This week is Transgender Awareness Week with today being Transgender Day of Remembrance, and as chance would have it I received a response in relation to a Freedom of Information (FoI) request I made to the National Gender Service (NGS) in Loughlinstown. In a previous article I looked at its waiting lists. This time I’m going to look at staff and patients.
Unfortunately, as before, not all of the request was granted because “The NGS does not have a database of people attending the service”. Considering my question was regarding how many people are currently attending the NGS it’s a bit worrying as that would seem like rather basic information to have.
However, once again the staff in the HSE have provided useful context, which I deeply appreciate, as any insights we can gain into our government services are useful:
What this seems to be saying is that there are around 700 people who have completed initial assessment and are thus at Step 5 of the referral pathway: The endocrine appointment. Per the website “These appointments will generally be every six months for the first two years with us and then once every twelve months”.
So there are 700 people, who represent five years worth of patients on hormones. Of this, 40% need one appointment a year, and 60% need two. That would be 1,120 appointments a year, which tracks well with the 1,128 appointments possible in a year given that there are up to 94 per month. A bit tight, but given the 700 is an estimate to start with it appears well within the realms of possibility.
One More Question
But there’s one teeny, tiny problem. I’ve talked to some patients and after two years, they’re all still having reviews every six months. If that’s the case more generally then that’d imply a need for 1,400 reviews per year.
So, what’s going on? I have some ideas.
Idea 1: The people I talked to could be unrepresentative, complex cases requiring careful attention. However, that seems unlikely from talking to them. None of them had even heard of annual appointments.
Idea 2: The 700 estimate could be very wrong. I did a simple model of patients through the NGS over the 20 years of its existence. I assumed patients are discharged after five years per the above. There was one year for assessment before that and used the research from my previous article to get a good idea of historical referrals.
The best way I could make it work to hit the 890 people expected to be on the waiting list at the end of 2021 was to take it that at most 100 people are being assessed per year. This is quite a bit less than the 150 the NGS claims as its capacity. But it is within the 80-130 estimate I made based on information from previous FoI requests.
That would imply 600 patients, with around 100 currently going through initial assessment and a further 500 patients taking hormones. Considering this, and with 1,128 reviews per year viable, it’s likely possible to see 500 patients twice a year, with a good bit of breathing room added given the NGS states “we can see you as often as needed”.
Idea 3: The 700 could be right, in which case there’s a shortfall of 272 reviews per year. If 94 per month is the maximum capacity of the service, that would imply that the NGS ran out of capacity around 18 months ago. Many Gender Identity Clinics (GIC) in the UK have run out of capacity to take on new patients, so it wouldn’t be surprising if it were also to happen here. This could imply many patients are not being discharged back to their GPs at five years, let alone sooner than five years. Put another way, only 30% of all patients they prescribed hormones to would have been discharged back to their GP.
Idea 4: The 700 and the 1128 reviews per year could be right, but “almost all” of them are more complex than it would seem. This could be the case if 40% of the 700 are awaiting surgery without hormones and are only seen once a year, or 20% who aren’t seen at all. While I certainly know trans people who only want surgery, these numbers feel far too high.
Which of these is the case? It’s probably a mix, plus other factors.
What the staffing numbers say
A key issue here is that I am attempting to understand a service which doesn’t even have a basic patient database available for itself in order to find out such information, let alone me trying to do so via crumbs in newspaper articles, scientific papers, and through FoI requests. It’d be great if information like this was publicly shared on the NGS’s website.
My previous FoI request indicated that the NGS hopes to build such a database from 2019 onwards, subject to staffing. My FoI request also revealed information about the staffing of the NGS:
WTE means Whole Time Equivalents with 1.0 equating to the same as a full-time position, though it could comprise multiple people working part-time within the NGS. That adds up to 12.3 people working in the NGS, of which 3.5 are administrators.
Given that I estimate 1,900 people have been referred to the NGS over the past 20 years, and that HSE staff work around 220 days a year or 1,760 hours then the 3.5 administrators could spend over three hours per year on each individual person who has ever been referred. Hopefully that is more than sufficient to build the patient database by some time next year. And then they can share more accurate statistics with both current patients and those of us on the waiting list.
The 1,128 reviews performed annually are presumably done by an endocrinologist given that “almost all” are said to be on hormone therapy. Given the 1.5 WTEs it works out that around 3.4 are performed per endocrinologist per working day. This presumably excludes the initial endocrine appointment which would bring it to around 3.9 patients to see per endocrinologist per working day.
If 150 people undergo initial assessment per year, the two assessments plus an allowance for the team to meet takes say six hours, and for some reason are done by two staff members. That’s around 5,400 hours per year, or a touch over three staff. This doesn’t consider the 33% of people who require more than two assessments. So, overall, it seems quite sufficient to keep the psychiatrists, psychologists, and nurses busy. Simplifying this assessment process such as via an informed consent model would allow significant time savings for both the NGS and a much better experience for patients.
It is also interesting to compare this list with the list of positions on the website:
The NGS website was launched in July 2021. It would seem that there are no longer any Liaison Psychiatry Nurse Specialists or Senior Clinical Psychologists working with them. Losing two whole disciplines in the space of four months is somewhat concerning.
On the other hand such disciplines aren’t essential for the vast majority of trans healthcare. GPs already prescribe HRT for cis people. Why not for trans people too?
Jessica Black (she/her) is an Irish lady who dabbles in statistics from time to time.
Featured image via Twitter