Sunday, 8 April 2007

NHS - No Humanity Shown

I'm still bringing myself to write about the Clarke Institute in Toronto. But to give you an idea of the kind of things that happened, and are happening now, here's a tale of the National Health Service in the UK. It's what happens when bureaucracy goes mad, were rules become instruments of abuse, and where the review panels designed to stop such silliness abdicate their responsibility.
A Halifax woman must undergo a thorough psychiatric assessment before she can see a specialist about an ordinary urological problem. If she refuses then NHS treatment will be denied.

This is the stark ultimatum presented to Claire Eastwood, a woman who underwent private vaginoplasty treatment in Thailand a few months ago, having given up the struggle to obtain an NHS (National Health Service) GIC (Gender Identity Clinic) referral with Calderdale PCT (Primary Care Trust) after more than eighteen months of waiting.

And the Leeds Gender Clinic, who insist she undertakes their twelve page standard evaluation, refuse to wave her through to a specialist -- even though the medical treatment she needs may not even require surgery.


Claire Eastwood's problems with Calderdale PCT are nothing new. Her original campaign to obtain a referral to Leeds GIC for NHS gender treatment has been covered in the past by local newspapers in Yorkshire, and by the BBC -- all sympathetic to her plight. She wrote first hand for PFC News about her campaign involving the council's health scrutiny committee earlier this year:

Calderdale UK: Standing up to the West Yorkshire PCTs

Her problems started because she simply could not obtain even a referral to a gender clinic within a reasonable time via local health administrators. This is because of the PCT's fixed annual quota for referrals to the clinic, which it was unwilling to exceed.

Having failed to budge the Primary Care Trust's stand through a series of solicitors' letters and the threat of court action, Claire eventually decided to cut her losses in 2006 -- and used the money she would have spent on legal action to hop on a plane to Thailand. There she received both breast and vaginal surgery without fuss and at a fraction of the costs quoted for NHS services in the UK. Overall she is delighted with the treatment she received there.

Unfortunately, as can sometimes happen with any treatment, Claire developed a small urinary problem as her new vagina healed. Such problems can be dealt with by any competent urological specialist; sometimes without any further surgery. Doctors call these kinds of minor adjustments "revisions". And revisions are commonplace in the NHS, even for people whose original surgery has been privately obtained.

But Claire's Care Trust responded to her trip abroad by announcing in writing that any medical treatment on the privately operated parts of her body would have to be considered in future by their "Exceptional Cases Committee" -- for the rest of her life!

It's unclear whether the PCT contemplated any exceptions at all, such as malignant tumours or urinary infections threatening the patient's kidneys. The PCT didn't appear to distinguish. And, without evaluation, who is to tell whether a urological problem is potentially life-threatening or not?

Department of Health policy advisors are on record as stating that penalising private patients in this way goes against health service policy. Yet according to Claire, in a February public meeting about local healthcare, the Deputy Director of Public Health for the area said in front of visiting senior civil servants that he didn't think such lifelong exceptional case treatment for private patients was "unfair".

In this case, of course, the PCT would claim that it hasn't refused a referral. It's just that it insists any treatment should go via the Leeds Gender Identity Clinic. And, if the Leeds GIC were acting rationally then Claire's problems might end there.

After all, Claire isn't seeking Gender Reassignment Surgery. She's had that, and she's glad and happy that she did. She's not even seeking surgery of any kind. A GP has already diagnosed that she needs to see a specialist to evaluate and treat her urologial problem. Nobody knows yet whether that requires surgery or not. She's not depressed. She's not suicidal. She's not seeking something irreversible. She clearly doesn't NEED a psychiatrist!

Yet none of this seems to have penetrated the Leeds GIC's mechanical approach towards anyone coming through their doors...

In a letter dated 23rd March a clinician wrote to Claire from the Leeds GIC :

"...The team discussed your case today. In order for us to recommend you for a surgery consulation [..] WE HAVE A DUTY OF CARE TO COMPLETE A PSYCHOSOCIAL ASSESSMENT" (emphasis added).

The letter continues,

"It would be the role of [the consultant] to assess in depth the physical issues in relation to revisional surgery. As you have not been through any NHS assessment for gender reassignment it is our duty to ensure this occurs before we can recommend for any type of surgery"

"In order for us to complete this assessment we would need you to fully co-operate with our assessment process. However if you do not wish to engage fully in this type of assessment then this is of course your choice, and we would then have to discharge you from our service. If you do choose not to engage in this process you would need to approach another healthcare professional, eg your own General Practitioner, who would then need to put a case together for the exceptional cases panel"

And then the "Catch 22" is delivered...

"The exceptional cases panel would then have to make a decision as to if such a request would be considered appropriate from outside of a gender service. We have discussed your case with the commissioners who fully support the assessment approach of the Leeds Gender Identity Service."

The "assessment" supplied to Claire when she requested a copy is a twelve page document labelled "Initial Assessment" which asks questions such as :

* The patient's sexual orientation
* Their religion
* Their school achievements
* Where they live and the type of accommodation
* Whether they are employed or not and
* If they have any convictions or have been to prison
That's the Initial assessment, remember. The really invasive stuff comes later.
And remember this has to be answered in full by Claire in order to see a specialist because of a problem with urinating!

At the moment Claire's position is unresolved. Instead of being seen by a choice of urologist within NHS waiting time limits, like any other member of the public in this position, her case has first been assessed by non-clinical staff because of a policy they've chosen to impose on her in a discriminatory manner. Then she has been further mis-referred to psychiatrists to assess whether she lives in the right kind of house and is sane enough for a proper specialist to look at her problem. And, if she quite reasonably refuses forced psychiatric evaluation in this manner, her urinary problem will go untreated with possibly serious consequences for her health.
OK, maybe time to swallow pride, fill out the stupid forms, jump through the hoops, whatever. Except....
Claire herself if quite clear about the mutual interests which she alleges are being served. In a letter accompanying a copy of the GIC's assessment documents, sent to me, she writes,

"...The GIC benefits [..] because it is paid £1,500 for an assessment"
She adds,"Furthermore the GIC is only paid to do one type of work and
that is to assess psychiatric assessments that the [Service Level
Agreement] insists must be no less than six interviews in duration over
six months. If it doesn't assess you it isn't paid, so in the spirit of
placing the needs of the PCT and itself above that of its patients it
will assess your psychiatric state or discharge you if you disagree."
Yes, it seems that in order to have a urologist assess her physical state, they must first have a program 6 months long assessing.... well, a programme 6 months long anyway. Because they have a "Duty of Care" to make sure that... well, a Duty of Care for something. They can't actually say what. But it's so important that even assessment before treatment must wait 6 months, no matter how much worse that makes the physical problem.
Psychiatrists and doctors who have seen these details are in agreement that the process being operated is improper -- ethically and medically.
Above all, psychiatrists have no business placing themselves between a patient and a specialist in a situation that is outside of their remit.
It has been suggested by one observer that such action is most probably actionable as malpractice.

What Claire will do next is not certain. Every day that passes means her simple medical problem is going unattended and may, as a result, deteriorate. Yet she is also quite right to reject inappropriate care under circumstances amounting to professional duress.

This story will clearly run and run...

- Christine Burns
Par For The Course.

Also Par for the Course is for them to state that as the result of psychiatric assessment, they cannot recommend referral at this stage. My bet is that they would be unable to recommend referral because the problem is obviously not psychological in nature. No matter, the next step would be barred anyway. You see, when there is evidence of such Bad Faith, Malpractice and Transphobia, it's not Paranoid to expect the worst, it's merely prudent. Heck, it would be insane to expect any other outcome!

Australia has a different setup, less bureaucratic, but also with rather more expense to the patient. But despite my dire financial state, I took one look at it and said "no". My decision was made easier by the fact that the procedure that was optimal for me isn't performed here (or anywhere else outside of Thailand). I would have ended up with a "Barbie Job"- no actual female genitalia, there wasn't sufficient raw material to construct any using the normal techniques practised here.

And for those who have been following my blog, the megadoses of Antibiotics have cleared up the infection, but as my GP predicted, have made me feel absolutely rotten. Good job it's a holiday weekend, there's no way I'd be well enough to drive to work. Or even get out of bed, much.


Anonymous said...

It seems that an old proverb should be modified to reflect the realities of health care in the face of its "free" provision:

If you want anything done right, or at least done, you have to pay for it yourself.


Alan Kellogg said...

Zoe, keep fighting. Were I there you'd be getting hugs and maybe a bit of comfort sex. :)