person, and they were not in trouble. We need those comparators. We need to say that that person went to a GP and they needed medication for their treatment and they got it. I went to my GP. I am trans. This is the right treatment for my condition—if we call it that—and I didn’t get it. Is that doctor going against my human rights?
Dr Helen Webberley: We need to write to those high levels. We need to write to the European Court of Human Rights. The Royal College of General Practitioners has recently released some guidance, and it’s ridiculous. And I wrote to them and said this is ridiculous. The Care Quality Commission—we told them what is happening at the Tavistock Clinic, and they wrote and said, “Oh no, we don’t know anything about that.” and we’re pushing. We said you need to go and look at what’s happening. You need to go see patients. We need to push. We need a big voice. Anyone who has got a big voice and enough energy and strength in them to keep fighting—let’s do it. Let’s make this happen.
Moderator: Because this is where Helen is spending all her time right now. If you look on the website on the advocacy page, there is example after example of letters that are written. But the problem is it’s Dr Helen Webberley writing them. Oh, it’s another letter from Dr Helen Webberley. They can ignore Helen, but they can’t ignore the people.
Audience Member: Should we as patients be writing?
Patient advocate: Yes.
Marianne Oakes: To go back to the original question here, of what groups like this can be doing: get educated. Understand the system, because it’s great having us here today, but you’ve got to go and tell. If you are members of other groups, you should go to the website and see what’s happening. Transgender care has to change. They’ve not got the professionals to maintain the old model. This is causing trauma and distress. It needs to be pushed. The irony is, chances are they might not need us (GenderGP) if we get over that tipping point, and yet we are the ones pushing for it.
Marianne Oakes: Finally, the other thing we’ve got to understand is if we could get to talk to other people and educate, that would be great. But the truth of the matter is, many people are supportive of private care models which are based on the NHS where the private care works in the NHS. They benefit from the waiting lists. And that hold has got to be loosened; it will only get loosened by us. It’s not going to get loosened by the NHS.
Dr Helen Webberley: Two other things that we’ve been doing—we have a petition if anyone hasn’t signed it. We are campaigning for interim solutions. While we are in this work waiting for the future to come, we want something to put in place now. We’ve got 13,000 signatures. A few more wouldn’t hurt. And then we could move that forward.
The other thing that you may be aware of, back in the eighties, when people were given blood products, and they were infected with HIV and hepatitis B. Now, 30 years later, these cases are going to the courts and people are getting compensation. Today’s people who ask for the healthcare that should have been available to them that wasn’t given to them even though it was the right treatment, we need this scandal to happen, and we need it sooner.
We don’t want to wait 30 years for the scandal to happen and for the compensation to come. We don’t want to suffer. We need some court cases. We need some proper litigation. People who are brave enough to go, “No, no, I will not be knocked back. I am going to sue you.” We need to test cases in court because that is really scary for doctors. Much scarier than doing a blood test is going to court.
Audience Member: Who can we write to these strong-worded letters?
Dr Helen Webberley: I’ll tell you what, we’ll make a pack.
Audience Member: As a minor, how can I fight for the right to pressure GPs to be able to sort out blockers and hormones.
Dr Helen Webberley: You are the future of tomorrow. We really believe that. We’re very lucky in this country. Even if you are a minor, you have the right to get the healthcare you need. I don’t know if your guardians are here, or even if you don’t have parental support, you are allowed to get healthcare for yourself if you have enough brains, which I am sure you have and are competent. You can get healthcare for yourself. Blockers are really important for a young trans person who knows their identity. Blockers are really important to stop that puberty happening. You and your parents or whoever looks after you are allowed to get treatment at the right time. We need to fight for it to happen for you. And if you want us to help you find it, then we will, definitely. We heard a lot of adult voices, but here in the UK we really need to hear your young voices as well. Anyone who’s got the bravery to take a microphone and speak at something like this. It is brilliant. Let’s hear those young voices as well.
Marianne Oakes: I genuinely believe that we’ve got to get proud of trans. We have to stop seeing trans as lesser. I like to be perceived and received as female. That’s who I am. But we’ve got to embrace the trans because one of the problems we have is that people are frightened to speak out because it’s going to out them as trans. And we protect the young children, but the Achilles heel in all of this is if people can see young trans kids getting on with their lives, getting into school, having all the aspirations of a child of their age, it’s very difficult to argue against. If we’ve got this mythical body of trans people that everybody is saying is damaged, and there’s nothing to see, then people will believe that they’re being damaged. It keeps writing bullshit—sorry—and people believe in it. Because you can’t see anything to counter it.
Audience Member: Confirmation bias.
Marianne Oakes: If we can’t embrace the trans and be proud of being trans, and keep hiding and go into back rooms and having gatherings, we’ve got to start and be a part of this movement as well. I believe.
Audience Member: I came out five years ago, and it was very hush hush. I’m walking around with not a care in the world. I think society is changing, and our community is growing. The main thing I’ve learned this afternoon from you guys is that the more we complain collectively and vigilantly, about the lack of the care that we’re getting, the quicker we will get something done. It’s no good sitting back and waiting for someone to do this for us. We have to sort the problem by constantly writing and constantly complaining and constantly demanding the proper healthcare that we should be getting.