That’s a controversial headline! Lets dive right in before someone bites my head off for it….
I want to preface everything below by saying firstly that I work for the NHS. I’m not going to say anything else about my job or where I work because firstly it’s against my trust policy to talk about my work without clearing it through our communications team (and I’m not out at work), and secondly because I know if I do someone will track me down and start harassing me. That’s the world we live in.
The reason I say I work for the NHS is because I know exactly the troubles the system faces, better than most. My particular role brings me into contact with a vast amount of information, oversight of complaints and patient records, and I can see a real whole picture of a service. The NHS is struggling mainly because of a conservative government determined to sell it off in bits to their mates, and there’s nothing the country can do about that other than vote them out.
For those of you outside the UK (or inside the UK who don’t pay attention) the NHS, or National Health Service, is the UK’s healthcare system. The NHS is a “free at point of access” system meaning you will always be given your care and the cost part is worked out later. The NHS generates money from a national tax (your “NHS Contribution”) that is set based on your salary.
The way the NHS runs is that the money all goes into a big pot and is then divvied out to “Care Commissioning Groups” (CCGs) who cover a set number of GP practices across the country. These CCGs get x pounds per patient they cover and then decide how that money will be spent in their area to buy services they need, like hospitals etc. They generally employ Trusts to provide a bunch of services to their population and your local hospital is likely a Trust that does all of your acute physical needs from x-rays to surgery.
The NHS is a remarkable system and something that our country should reasonably be proud of. Universal healthcare regardless of your financial ability is one thing, but a standardisation of care that is monitored nationally and trusts are held accountable, along with the NHS’s purchasing power (meaning pharmacies can’t hold the country to ransom by increasing drug costs 1000x like they have been in America) gives us something hugely beneficial.
It’s also fundamentally broken if you want gender services.
So the crux of the matter. This is something I didn’t really know about until I realised I was trans, but if you are transgender the NHS does nothing to help you. I’m going to look at this in 2 age brackets (because that’s how the NHS does it); under 18 and over 18. Interestingly most of the NHS works to this 18 year old split despite the fact it has routinely been criticised for being a completely arbitrary cutoff point that is often actively harmful for patients transitioning from children’s service to adult services. More and more commissioners are moving to a split at 25 but this is ridiculously slow to be picked up.
If you’re under 18 and you realise you’re trans you are in for a fight. To start with you’ll need to talk to your GP, and that is going to be a battle on its own. There are some truly superb GPs across England, unfortunately there are far more who are incompetent or uncaring. Even if you get one who does care the odds are they have no idea what to do and will refer you to local mental health services, who will bounce your referral because they’re not commissioned to deal with gender identity.
So eventually your GP will get the idea they need to do something else (although GPs across the country have a catastrophic lack of clinical curiosity and if a referral comes back negative, or a test inconclusive, they’ll just stop doing anything until you the patient chase them for it). They may hit the old Google and find out that there is only one place in England they can refer you; the Tavistock Centre, the Gender Identity Development Services clinic in London. That’s it, just one place.
So eventually you get a referral made to them. GPs probably won’t like doing this either as a GP has to pay per referral, so your best bet is to go around April when they’re flush with cash as if you go at the start of the new year they’ll be broke and not want to refer anyone (true story).
Now you’re on the waiting list for gender services! Yay! Now you wait. And wait. Currently the GIDS are seeing people who were referred June 2017. That’s a wait of 20 months to be seen.
Here I would like to highlight that the NHS has a set of targets that are enshrined as what you as a person entitled to NHS care can expect. These targets are highlighted as national ones that every trust and organisation across the country must report to, and failure to meet these targets is seen as a breach of commissioning standards. There’s a handful of them, for example if you attend A&E you are expected to be seen within 4 hours of arriving at the latest. These targets can’t always be met but when they aren’t the expectation is that the trust can and will explain why they didn’t meet them as well as to outline what they’re going to do to ensure they do meet them in the future.
For non-emergency care there is a standard called “RTT” or “Referral To Treatment”, the time every patient should be seen within. This is 18 weeks, or approximately 4.5 months. Let that sink in; the NHS has set out a target that all people must be seen within and also has a service that has a waiting list 4x longer than that.
And that waiting list isn’t referral to treatment, it’s for referral to initial assessment. We’ll get on to treatment in a moment.
So you’ve now been seen by the GIDS and things are moving. What next? Well we’ll have to have a set of assessment, between 3 and 6 according to their website. Usually 6 according to people who’ve gone through it. These sessions are around an hour each, usually nowhere near where you live (remember; single team) and will be held with a variety of people present from you on your own, to you with parents, to one parent etc.
The staff you get will be a real role of the dice too. For some unknown reason the NHS has decided that mental health professionals are okay to assess people with mental health needs (fine), and that social workers are interchangeable with mental health professionals. So the person who sees you may just be a social worker who has experience working with children, that’s it. Helpful. Remember all those scandals a little while back where social care were letting children be abused and assaulted without doing anything? Those people are going to do an assessment.
So where are we? We’ve been waiting 20 months (at least), been waiting at least 6 weeks more whilst we’ve been being assessed (but likely much much longer), and through all this we’ve been constantly telling people we’re not our assigned-at-birth gender and being disbelieved, questioned, prodded, poked, and made to justify our existence over and over again to a bunch of professional social workers. Surely now we can start treatment?
Well hopefully we weren’t over 15 when this started! Because if we were we’re now getting a bit old for GIDS and there’s a reasonable chance we’re going to be discharged to the adult services with no follow up.
If we were under 15 hopefully the service managed to get everything complete before puberty for maximum effectiveness of hormonal treatment, but unlikely.
Now we might get to talk about hormonal therapy, this doesn’t get done by GIDS though! It’s a referral to an endocrinology team who have their own waiting list and we get to start all over again!
So what you can see from the above is that if everything goes right we’re looking at waiting 3 years to start treatment. Remember that 18 weeks? we’re at 156 weeks. Over 8.5x longer than the NHS has decided is acceptable. Remember that 18 week target was set by the NHS, by professionals, by the government, and held as the minimum standard patients can expect to hold the NHS to.
So what if you’re an adult? You’re looking at about the same 20 weeks to get into the service. Once you’re there it gets a bit easier as they’ll start hormonal therapy after minimum 2 appointments.
Once you’ve had that agreed you’re in for a whole other work of hurt though, back to your trusty ol’ GP!
GPs frequently actively refuse any part of transgender care, refusing to prescribe the medication under Shared Care agreements (where a GP agreed to prescribe the medication at the advice of a specialist), repeatedly denying prescriptions, denying to undertake required blood tests, and generally being arsey about the whole thing.
So what can you do? The alternative is going private. This one costs money, you’re going to be paying a really variable amount for gender services. The advantage is there waiting lists are usually much shorted, if they exist at all. The biggest problem is if you thought a GP could be ignorant about NHS Shared Care it’s got nothing on private Shared Care. Despite the fact the NHS has sent out a memo to all surgeries instructing them that they must treat people who have engaged with private clinics the same as NHS clinics they frequently won’t (by the way; if you’re in this situation feel free to take and use this letter as ammo).
So where does that leave this particularly depressing post? There is no easy service for us anywhere. Despite medical standards applying across the board these break down when it comes to our specific needs and nobody cares. Professionals are at least usually confused if not outright hostile.
What should you do? That’s a decision only you can make. Talk to your professionals and support network, complain left right and center, fight for your rights. We shouldn’t have to, but we will keep needing to.
As for me? I’ll be going private. And heaven help and GP that gets in my way.
P.s. this is a bit of a grim blog post. If you’re in this situation remember we’re all fighting for you, you are valid, you do matter. If you’re feeling really down or suicidal you can always contact the Samaritans on 116 123 or the NHS 111 service and talk to them. Stay strong.