Lesley

The most important thing for trans kids is to be supported and affirmed.There was always a point where, for a while, his early childhood his primary school years that, at any point, I was anticipating him coming back and saying, ‘I don’t wanna be known as his birth name anymore. I want to become this.’ I was always anticipating it. It just never, never materialised until he hit puberty.

I just felt actually it’s been here years. There was always a sense of actually he was trying to be something else for other people. So there was a real sense of relief, but at the same time “oh, shit life’s gonna get really difficult now”. That’s what I remember. Because I, you see the representations on, in the media. You hear about trans adults who were rejected as kids, as teens. And you just read their experiences and you think, this is going to be hard. This isn’t going to be easy. 

During that wait, to be put on the waiting list, we heard nothing. No correspondence or communication at all from gender services of when and if we were gonna be seen. It was only when we got the letter to say we’d been accepted on the waiting list and the waiting list was currently 18 months. And we had nothing again until we got the appointment 20 months later. So we were left in the lurch not knowing if and when an appointment was going to happen. So that was huge. What would have been useful, just even to have some sort of follow up, just a brief telephone call to say, you are on a waiting list.

I think fundamentally we have been really fortunate that the GP and the whole practice has been exceptionally supportive of us. And that we managed to secure shared care. I am aware that not everyone is in that situation that their GPs doesn’t self-fund or have shared care or are not supportive in the way our GP is. It made a huge difference to the way I take my son in for blood tests or injections, the way they greet him, the way they organise his appointments. They always have movable slots for him. If he needs to see the nurse, they will make sure his appointments are first thing, so he’s able to come in first thing and then go straight to school. They will always ring up and say, “the blood test results are in” and give us paper copies. They have been amazing and it’s fundamentally made a huge difference to us. If only all GP practices were like this I think it would make so much of a difference I reckon. 

It was always approached from a cisnormative perspective. So there was an assumption that maybe it was a phase and he’d grow out of it. There was a perspective that the norm is to be cis. Because he had been involved with CAMHS for a long time. Their perspective was that it was part of a mental health difficulty.
So it felt this was part of a mental health issue but it’s coming from a much bigger, wider picture, the wider picture. But they couldn’t see that which maybe actually was part of the problem.

It’s been okay, actually. The two sessions we have had, they double up. So, they have two clinicians, two therapists. One sees my son, the other sees his dad and myself. I think they’re trying to get a bigger picture of what’s going on. They’re very good at trying to explain to my son about the process, all about being on the child and adolescent pathway. They appeared not to have really grasped the fact that stopping hormones wouldn’t reserve, reverse physical changes that had already happened. They didn't really quite grasp the fact that since he had been on hormones his mental health had improved significantly. And what coming off hormones would do to his mental health. They saw it as more about the physical changes, they just didn't get that bit. So I’m thinking well, how much do they really know? But on the whole it’s not been too negative, so far. 

We reached out to an independent provider who were amazing and have been amazing with the service they provided for my son, myself our GP. They have a shared care agreement between our GP practice and the provider. Which means that everything runs smoothly. This is a practice nurse once every three weeks for injections and you can’t fault our GP and all he has done, it’s brilliant.

When it relates to being on the waiting list, because one of the frustrating things around the NHS system and the specialists for puberty blockers and cross sex hormones are provided and prescribed by GPs across the board. So we don’t need to go to a tertiary service. They need to go to a specialist service in terms of gender identity service, they can’t do that unless it goes through a specialist service. And at the moment, because it’s all tied up with mental health they have to be screened first before being prescribed hormones or puberty blockers. So there are all levels of gate keeping.  

The challenge has been extraordinary. The long waiting list to be seen by the Gender Identity Services for kids. We waited for twenty months from the first referral through to our first appointment with them. This was always approached from a cisnormative perspective. So the assumption that maybe it was a phase or he would grow out of it. There was a perspective that the norm is to be cis. And because he was involved with CAMHS for a long time they put it down as part of a mental health difficulty. We didn't really approach the GP until we were trying to manage his periods and the GP was amazing. We talked about it and she put him on the pill, which made things worse for a while. But she was trying.

Well partly it was the case but there was a lot of increase in dysphoria and he had made several attempts to take his own life. There was lots of things like self-harm and overdose type stuff going on.  I felt part of it, I felt, was around him being trans and it not being supported and validated in that way.

GIDS couldn’t expedite his referral, because of his mental health, it was deteriorating. So after six months they, they chased it up. It was roughly about that time that we decided to go for a private assessment. If we didn’t do something, he’s not gonna survive. He’s not going to live. He was going to end up taking his own life. 

We looked at the pastoral support, in general. The emotional support what they offered students. We had already moved schools once and the jargon from the second school was all about individualised wellbeing support and stuff like that. And I was sold on that. I thought this is fantastic. But in reality it didn’t fit with they said they provided and what they did provide had huge discrepancies. So with this school, I went to great lengths to make sure they provided what they said they provided That’s the bit that’s made all the difference. He’s got a pastoral support, a named pastoral support, that he could link to at any point. He was able to manage himself and his emotions during this time and during the day. And they have been great. 

One of the things, one of the frustrating things around the whole NHS system and the specialists for puberty blockers and cross sex hormones are, are provided and prescribed by GPs across the board for different reasons. So, and they don’t need to go to tertiary service. They need to go to a specialist service. In terms of the gender identity services that they can’t do that unless it goes through like a specialist provider, a specialist. And at the moment, because it’s all tied in with mental health that this mental health screening bit needs to happen first before young people, young adults can be prescribed hormones across or puberty blockers. And so there’s like these levels of gate keeping. And what was, what we really liberating about the other service was yeah, there was an assessment and it did take a good few months to do, because of [participant’s child’s name], my son’s complexities that there was that level of cooperation with the GP and the service that meant that actually as long as the, the bloods are being checked and reviewed on a fairly regular basis, which they are, that the GP has no issue with prescribing it, which is great. We never knew when the, although when we started off, this is going really convoluted, isn’t it. When we started on the referred first, the waiting list was 18 months. As time went on, the waiting list was getting longer and longer and longer. We didn't really know when we would be seen for our first appointment. We then knew that there was gonna be another six months at least of assessment before we got seen by the endocrinologist as part of the GIDS. I knew that if we didn't put things in place, my son wouldn’t be alive.

It used to be around periods and he was in huge distress when he went through this every month. Partly because it was about his breasts. And wearing binders and things like that. So he has a few binders that help him and they helped him feel less dysphoric. There were lots of issues around his genitalia and what the genitalia he doesn’t have. His perception of penises are much bigger than they actually are [Laughs]. He has a couple of packers one which I bought him, which I think is probably a realistic size for a teenage boy. He chose one from my perspective, completely unrealistic in size. But it makes him feel better. So that sort of helps.

While my son was an inpatient, he had therapeutic sessions with one of the nurses on the ward around storing eggs and stuff like that. So the nurse said to him at one point, you know “If I was in your position I’d want my eggs to be stored.” Up to this point though he was clear “I don’t want to be a biological parent. I don’t want any of my eggs to be stored.” He has a genetic condition as well, which implicates matters which means there’s a 50/50 chance of his genetic condition being passed on to an offspring. So he’d already made it quite clear in his decision, “I don’t want to be a biological parent.” And through the dysphoria he felt that if he had been pregnant then he really wouldn’t want that. So therefore the hormones should stop. So they made the decision that he shouldn’t be on hormones while he was an inpatient. Fortunately, he persuaded them otherwise and they negotiated a reduced dose, not stopping it altogether. But there is still a lot of judgment. 

He’d already spoken to a lot of younger trans men who have undergone the surgery, top surgery. He identified the surgery that he wants. Ideally, it would be good to have it done on the NHS. In his mind, the sooner the better. The youngest is 17 when you can go private and they are specific individuals who do that. So he researched the surgeons, the technique, bedside manner etc. He’s spoken to loads of trans guys who would say, that guy is good. Don’t touch him with a barge pole etc. I’ve done some research too so [Laughs] I have him all backed up.

It’s actually been really proactive and I think it’s really, really reassuring, because it feels like it’s not something being done on a whim. But you can see it’s life changing and the difference it’s made in terms of positive mental health is huge. We he is speaking to a non-binary trans person the other week, at one point they will realise that they may have a lump in their breast and they actually got excited that it could mean the removal of the breast. I think  that that’s obviously not a typical way that you would respond to needing a mastectomy, which left him recognising that they were trans and non-binary. And so the way my son thinks about the top surgery is almost in a similar way. I just can’t wait for it to happen, cause I think this will make him who he is. 

I don’t know why it is, the reason I fundamentally recognise that my son is trans and that’s not going to change.  I don’t think he’s going to say in four year’s time well I got it wrong and I actually am cis. And if he does well that’s okay. But I don’t have any concerns moving forward with the top surgery at all. 

His current school is great. You know, everything in terms of use of the toilets and games and stuff like that. They’ve given him lots of support. He does pull up one of his science teachers when they have lessons about the reproductive system and stuff like that. And he’ll pull them up and they’ll go, “oh ok that’s because of that”, cause they’re so used to teaching in a typically gendered way. But yes, school are great. The current system is quite okay. 

I think for some people it centres around grief. Some people feel that their child that they knew, that it’s no longer the same child. But actually when you realise it is the same person then you have to deal with things on your own and in response to them it’s a hard juggling act sometimes. 

It’s been really difficult because my parents are finding it exceptionally difficult not to misgender our son. They will say, “you will always be our beautiful granddaughter.” He’s 15 and he’s growing a moustache and yet you still refer to him as your granddaughter.  I know they find that really hard but my son feels really rejected by them.  I think they’re trying but it’s really going frustratingly slow. I think it’s part of the problem that my son is very private about what’s going on for him and he doesn’t like to talk to the extended family about it. But actually it’s important for me that they know so they can adjust. Sometimes I just feel caught in between the need to talk to them, but respecting his privacy and not wanting to talk to them about it too much. I don’t want him to feel betrayed because I have spoken to them about it. But that’s because I want things to be easier for him. And sometimes I think he does not get that bit. But that’s being a teenager and not getting the wider perspective of it. That, that’s really hard I think. I’m lucky that I’ve got a good friendship network quite a lot of them have got backgrounds in CAMHS and stuff like that. So they’ve been amazing and when things are particularly tough I’ve been able to pop round for a coffee or something like that and I’m able to take him with me because of how containing they are. It’s just more doable and yeah, they’ve been really great.

Where do I get it? Well, I get it from the World Professional Association for Transgender Health. Because of my professional role, I have been able to become a member myself. I get first hand access to all of that. There’d a lot of academics who are trans or trans friendly on Twitter. They can give you links to their work and because I’m both an academic and a student I can get past the pay wall and have access to the journal articles and stuff like that. Plus there’s loads of really great, good books out there by people who are trans so I’ve read quite a lot of them and speak to parents who have experienced a wide variety of different services as well. I link into Mermaids and their residential zone and their forums. I try to get the biggest broad view as possible.

I think I’m really lucky that I have a good friendship network. Like I said quite a lot of them have good backgrounds in CAMHS. Actually his care coordinator in CAMHS has been really supportive. That helps him. I think finally they’re getting it. 

One is to get the support or have the support of your family, because it can be quite lonely and isolating. So you really must seek out to connect with other parents of trans kids, because there is a commonality in shared experience. All our journeys are different, but there is a commonality that means other parents get it. You don’t really need to explain. They just go “oh yeah I know.”