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Press For Change
BM Network
London WC1N 3XX
http://www.pfc.org.uk/
Email: letters@pfc.org.uk
Dr A J Sudell
Deputy Director of Public Health and Health Policy
North West Lancashire Health Authority
Westham Park Hospital
Derby Road, Westham
Nr. Kirkham,
Lancashire, PR4 3AL
30 November 1999
Dear Dr Sudell,
Policy for the Commissioning of Services for People with Gender Identity Problems
Press for Change has been passed a copy of the consultation document regarding the commissioning of services for people with gender identity problems. We understand that this policy has the status of a consultation document and accept that it represents proposals for consultation only, and in the light of that process we have attached some comments on particular aspects of the policy.
Nevertheless having given the document the full consideration it requires, we are very disappointed with its tone and we find that it contains major legal and medical defects. We find that in our view the policy sets out to treat patients presenting with gender dysphoria in a way in which patients with other conditions would not be treated and therefore consider it discriminatory. We have also consulted with the solicitors who represented A, D & G in the courts and are very surprised that they were not involved in the consultation process. This is clearly a policy which determines the treatment of their condition. In the circumstances, we must strongly recommend a complete reappraisal of the policy approach to this issue. As such, we think that the problem needs to be re-addressed with involvement of the major support organisations and other experts in this field.
The document has many problems in its drafting so rather than attempt specific comments and proposals for alteration, we would ask that you allow GIRES and its associated organisations including Press for Change, the Female to Male Network, CHANGE, the Gender Trust and Mermaids to put together a consultative team of experts. All these organisations work closely with the teams at Charing Cross and St James’s, as well as having between them over 25 years knowledge and expertise in the provision of services for transsexual people. Given a six-month time-scale they will be able to draw up a new set of Commissioning Guidelines for your consideration. Such a process would enable the development of a ’state of the art’ policy that would meet the needs of local Health Authorities such as yourselves, but which would also have the support of the main organisations in the community, and the medical professionals who work in the field of gender identity problems. In this way, it would also be far less likely to lead to the sorts of difficulties presented in the original court proceedings in this case.
We feel that such a policy could then provide a model of best practice and excellence in care for all Health Authorities, whilst also being flexible enough to adapt to the ever-changing National Health Service provision that is available, and the regulation imposed upon Health Authorities. Our aim is to ensure that transsexual people are not discriminated against in terms of the health care provision they receive, whilst ensuring that this is provided in an appropriate yet cost-effective manner.
We hope you will feel able to accept this proposal by GIRES, and ourselves and we look forward to working with you in the future.
Yours sincerely,
Stephen Whittle, Ph.D, MA, LLB, BA
Vice President of Press For Change
- Failure of the Policy to unambiguously recognise gender dysphoria as an illness
- The draft policy is discriminatory
- The proposed method of treatment is not cost-effective
- The proposed separation of funding decisions on different stages of treatment is perverse
- Administratively overriding clinical assessments
- Medical inaccuracy
- Breaching a patients’ privacy
- Breach of Patient’s Charter
- Overriding “get-out” clause
It is difficult to construe this draft policy as compliant with the rulings of the courts in the A, D and G v NW Lancs Area Health Authority. In the judgment of the Court of Appeal, Lord Justice Auld opened its conclusions by noting that:
“…the Authority has acknowledged in its evidence before Hidden J and in its stance on this appeal that transsexualism is an illness. But its recognition of it in its two Policies is at best oblique and lacks conviction”.
He went on to stress that:
“It follows that its Policies should, but do not, properly reflect that medical judgment and accord the condition a place somewhere in the scale of its priorities for illnesses instead of relegating it to the outer regions of conditions which it plainly does not so regard.”
Overall, this draft appears to suffer from the same fundamental flaws: it seeks such stringent and exceptional tests for providing treatment that it can only be regarded as continuing to relegate gender dsyphoria “to the outer regions”.
In the short time available for consultation, it has not been possible for us to complete a comprehensive analysis of the draft policy. However, under the headings below, we set out some of the most serious ways in which the draft policy fails to meet even the minimum criteria set by the Courts, and falls far short of providing a mechanism for a cost-effective treatment programme designed to meet the needs of patients.
There are some good points in the proposed policy, which Press For Change would welcome, such as the requirement that “the patient is aware of the side effects and complications of any medications, and the limits of knowledge about long term side effects”. We believe that this should be required in all areas of clinical practice, and welcome the authority’s insistence in it for its gender dysphoric patients.
However, the overall thrust of the policy appears to us to be designed to allow the Health Authority to refuse funding for treatment in as many cases as possible: there is no single category of patient who could be assured of funding under the proposed criteria.
In particular, we note the following points:
1. Failure of the Policy to unambiguously recognise gender dysphoria as an illness
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In his conclusions, Auld LJ ruled that:
“… given the Authority’s acknowledgment that transsexualism is an illness, its policy, in my view, is flawed in two important respects. First, it does not in truth treat transsexualism as an illness, but as an attitude or state of mind which does not warrant treatment. Second, the ostensible provision that it makes for exceptions in individual cases and its manner of considering them amount effectively to the operation of a “blanket policy” against funding treatment for the condition because it does not believe in such treatment.”
In paragraph 2.1, the draft policy does recognise transsexualism as an illness, and notes that it “recognises expert medical advice that assessment with a view to possible gender reassignment surgery is the ideal medical strategy for some patients with gender dysphoria illness” (3.2.iii.c). However, it goes on to suggest that “Other patients are best managed by techniques leading to psychological adjustment without physical intervention”. The medical literature cited in the draft policy does not offer any recommendations as to how such “psychological adjustment” may be achieved, and no evidence is offered as to its effectiveness.
Indeed, in Briefing Note 2, “Effectiveness of treatments for gender identity difficulties”, the authority goes on to claim that all the evidence cited must “cast doubt on the effectiveness of the treatment”. However, the method of proof chosen by the authority, of random controlled trials, may not be ethically applicable in all fields of medicine, and we are advised that it could not ethically be used to assess the effectiveness of not treatment leading to possible surgery. Analysis of case studies would appear to be the most effective applicable means of assessing this form of treatment, and the authority dismissal of studies of case series of this illness echoes Auld LJ’s criticism of Dr Sudell’s affidavits as
“clearly evidencing its scepticism of the notion that transsexualism is an illness worthy of medical attention beyond psychiatric reassurance”
2. The draft policy is discriminatory
The authority proposes to assess in each case a wide range of factors which it could nor possibly expect to assess in all the cases it considers. It proposes to assess in each case whether
“the level of distress which the treatment seeks to remove in this patient is greater than the amount of distress that could be removed by investing in other groups of patients competing for the same development resources of the Health Authority.” (section 1.1.i)
Unless the authority has a consistent and proven methodology for making such assessments, this test is meaningless and serves only to discriminate against patients with gender dysphoria. In view of the resources that would be required for such an assessment, we doubt that it could be conducted effectively and fairly in each case. It would be more appropriate to define categories of case where treatment would generally be provided.
The authority also proposes to require that:
“The patient will never have previously been assessed at and discharged from a gender dysphoria clinic, within the National Health Service or otherwise.” (section 3.1.x)
It is hard to construe this requirement as consistent with the treatment of a condition recognised as an illness. Many different factors, including clinical error, unsatisfactory treatment or major life events outside the patients’ control may lead to discharge from a clinic; none of those should preclude further assessment or treatment if it is deemed necessary by the referring clinicians.
3. The proposed method of treatment is not cost-effective
The Charing Cross GIC is the most expensive in the UK, with typical costs of treatment from assessment through to surgery for a male-to-female transsexual patient in the order of £20,000. This is approximately twice the cost of equivalent treatment in the private sector; other NHS facilities are also much cheaper, and work to high standards. The authority’s proposed exclusive reliance on Charing Cross (section 2.6) is hard to justify in light of its repeated emphasis on its limited funding. Referral to private sector facilities or to other NHS facilities might be a more effective use of a limited budget.
In addition, the detailed assessment proposed of each individual case (in section 3 of the draft) would be administratively cumbersome and expensive, since the criteria provide no general guide as to which patients should be funded for treatment. If the policy were implemented, the authority would have to commit considerable administrative resources to the funding decision in each individual case.
4. The proposed separation of funding decisions on different stages of treatment is perverse
In addition to the excessive cost referred to above, the authority’s proposal in section 2.5 (detailed in section 3) to require fresh approval for funding each of three stages of an individuals’ treatment open the possibility of declining further treatment apart way through the treatment process, against clinical advice. That would clearly be a tragic situation for the individual concerned, and could be injurious to health: for a patient to have completed one phase of the process and without being assured of a reasonable prospect of continuing to the next phase could even be construed as negligence.
In this respect, the draft policy also contradicts the clinical policy of the major Gender Identity Clinics, which generally try to avoid this situation by requiring that authorities commit at the outset to funding the full treatment process if the clinicians decide that it is clinically necessary.
5. Administratively overriding clinical assessments
The authority proposes in many instances to allow administrative staff to second-guess the assessments of the clinicians who have actually met and treated the patient.
Whilst it is clearly appropriate for the authority to evaluate the clinical assessments, it would be clinically perverse for the authority to make its own further assessments.
6. Medical inaccuracy
The policy demonstrates a misunderstanding of the medical procedures involved, in several respects, including:
- In section 3.3.iv.d, it would require that
“the patient is aware that the procedure will irreversibly destroy his/her reproductive capacity in either gender”.
However, some procedures, such mastectomy for female-to-male patients, have no effect on reproductive capacity.
- Section 3.3.iii also requires that before any surgery is authorised,
“the package of treatments will have been defined and agreed by the Health Authority. The patient will have been advised that subsequent funding for treatments not included within the package is unlikely”.
This fails to recognise that it may not be clinically possible to define in advance the precise program of treatment required. For example, caution is now generally advised before proceeding with a hysterectomy for female-to-male transsexual patients, and if required, it may not be necessary for some years. It would be clinically perverse for a physician to be required to make a definite decision on whether hysterectomy is required in an individual case seeking only breast removal, when the evidence may not be available at that point. Likewise, breast augmentation is frequently recommended for male-to-female transsexuals, but a final decision is normally held until after vaginoplasty or orchidectomy, because significant further breast growth may, in some cases, occur at that point.
The same section also contra-indicates treatment on psychiatric grounds:
“The patient’s psychiatric history (recognising that present or current serious mental illness (other than gender dysphoria itself), suicidal tendencies or a history of suicide attempts or genital self-mutilation) may require caution before proceeding with gender reassignment.” (section 3.4.iv)
However, gender dysphoria is an exceptionally stressful condition, and is frequently destabilising for the individual involved unless treated. In its previous policy, the authority explicitly recognised the risk of mental illness if treatment was not provided; it is perverse to now invert that requirement, and to unreasonably problematise issues which may be side effects of gender dysphoria.
The authority would disallow specialist assessment for those assessed previously:
“The patient will never have previously been assessed at and discharged from a gender dysphoria clinic, within the National Health Service or otherwise.” (section 3.1.x)
However, there are many cases of which we are aware in which a patient who had previously been so discharged later sought and received treatment which was successful. All such cases should be assessed on the basis of the actual clinical need of the patient, whose gender dysphoria may have grown more severe with the passage of time.
- In section 2.3, the draft proposes that:
“The Health Authority recognises expert medical advice that assessment with a view to possible gender reassignment surgery is the ideal medical strategy for some patients with gender dysphoria illness. Other patients are best managed by techniques leading to psychological adjustment without physical intervention.”
No evidence is adduced of any available treatment for patients with gender dysphoria other than “assessment with a view to possible gender reassignment surgery”; we are unaware of any practitioners offering “techniques leading to psychological adjustment” without assessment. We not surprised that the authority is not able to identify where such treatment would be available.
7. Breaching a patients’ privacy
The authority proposes to consider “The comments of the patient’s spouse and relatives (such comments will not actively be sought, but will be considered if received)” (section 3.4.ii), and “the patient’s previous marital history” (section 3.4.iii). It also proposes that “It may also seek to confirm that a decision to approve funding will be in the best interests of the patient and the patient’s community” (section 3.4). These proposals to allow or encourage third parties to intervene in the decisions about the treatment of an individual are likely to be construed as a breach of the patient’s rights to privacy under the Human Rights Act and is likely to contravene the GMC Code on Confidentiality to which doctors are obligated to adhere. The guidance from the Department of Health on the “Protection and Use of Patient Information” (Department of Health 1996) states quite clearly the limits to which patient information can be used, and this proposal does not fall within those limits.
In addition, they may require medical practitioners to disclose confidential information to third parties not professionally involved in their patient’s treatment. This could constitute a further breach of the above.
To require, as the Health authority proposes in section 2.1, that patients must consent to such breaches of privacy, may in itself be illegal; it also breaches the Patient’s Charter (see below).
8. Breach of Patient’s Charter
The draft policy contravenes the Patient’s Charter in several instances:
- Under “Access to services”, the charter provides that
“You have the right to: receive health care on the basis of your clinical need, not on your ability to pay, your lifestyle or any other factor;”
The proposal to assess such factors as a patient’s marital history contravenes this right.
- The same section of the Charter again confers the right “to be referred to a consultant acceptable to you”; but the proposed draft policy appears to restrict or deny patients the choice of consultant, by its proposal to “normally commission” treatment from the Charing Cross GIC.
- Under “Providing information”, the charter states:
“You have the right to: have access to your health records, and to know that everyone working for the NHS is under a legal duty to keep your records confidential;”
The proposed policy would breach this right if it led to consultations with third parties such as “the patient’s community” (section 3.4), because such parties could be meaningfully consulted only if confidential patient details were made available.
9. Overriding “get-out” clause
In section 3.4, the authority proposes that
“In addition to the eligibility criteria listed above, the Health Authority may consider other relevant issues at each of the three stages…”
The policy would thereby provide a mechanism for refusing treatment in each and every case, as was the authority’s previous practice. There can therefore no assurance that this policy would be any different in effect than the previous policy.
Prepared for Press For Change by Claire McNab, Vice President.
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