Going the long way around
North-West Lancashire Health Authority makes heavy weather of a policy change
5th February 2000
In 1998, the High Court changed the landscape for trans people seeking medical treatment as part of their gender transition. In a widely-reported ruling, Lord Justice Hidden upheld a claim by three trans women from North West Lancashire that their local Health Authority’s refusal to fund their treatment had been “unlawful and irrational”. In July 1999, that decision was upheld by the Court of Appeal.
Seven months later, North West Lancashire has still not adopted a new policy to comply with that ruling. What, you may well ask, has been going on?
No-one in the UK who reads a newspaper or listens to even the briefest of radio news bulletins could be unaware that the National Health Service lacks sufficient funds to offer all the treatments it is asked provide: throughout the service, there are delays, waiting lists, and over-pressed staff. But this case dealt not with the painful process of allocating priorities, but with a blanket refusal to meet one particular category of medical need. And all these judgments did was to prevent Local Health Authorities (LHAs) from operating a blanket ban on treating a particular type of illness. Instead, all cases must be assessed on their individual merits.
Now it would obviously be too time-consuming for every single case to be assessed individually. An LHA which insisted on reviewing all the case notes before authorising every instance of, for example, day surgery for an ingrown toenail, would rapidly find itself requiring huge numbers of administrative staff. So for the overwhelming majority of illnesses, LHAs adopt a policy which gives guidance on what procedures are to be funded, and which should be reviewed individually. They might decide that a minor gynaecological procedure such as dilation and curettage could always proceed if deemed clinically necessary, but that non-urgent hysterectomies should be reviewed individually in some specified situations, and that the very expensive process of heart-and-lung transplants should require individual authorisation in each case.
The key point in the courts’ rulings was that an LHA must not “fetter” its discretion — in other words, it can adopt guidelines to streamline its decision-making, but it must not prevent itself from considering what is the proper treatment in every individual case. The courts also ruled that this power of discretion must be exercised rationally — the factors taken into consideration must be fair and reasonable, and must be fairly and reasonably assessed.
So any policy on treating any particular category of illness must provide a mechanism for making a fair and reasonable decision in each case.
And that brings us back to the situation in North West Lancashire. Following the court rulings, the LHA had a policy which was illegal. It needed to set new guidance for itself, and it knew some of the things it could not do: above all, it could not say no in every case, as it had done before. But in what circumstances would it now say yes?
The answer came in a draft policy drawn up in October 1999, which made depressing reading for anyone hoping for a major rethink. Rather than recognising that the Courts had found their previous policy fundamentally flawed in its hostility to providing a treatment which is medically recognised as both appropriate and successful, the LHA prepared a draft which started from the explicit premise that assessment with a view to possible medical treatment was the “ideal” treatment for gender dysphoria … even though the courts had found that it was the only appropriate treatment. The policy continued to question the effectiveness of such treatment, even though their arguments on that issue had been rejected by the courts.
Having laid the groundwork for deprioritising this illness, the detailed proposals included so many restrictions on treatment that it might well be impossible for any patient to meet the conditions set out. To add further insult to injury, the LHA proposed a series of bizarre and expensive checks in every case, including (to take but one example among many) such outrageous notions as checking that treatment would be “in the best interests … of the patient’s community”. The implications for personal privacy do not merely fly in the face of a doctor’s duty of confidentiality, they clearly contravene the European Convention on Human Rights (Article 8: “Everyone has the right to respect for his private and family life…”).
Copies of the draft were sent to the Gender Identity Research and Education Society (GIRES), which kindly passed them on to Press For Change. Both organisations responded with detailed analysis of the draft policy, pointing out the many flaws.
Of course, we know that progress does not come from just saying “no”. To make change, it’s not enough to say what we don’t like, but to set out what we do want, and help those in authority to get it right.
So, having listed the flaws in the existing draft, the two organisations offered to work in conjunction with other groups representing trans people to help the LHA draw up a new policy which would satisfy legal requirements and provide a cost-effective solution to the treatment needs of trans people.
On the subject of cost-effectiveness, it’s worth looking just how much money is involved. I have just repeated an exercise I have done before, and calculate that the total cost to the NHS, nationwide, of treating gender dysphoria is between one million pounds and five million pounds a year. The latter figure comes only from inflating all costs to the highest level I can find anywhere, and grossly overestimating both the number of people presenting for treatment and the number who undergo the most expensive treatments, such as genital surgery … but let’s look at what that number actually means.
Five million pounds is a lot of money, unless you look at it in context. The context in this case of a total NHS budget of some 40 billion pounds: the cost of treating trans people amounts at most to a few pence out of every thousand pounds of NHS spending, a tiny fraction of a percentage point. An LHA determined to stretch its resources as far as possible can only make minute savings by trimming the budget for gender dysphoria treatments, but the same administrative expertise applied to the bigger items in the budget offers much greater rewards. There is an obvious question to be asked about effective use of administrative time.
But if we assume for a moment that every conscientious holder of public funds tries to use that money as carefully as possible, then there is a good case to be made for looking in detail at even the smaller items in the budget, and ask whether they are being delivered efficiently. And that is where ironies really start to pile up.
The North West Lancashire Health Authority proposed to use the Charing Cross clinic in London as its sole provider of treatment, with no option to use closer facilities such as that at St James’s University Hospital in Leeds. Not only is Charing Cross the most expensive Gender Identity Clinic in the UK, but a 1996 survey by the Gender Trust revealed that it had a level of client satisfaction far below that of other clinics. In other words, the authority was proposing to use its limited resources to purchase an expensive service which was less likely than others to meet the needs of patients, and which involved expensive and time-consuming travel (a serious issue for an economically-disadvantaged group of people, for whom the cost of a return journey to London may be prohibitive, and a day off work hard to arrange). To offer an expensive service for those who want it (and some people do want to go to Charing Cross) would be generous and wise; but to require it even for those would prefer treatment elsewhere seems quite perverse.
That, of course, applies only to those approved for referral to a clinic. Before any referral would be approved, the Health Authority set out a very complex process of administrative assessment, a process which would inevitably take a lot of resources to implement … and which would only follow the detailed clinical assessment which all trans people are required to undergo. For what? Well, one of the instances in which specific authorisation would have had to be sought was for hormone treatment: the cost of each dose of testosterone supplement for trans men is a few pence.
Is it really an effective use of resources to set up an administrative review of each individual instance of a procedure which will cost only a few pounds a year? Is it really an effective use of resources to select the most expensive service-provider without good evidence of a higher quality of service?
It’s hard to avoid the conclusion that this exercise was not really about setting out a mechanism for efficient use of limited resources, but about a lingering unwillingness to accept that medical treatment for gender dysphoria is a matter of supreme importance to the health of the individuals concerned, a treatment with a high clinical success rate which enables people to rejoin society and get on with their lives.
We hoped that our assessments would help the Health Authority to try again … to move beyond what we hoped were inadvertent carry-overs from its previous policy, and to draft a new policy which did not subject trans people to all sorts of hoops not imposed in other medical conditions.
The revised draft reached us after Christmas, and it does contain a lot of improvements. Gone, for example, is the proposal to check with the “community”; but on closer reading, there is still a requirement for every patient to consent to unspecified and unlimited “enquiries”, which may in practice amount to much the same as before. The proposal to require treatment at Charing Cross is now modified to add provision for an alternative … but only if the patient is found to have a “particularly good reason” — which would significantly and unacceptably dilute the provision in the Patient’s Charter of a right to referral to a consultant “acceptable to you”.
And so, on down a long list which you can read in the responses to the new draft from both Press For Change and GIRES. In summary, the new draft policy still fails the critical test of treating people with gender dysphoria less favourably than those with other medical conditions. We’re not looking for special treatment, just to be treated as fairly as everyone else: and so far, that is not on offer from North West Lancashire Health Authority.
Nonetheless, we have sent off our an evaluation of the new draft, and have repeated our offer to help in constructing a new policy. It remains to be seen whether that offer will be taken up, or whether we will find ourselves, two or three months hence, responding to yet another draft policy which still prioritises restricting treatment rather than providing it cost-effectively.
So, now, it’s February 2000. Fourteen months after the old policy was first ruled illegal, and seven months after that ruling was upheld on appeal, North-West Lancashire Health Authority has still not adopted a new policy which would even meet the minimum requirements of the Courts.
Along the way, a legal bill for over £200,000 exceeds the cost to the Authority of providing gender dysphoria treatment for several years; and that’s without counting the cost of the massive administrative effort involved in fighting the law case and preparing several policy redrafts.
If a significantly improved policy is not adopted soon, there is a real possibility the three women who brought their case to the courts may have to take further legal action to get the ruling implemented. How much would that cost? And is it really a proper use of public funds raised for medical treatment to spend so much money trying to evade even the minimum legal duty to provide treatment to those who need it?
I hope that by the time we read the next draft policy, we’ll all be able to congratulate the Health Authority on providing a way to deliver cost-effective medical treatment to those who need it. And rest assured, if that is what we find, we’ll be unstinting in our praise.
Instead, I have a sinking feeling that instead we’ll be watching the lawyers dusting off their fat files on a case which should long ago have become history.
I hope I’m wrong. Because it’s not just trans people who deserve better: all the other taxpayers who help foot the bill for this protracted saga also have a right to see their health service use its resources wisely. The long way around a problem is rarely the most efficient.