The Empty Hourglass

For those that have followed my blog since I came out, you’ll know that I’ve had so many frustrations along the way – especially when it comes to the current NHS provisions for trans healthcare. Whilst I’ve always tried to remain positive and to keep busy, all that’s done is paint over the personal cracks. The fact is, after 4 years of waiting, I am still on the waiting list for my chosen gender identity clinic (GIC). The legal guideline for waiting is 18 weeks. The waiting list is getting longer but I’m not getting any younger. Enough is enough. Even long before the global pandemic, the system was broken…and that’s why I’m taking legal action against NHS England.

Yes, I’ve been fortunate enough to go private and to speed up some parts of my transition. I’ve always recognised my privilege and I totally understand that there are so many other who aren’t as fortunate. It’s essentially why I dedicate my energy to creating change for everyone. I can’t just sit by and let others struggle. But let’s break things down a little. Yes, I’ve had a diagnosis. Yes, I’ve started HRT…and yes, I’ve had laser hair removal. That’s where I have to draw a line because the surgeries I’ve had would never have been offered under NHS’ care anyway. Facial feminisation surgery (FFS), breast augmentation and vocal surgery are not considered necessary for trans healthcare. Because of cost, no doubt, because I’ve never spoken to any trans woman whose dysphoria isn’t linked to their face or voice. They are the two elements we connect with when engaging with people. We see them. We hear them. It’s how we tether ourselves to those around us. Remembering that testosterone during puberty is a one-way road, I’d argue that these surgeries are needed, should people choose them. Surgeries don’t define us, and a trans person doesn’t need surgeries to be valid. But at least make it an option, right? No two transitions are the same, so why the NHS needs to listen to trans people. I won’t even go into the fact that breast augmentation is offered to some cis women on mental health grounds but it’s a firm no for trans women, even though the mental health trauma is the same. So anyway, removing the surgeries which NHS would not have provided anyway, it’s not like I’m able continue my medical transition privately. In theory, when I get to the front of my GIC’s queue, I should be able to sidestep back into the NHS pathway and carry on from there. In theory. You see, this isn’t guaranteed. In fact, it’s not something I should even count on. There is every chance that, at their discretion, I go through the diagnosis process and HRT evaluation process again, which will of course include long waiting times in between appointments. We’re at a point where not even going private can help the NHS. Their process is far too binary. Oh, the irony.

There are literally thousands of people waiting for the NHS to offer them first appointments too. We’re an afterthought to a service that’s become complacent to its own astronomical waiting times. I went through each GIC’s site and pulled the waiting list data for the above table. I’d say the figure is closer to 26,000 people waiting for a first appointment. What stands out immediately from the table is that GICs don’t share the same info. There’s no consistency. Which is delightful, coming from the NHS bosses who insist that there must be consistency in care and standards. Different trusts have different ways of interpreting the guidelines and therefore different ways of doing things. The NHS trans healthcare system is a lottery. How is this acceptable? At least give us all the same type of info so we can make an informed decision on which GIC we wish to be referred to, like they already do with GPs or dentists. Why not call them and ask? Sadly, GICs tell you not to call them for anything to do with waiting times. They’re too busy dealing with other stuff. We’re not being forgotten by NHS England, we’re being ignored. Abandoned. So where does that leave trans people?

Is it any surprise that the suicide rate is high? Mental health is at an all time low thanks to waiting times being at an all time high. Anybody could have foreseen this. Even way before the pandemic, the amount of people being referred per month exceeded the amount of people being offered first appointments, creating an inevitable backlog that is now out of control. Under current regulations, from the point of referral by your GP, a patient in England should be seen by a specialist service within 18 weeks. To be honest, the only thing you’re going to see in that timescale is your confirmation letter from the GIC, confirming that you’re on the waiting list. They’ll admit to the long delays but not really offer much else. It really does feel like we’re an afterthought to a service that’s become complacent to its own astronomical waiting times. That’s why this case is needed. The NHS cannot keep going like this. It was a mess before the Covid-19 pandemic and things will only get much worse. A Freedom of Information request showed that The Laurels in Exeter saw just 2 patients in a 12 month period. I know we had national lockdown because of the pandemic but there were nearly 4 months before the first UK wide lockdown at the end of March 2020. Even if we treat the rest of 2020 as a write off, seeing just 2 people in 4 months is disgraceful. Who knows what the other GICs are hiding by not publishing their figures? What’s with the secrecy and inconsistency??

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Along with another Claimant, we’re working with Good Law Project to challenge NHS England’s position. We want to know what they are doing to provide alternative healthcare for trans people who they’ve failed to see within their own 18 weeks referral to treatment (RTT) target – a legal obligation which they often miss. We want to know what they’re doing to actively reduce the backlog, especially as two of the seven GICs aren’t even offering any first appointments at present – and there’s nothing to even suggest when appointments will resume. It’s not lawful to leave trans people in limbo like this. We also hope this case will help trans people to understand their legal rights. Whilst we use ourselves as examples in this case, it’s not about us. It’s not about jumping the queue or any other personal gain. It’s about all of us. Every trans person in England that is already on the waiting list. Every trans person that will ask to be referred to a GIC for years to come. Every single person that’s being failed by the lack of provisions from NHS England. By the way, this isn’t strictly about money. It’s about how they use it. How they plan, how they structure and how they deliver. To do this effectively, it needs input from those the care is for.

Having started on this case a while ago, it feels good to finally be able to go public and to let people know there is hope. I must admit, keeping something this big as a secret for so long has been tough and to finally go public is like coming out all over again. This case could give NHS England the nudge they desperately need to stop dragging their feet. It breaks my heart to see so many people suffering and drowning in mental health difficulties. I won’t lie, I am cautious about this case. Nervous. Even scared. There could be hate from those who will claim we’re attacking the NHS front line staff or trying to drain funds, or from those who hate us. No matter what we do or don’t do. I’ve invested as much as I can in this, in several ways…and I really want it to make a difference. Sometimes, you need to break something to change it. Well, the NHS trans healthcare system is already broken. Now to change it.

2 thoughts on “The Empty Hourglass

  1. Thank you for using your voice to share your story and experiences. I was lucky enough to hear you speak today and it hits very close to home for me. Reading your blog, it just reinforces the imbalance and discrimination that is still present and prevalent in our society. I’m still at the start of my journey, exploring my identity and picking apart everything that felt so incredibly wrong growing up, so I’d personally like to thank you for sharing and speaking up.

    Liked by 1 person

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