Welcome to my blog, which I started way back in December 2002 - long before social media was a thing! With the advent of Facebook, Twitter etc. I don't write that often here now, but you never know when I might feel the urge to do so.
Sunday, October 02, 2005
Some of the things I hear regularly on some of the online support forums about the experiences many transpeople in the UK have had with so-called "health professionals" never cease to amaze me. Although I consider myself to have been pretty lucky, it could all too easily have been different.
With the Gender Recognition Act now firmly embedded in UK Law, Press For Change are starting to pile on the pressure about this sorry situation. Sadly, this is just one story among many.
Let's hope that in time they can make a difference.
No Welcome in the Hillside
By Christine Burns
Oct 1st, 2005
The following account is based on the first hand accounts of a person living in Wales whom I will call Rhia.
Rhia, registered male at birth, considers herself transsexual. Nobody (as far as I can see) disagrees with that. This much will become apparent as you read on. Rhia's main problem isn't with being most probably transsexual. Her problem concerns where she lives.
In Wales, access to funding for medical help dealing with the needs of transsexual people is controlled by a body called "Health Commission Wales" (HCW). And if Rhia's account of her "care" by HCW is even only half true, my personal recommendation to other trans people living in the Principality would be to get out of the place as quickly as possible and join the 21st Century.
For what Rhia describes in her emails and bulletin board postings is Abuse, pure and simple. Care simply cannot be used to describe any part of the handling she has received to date. It cannot be described as "treatment" either.
I'm confident that you'll share my conclusions as you read on.
Rhia first wrote to me about six weeks ago in August -- clearly quite distressed -- attaching an account she had already posted on a bulletin board, looking for help.
Describing her twelve months of go-nowhere treatment as "Sick and Twisted", Rhia began her tale by explaining the point that her lengthy saga had reached,
"I have just received the most sick, twisted, and in all ways uncaring and wrong decision on whether or not Health Commision Wales will allow funding for my referal to Charing Cross"
As you read the rest of this account, it is worth keeping in mind that Health Commission Wales acknowledge their controlling responsibility for access to treatment for what they call "Gender Identity Disorder Services" (GIDS). In January 2005, they published a policy document for this under the web site of the devolved Government in Wales, the "Welsh Assembly". The policy, presented by the Acting Deputy Medical Director and the Assistant Commissioner for Mental Health Services, can be found at:
The introduction to the HCW policy for GIDS looks equitable enough:
"[This] paper aims to ensure that those most in need and able to benefit are given equitable access to the service across Wales."
The goal is supposedly clear too:
"This paper presents Health Commission Wales (HCW) policy on Gender Identity Disorder (GID) services for adults, including sex reassignment surgery (SRS). It addresses the criteria for selection for genital and breast surgery, and the provision of other clinical interventions to assist feminisation or masculinisation."
As you'll see shortly, however, the reality for Rhia has been very different to these fine-sounding words. However, I'll let Rhia introduce the story in her own words:
"Last August, [Health Commission Wales] refered me at the request of my local psych to a specialist cpsych in Birmingham for an assessment."
"The psych in question was very bizarre and I was in two minds as to whether to report him for his behaviour or bear with it to hopefully get treatment faster."
"He started psychoanalysis without HCW offering funding for treatment, which promptly stopped thereafter."
At present the question of how people should first be assessed when presenting with gender issues is not approached with any consistency across the country. The Commissioning Guidelines recently put forward by the Parliamentary Forum on Transsexualism (chaired by Dr Lynne Jones MP) have this to say on the topic:
"Gender Dysphoria is likely to present initially as a self-diagnosis. The individual may speak to his or her GP about the discomfort experienced historically and currently with the gender role in which he or she is living. However, the individual's initial request for help may be via any other member of the caring professions with whom that individual feels able to share his or her concerns. Whatever initial route is taken, the GP should endorse the treatment pathway and ensure funding from the NHS. The GP may refer the individual to a specialist clinician. This will usually be a psychiatrist, clinical psychologist or any other specialist working in the field of transsexualism. This referral may well be 'out of area', but should be within reasonable travelling distance. A first appointment at the service to which an individual is referred, should occur in accordance with NHS waiting list times."
Source : "Guidelines For Health Organisations Commissioning Treatment Services For Individuals Experiencing Gender Dysphoria And Transsexualism" - Parliamentary Forum on Transsexualism, April 2005. Para 8.2 http://www.pfc.org.uk/medical/index.htm#healthauthority or via http://www.lynnejones.org.uk/transsex.htm#forum.
Unfortunately the Parliamentary Forum's commissioning guidelines have no official force as yet, though they were drafted and agreed with the active involvement of some of the leading clinicians practicing in Britain at the time. The separate Royal College of Psychiatrists Committee headed by Dr Kevan Wylie, charged with formulating the British equivalent to "Standards of Care" says practically nothing about referral in its current pre-consultative draft.
The HCW Policy on "GIDS" says this, however:
(8.1.1) Welsh GPs will refer the patient initially to a local NHS consultant psychiatrist.
(8.1.2) The local consultant psychiatrist will assess the patient, and if appropriate, will refer the patient for a second opinion from a Welsh NHS consultant psychiatrist, preferably with an interest in gender disorders.
(8.1.3) Following the receipt of a second supportive opinion, the patient will be referred by the original consultant to an HCW approved GID service for Welsh residents, following prior funding approval from HCW's NPSA Panel.
>From Rhia's account, therefore, she had certainly passed through step 1 of the above process. She had been seen by a local (general) NHS consultant psychiatrist. As a result of that consultation Rhia had then apparently also been referred to a second consultant psychiatrist -- although why it should be necessary for her to travel as far as Birmingham for that is something of a mystery. The second consultant seems to have decided to treat her to a round of Psychoanalysis, which seems odd given that no part of HCW's policy recommends this in the case of Gender Identity. There is no indication of whether the person concerned had "an interest in gender disorders" .. though, quite frankly, taxpayers funding the National Health Service should be entitled to be seen by someone whose qualifications and experience exceed mere "interest". At least, however, we must assume that the Birmingham psychiatrist thought Rhia had a gender problem, otherwise why offer to treat it? This being so, the logical next stage in Rhia's treatment path should have been (8.1.3) above - involving a decision to fund referral to "an HCW approved GID service for Welsh residents".
Rhia continues her tale:
"It then took my local psych 4 months to request funding for a referral to Charing Cross, which he did in May of this year, but he didn't give a full report of all the clinical information. HCW turned me down."
"At the same time that I found out that my referal request was turned down (GID services carry - apparently - the lowest priority of all), I found that my psychiatrist had changed, but I had to find out all this for myself as nobody had seen fit to tell me any of it."
"At the beginning of June, my new psychiatrist appealed on my behalf, telling them (such is the truth) that in no uncertain terms I was at risk of serious self harm and/or suicide, and that this was as a result of a depression at the root of which is my gender dysphoria. She stated in no uncertain terms that I am unable to integrate in society in any real way and that I would not get any better at all until I recieved a sexual re-assignment (the full works)."
"That was the beginning of June. HCW claimed repeatedly that the decision wouldn't take long, and in the meantime kept moving the goalposts. They've put me through a hellish mental torture since then while I have been desperately trying to find out any information I can from them."
Being messed around by an NHS system that's dogged with changes of faces and responsibilities is not unique to trans people of course; nor is it unique to Wales. That's just the nature of the NHS, within which Mental Health Services are often the worst offenders of all, since their "customers" are usually in the least likely condition to complain.
It is a mark of the lack of qualification of Rhia's carers that they should think a suicide risk to be a good way of emphasising the urgency of need for referral to a gender specialist. The irony is that it is quite the reverse. Having a "suicide risk" label attached is the most reliable way to NOT be treated by a Gender Identity Clinic. People presenting with such a risk are normally expected to receive treatment to fully mitigate that risk first before any treatment for their gender issues can begin. Rhia's local NHS team was therefore setting her up for the classic "Catch 22" of gender treatment:
To obtain referral funding to a GIC we need to say you're suicidal
But if you're suicidal the GIC won't treat your gender identity issues.
Note that already, by this time, Rhia had been passed around the system from before August 2004 till June 2005. She had been seen by three psychiatrists, one who bungled her case and one who tried to treat her with snake oil (psychotherapy). Yet she had still not yet been seen at all by anyone actually qualified or experienced in treating people with gender identity issues.
In August 2005 Rhia suffered the blow which prompted her to tell the world about her experiences. On August 17th she wrote,
"Today, I recieved a call from them regarding a decision on my case. Apparently, I meet all the criteria for funding, but unfortunately because of the low priority policy, I've been having to fight to get it - and I still don't have it. They would apparently consider me to be an exceptional case, depending on this...
... They are asking my local psych to obtain a second opinion - not on my GID - three different consultant psychiatrists have already diagnosed that I have a serious case.
No. They want a fourth psychiatrist to give a second opinion on how likely I am to kill myself or cause myself serious harm."
And she adds,
"Surely they've tortured me enough already?"
"Do they want me to die out of the way to avoid paying out?...."
You can understand Rhia's dismay after having already come so far, taking more than a year just to have her diagnosis confirmed, and then to be told she wasn't yet sick enough to be treated. Maybe this is what HCW actually mean in their policy when they state:
(8.1.6) Referrals for initial assessment for NHS treatment should be prioritised according to clinical need and in consonance with HCW's prioritisation policy."
Except of course that, by now, this was far from an initial assessment.
Some of the thinking at work in HCW can be seen in the published results of a consultation among health agencies in Wales. See http://tinyurl.com/7txyl.
Following publication of the Commission's policy document in January 2005, a decision was made the following month to seek the views of Local Health Boards and the Welsh Trusts about the priority to be accorded to commissioning for transsexual people; whether the policy's criteria were clear, workable and equitable; and whether the bodies would support the policy's application.
Overall the committee received 13 responses. None considered commissioning to be a high priority. Two thought such services shouldn't be a high OR a low priority. Three were clear: they thought it was a LOW priority; and eight had no opinion at all. Notably the consultation defined a "Stakeholder" in terms of local health boards and NHS Trusts. No mention of Service Users at all. So that's a big welsh thumbs down for people like Rhia.
One responding authority is even quoted as saying:
"We (NHS Trust) would not support an application for this service to be established and maintained within Wales"
Among the implementation options considered in the consultation review were:
"Option 1: no gender identity disorder provision for Welsh patients"
Which the authors considered to have:
"No financial implications to HCW"
Presumably the committee, in their ignorance, were not aware of the Court of Appeal decision in the case of A.D. & G vs NW Lancs Health Authority (July 1999), in which the Court upheld an earlier High Court opinion that a refusal to fund was "unlawful and irrational".
In practice, the committee concluded that their recommended course would not be "Option 1", but:
"Option 2: implement the policy only in exceptional circumstances, considering each case on an individual basis"
Nevertheless, it was still perhaps remarkable that the reviewers could conclude with confidence that,
"There are no known issues relating to the Human Rights Act and/or Welsh Language Act, however the Office of the Counsel General have been asked to consider any legal implications of such implementation."
As well they might!
In fact my own response to Rhia at this point WAS to give her the details of a string of legal practices recommended by contacts at "Liberty", the UK Human Rights group.
Understandably, many people in a position like this may feel that they don't have the stamina at that point to contemplate a long and stressful legal battle. If at all possible it IS best to try and avoid such things, as the process can take years and (during that time) the person who feels they've been neglected or abused is unlikely to get any closer to getting treated.
I also recommended that she should consider engaging the help of her MP or Welsh Assembly Member. Sometimes elected representatives can be very effective at knocking heads together at a local level, or going over those heads to encourage the application of general NHS policy on access to healthcare, as it is intended to apply to every British citizen. Again, however, like many people who just desperately want help from the NHS, Rhia wasn't convinced this would help in her case. Given the extent to which people in authority had already failed to help her, I can fully understand her reluctance.
Rhia's story doesn't end there, however.
A few days after the refusal to fund her referral to Charing Cross, she had another appointment with the local psychiatrist's team. Her normal psychiatrist was away ill, but she saw one of his colleagues instead. In her words:
"I informed him that HCW was looking for a second opinion on my state of mind, and that they had stated that his opinion should be sufficient even though he was on the same team. He claimed that he was unable to give such a report BECAUSE he was on the same team. I repeated that HCW had said that this was ok, and still he refused."
Just to remind you, in case you've lost the plot at this time -- Rhia was told she needed a second opinion on whether she would harm herself or become a suicide risk if not referred to Charing Cross. She was therefore not going to get anywhere unless someone would offer to give that assessment.
"He then proceeded to try to pathologise my depression, and asked me why I thought I was depressed"
With the clinical agenda now defined by glorified accountants, perhaps this was a starting point for giving Rhia the pathology which the funders wanted to hear. However, as Rhia says:
"This is old ground. These were the sort of questions I was first asked three or four years ago - the fact I have depression is not really in question. It's been diagnosed fairly thoroughly."
Indeed, could anyone fail to be depressed having been so thoroughly neglected already by the system? Let's remember what Rhia wanted. She wanted to see someone with specialist background in dealing with the issues which no-one denies she had. Yet, for years, she had simply been passed like a parcel from one person to the next -- each one asking the same old questions and getting her no nearer to an actual treatment. Now she was being asked to collude in being diagnosed with a mental illness that would ultimately disqualify her from the treatment she sought. I think a little NHS-induced depression could be understood in such circumstances.
"I then suggested that my visit, which I had put so much hope in, had been a complete waste of both my time and his. He disagreed because apparently "At least now we know how you are feeling".
In exasperation she writes,
"Surely that was fairly obvious?
The system hadn't finished with her yet though...
"A few days ago, I called my psychiatrists secretary for more information on what correspondance there had been between themselves and HCW."
"My psychiatrist informed me that she had seen HCW's request for a second opinion, and had written back to them informing them that they would have to provide funding for a referral to get one".
HCW had written back to Rhia's psychiatrist explaining what they wanted (and what she had tried to simply explain to the psychiatrist's colleague). Accordingly, the psychiatrist sent Health Commission Wales a report stating that Rhia was depressed and was getting worse.
Rhia now has to wait for a response to that. However in the meantime she has understandably decided after all these years that she will simply self medicate with HRT.
As she says,
"It's something that I've told EVERYONE would happen if there was no progress, and now it has."
She told the Commission themselves when they explained that an appeals panel would not be able to even sit and consider her case until the middle of 2006. Her account of the conversation goes like this:
Rhia: "So you're saying that the appeals panel might not sit even untill the beginning/middle of next year?"
Rhia: "OK, so I've spoken to my GP, and he is more than happy to prescribe HRT on the reccomendation of a private psychiatrist."
HCW: "If you go along that route you need to consider it carefully as it will mean that you won't be able to get help on the NHS in future."
Rhia: (slightly annoyed) "Why?"
HCW: "Well it's queue jumping, that's why we have this policy on not allowing funding for those who have previously gone private. It's just not fair on those people who have been waiting patiently."
Rhia: "How is it queue jumping? It's me happily waiting in line, and while doing so taking action to make my life a little more bearable untill such time as treatment is
available. I'm not asking you to pay for it, and in fact it would be saving you money"
HCW: "It's still queue jumping"
Rhia: (sighs) "OK, so if I self medicate by buying hormones on the internet, and deciding on my own regimen, that will still allow me help on the NHS because it's not private treatment?"
HCW: "That's correct".
The last part is, of course, breathtaking.
Health Commission Wales -- the body with a statutory duty for the care of ALL citizens living in its jurisdiction -- appears to be advocating a course of action generally regarded to be very unwise indeed, if Rhia's account and recollections are true. Not only do you not know the quality or contents of what you are buying from Internet Pharmacies but to take hormones and anti-androgens without proper screening and regular checks is positively dangerous for some.
On the bright side, Rhia reports feeling a lot better and experiencing improved emotions as a result of finally obtaining a key to what she simply wants to do. Her former symptoms, as you might expect, are those of being neglected and abused by the system, rather than the symptoms (or contraindications) of any gender identity related "disease".
Starve a man and they'll get ill. Treat the problem -- feed the hunger -- and they'll get better. It's a simple equation. Yet, in Rhia's case, Psychiatrists and Commissioners appear to have become the problem, denying the cure. That is why, at the outset, I characterised this story as one of abuse and neglect. In any other context that is what such actions would be called.
Rhia's case is far from unique. Many readers of PFC-News can relate past experiences of a similar kind. You may even be going through them. I'd certainly like to thank Rhia for her kind permission to write about her experiences almost word for word. However, other than resorting to lawyers, I'm very sad that we cannot at this time offer a lot of hope.
Worse, in Rhia's case, she is likely to suffer the cruellest of further abuses should she finally win the dubious pleasure of treatment by Charing Cross. For they are likely to tell her for starters that they won't even BEGIN to treat her unless she stops taking hormones and goes back to square one for THEIR evaluation.
The saddest thing of all is that the current draft of the Royal College of Psychiatrists' guidelines (or "Standards of Care") don't even begin to address the kind of problems I'm describing here. That's because the "experts" gathered together to work on such a vitally important document have so far been unable to think outside of their own little sphere of expertise.
Endocrinologists write "standards" for administering hormones. Surgeons write "standards" for when it's safe for THEM to cut people up. Speech Therapists put in a good word for enabling people to be able to speak right.
But NONE of them have even considered in committee the vital overriding requirement for ensuring that care takes place in a joined up fashion from the first point of contact with the system till the last -- including referral and funding. They've been working for more than two years and it has not even seemingly occurred to them.
There are many reasons why the RCPsych committee have already been told by the trans stakeholders that their efforts to date are unsatisfactory. Much of that concerns the attempts by some Doctors to write in provisions to preserve and tighten their grip on a monopoly of the worst kind -- a monopoly which seeks to prohibit choice by preventing alternative forms of provision.
The political attitudes are visible in the bizarre conversation which Rhia reports -- "Go private and our bit of the NHS won't treat you" (an illegal threat, by the way). The same attitudes are also there in the well-reported circumstances that are bringing trans people's most trusted independent therapist before a GMC hearing next year. The consequences could see him struck off.
As Rhia has discovered, the ultimate safety net for trans people who can afford it is to abandon the seriously politicised madhouse of the NHS and construct their own care pathway privately.
However BEWARE! Unless you can finish what you started that way, the NHS has a very brutal way of dealing with your impertinence. The Government favours choice and autonomy. HCW bureaucrats evidently think it should be punished by the withdrawal of the right to NHS treatment paid for in taxes.
This is why the process of dealing with the Committee set up by the Royal College of Psychiatrists and the Royal Society of Medicine is such a vital activity for the future of trans people in Britain.
With the authority of not one but two Royal Colleges, the document eventually published by Kevan Wylie's committee can either be a positive instrument for change for a generation to come, or it may be the mechanism for controlling trans people's lives even more closely. They can describe real standards for caring for us throughout the health service (even in the face of financial restraints). Alternatively, by omission, they can mandate petty officials and disciplinarian psychiatrists to go on limiting choice. They can allow monstrous administrations like HCW to happily keep people going nowhere for years on end, as they really DO become mentally ill as a result of institutional abuse.
Which will it be? Well, that's hard to call at the moment. However if anyone thought that the fight was over with the passage of the Gender Recognition Act, it isn't. The new fight now is about people who may never even get to qualify for gender recognition if they can't get referred to a GIC for the all-important diagnosis.
October 1st, 2005
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