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Midlands and East Specialised Commissioning Group (East of England Office)

UPDATED POLICY

FOR THE COMMISSIONING AND TREATMENT OF PEOPLE WITH GENDER DYSPHORIA

Original Author(s) / Owner(s)

Updated by

Mike O’Keeffe & Carole Theobald, EoE SCG

Denise Clark

Version No. V13

Latest Review January 2012

Updated April 2012

Next Review Date

September 2012

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Contents Page

Glossary of Terms and Abbreviations 3 Purpose and Aim of the Policy 4 Legal Obligations and Commissioning Priority 4 Principles 5 Young People 5 Service Issues and Care Pathway 6 Guidance on Treatment 11 Commissioning and Funding Issues 12 Outcome Studies 15 Cost of Treatments 15 Complaints 15 Review 16

Appendices Appendix 1 – References 17 Appendix 2 – WPATH Standards of Care 18 Appendix 3 – Gender Identity Service – Commissioned Service Providers 19 Appendix 4 – New Patients Care Pathway – Entry to the RLE 20 Appendix 5 – Care Pathway – Direct referral for gender reassignment surgery 21 Appendix 6 – East of England PCTs to which this policy applies 22 Appendix 7 – Notification Fax 23 Appendix 8 – Gender Dysphoria Individual Patient Agreement - Surgery 24 Appendix 9 – Status of Policy 27

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GLOSSARY OF TERMS AND ABBREVIATIONS M&ESCG Midlands and East Specialised Commissioning Group F t M Female to Male GID Gender Identity Dysphoria GIC Gender Identity Clinic GP General Practitioner GRS Gender Reassignment Surgery Imperial Imperial College Hospital M t F Male to Female NICE National Institute for Health and Clinical Excellence NHS National Health Service PCT Primary Care Trust RLE Real Life Experience WHO ICD 10 World Health Organisation International Classification of Disease Version 10 WLMHT West London Mental Health Trust WPATH World Professional Association for Transgender Health's Standards of Care for Gender Identity Disorders

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1. PURPOSE AND AIM OF THE POLICY 1.1 The purpose of this policy is to promote good practice guidance both in the commissioning of

services and treatment options for patients who have Gender Dysphoria or Gender Identity Disorder (GID).

1.2 This policy enables a consistent and equitable approach to accessing services across the east of England.

1.3 This policy describes the provision of assessment and treatment of patients registered with General Practitioners in the east of England PCTs who present with gender dysphoria. It describes the criteria for referral to GID services and how funding will be agreed by the Midlands and East Specialised Commissioning Group (East of England Office) (M&ESCG)

1.4 The policy aims to ensure that those most in need and able to benefit from assessment and treatment are given equitable access to the service. However there is no commitment as a result of this policy to provide services to every patient who seeks GID services or to meeting every request for a service from a patient diagnosed with GID or on a GID care pathway.

1.5 It should be noted that once a patient has entered the care pathway then normally, there will be no further funding approvals requested from the SCG. This includes that part of the pathway between the completion of the Real Life Experience (RLE) and a referral for surgery.

1.6 The only occasion where such liaison will take place is where a request has been made to approve a surgical procedure which is not on the formal approval list or where a patient accesses the treatment pathway seeking a referral for surgery. The M&ESCG will keep local Primary Care Trusts (PCTs) informed of progress as appropriate.

1.7 This policy addresses commissioning of gender dysphoria services for adults i.e. patients over the age of 18 years. It does not cover the commissioning of gender dysphoria services for children and adolescents (see the section on young people below). These conditions are different from those seen in adults due to the physical, psychological and sexual developmental process and the greater variability in outcome.

2. LEGAL OBLIGATIONS AND COMMISSIONING PRIORITY 2.1 PCTs take into account the legal position in relation to this condition and this policy is

underpinned by recognition that Gender Dysphoria is a bone fide medical condition where, subject to the conditions stated in this policy, NHS funded treatment should be offered to GID patients. The priority granted to funding services for this patient group has been developed in accordance with the PCTs prioritisation process. However each PCT reserves the right to seek a review of this policy at any time. Patients are entitled to seek treatment or the continuation of treatment in accordance with any PCT policy in force at the time.

2.2 At present there is no NICE (National Institute for Health and Clinical Excellence) guidance on the management of Gender Dysphoria. This policy will be amended in the light of any future guidance.

2.3 The recent NHS ‘Guidance for GPs, other clinicians and health professionals on the care of gender variant people (Department of Health, May 2008)’ states, “People are entitled to treatment for transsexualism by law as stated in the case of North West Lancashire Health Authority v A, D & G, Court of Appeal, 1999 (see the forthcoming NHS publication A guide to trans service users’

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rights). This is not a condition that clinicians may decline to treat.

The guidance can be found at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919 3. PRINCIPLES 3.1 The principles underpinning this policy are:-

There will be adherence to the Gender Recognition Act, 2004

All services, whether these be at the local level or in tertiary centres should ensure that equality policies include transgender people and address issues such as transphobia from staff and other people

Training of staff on equality should include issues for Trans People

The use of the name and title of the person (Mr, Ms, Mrs, Miss) should that which the person prefers

Trans People may have specific personal care needs, which need to be handled sensitively e.g. use of toilets and bathing

Confidentiality issues around someone’s trans status is very important

Services should adopt good practice and person-centred care

Gender is about how someone wishes to be regarded as a person – it is not about the physical body

4. YOUNG PEOPLE 4.1 Gender dysphoria usually starts in early childhood, although issues may also start developing

later in life. There are likely to be different service options depending on whether the person is under 18 or over. The service issues and care pathway for adults (over 18) is set out in the rest of this policy.

4.2 Young people under 18 should be referred to a child and adolescent Psychiatrist in the first instance. The only option available to a local CAMHS consultant is to refer the young person to the Gender Identity Unit at the Tavistock and Portman NHS Trust1.

4.3 It is possible that the commissioning of this service may become part of a national portfolio. Until this is confirmed PCTs should continue to consider, and where appropriate, approve funding for specified treatment on an individual case basis. This would be in accordance with their local commissioning strategies and also arrangements with the Tavistock and Portman Trust.

1 This service is provided in conjunction with the Department of Paediatric & Adolescent Medicine, University College

London Hospitals

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4.4 The SCG does not have a contract or service agreement with this Trust and other providers of services are not considered to be part of the under 18’s treatment or care pathway.

4.5 Different treatments may start at various ages and stages 2. Normally, hormone treatment will not be started until puberty has finished and surgical treatment will not be considered until the young person has reached the age of 18. Therefore clinicians should not make referrals to the GIC until the patient has reached the age of 18.

4.6 Referrals made in anticipation of a patient reaching the age of 18 will not be considered until after the patients 18th birthday.

5. SERVICE ISSUES AND CARE PATHWAY

Definition 5.1 Gender Dysphoria, according to the WHO ICD 10, Appendix 1 is a condition where the patient

experiences a desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one’s anatomic sex and a wish to have hormonal treatment and/or surgery to make one’s body as congruent as possible with the preferred sex. Classed as a psychiatric condition, the exact cause of Gender Dysphoria is unknown. It may be diagnosed when the transgender identity has been present, persistently, for at least two years. Diagnosis

5.2 The ICD-10 diagnosis of transsexualism (F64.0) in adults requires three criteria to be met:-

The desire to live and be accepted as a member of the opposite sex, usually accompanied by the wish to make his or her body as congruent as possible with the preferred sex through surgery and hormone treatment

The transsexual identity has been present persistently for at least two years The disorder is not a symptom of another mental disorder or a chromosomal abnormality

5.3 Clinicians may also refer to DSM-IV, which states that GID “is a medical condition in which there

is a strong and persistent cross-gender identification and a persistent discomfort with the sex or a sense of inappropriateness in the gender role of that sex”.

5.4 The Gender Identity Research and Education Society estimates that there are about 15,000 people in the UK receiving some form of medical intervention for Gender Dysphoria, which is about one in 4,000, of the whole population. Others have stated that the figure is 1 in 12,225 (Wilson et al., 1999).

5.5 During 2008/2009 in the East of England based on these figures expected to see between 458 and 1,375 people seeking help. This compares with about 350 people receiving tertiary psychological interventions with the main provider, West London Mental Health Trust (WLMHT) over one year, and a further 20 people waiting for surgical interventions for gender re-assignment surgery.

2 There are different care pathways for children under 12 and for adolescents between 12 and 18.

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5.6 This means that the figures for the east of England are below the lower end of these estimates. It is not known how many people are receiving private treatment.

5.7 There are two groups of individuals with Gender Dysphoria: - Trans women [biological males] and Trans men [biological females]. The policy identifies specific differences in the care of these two groups in the section on surgery.

5.8 Diagnosis is usually provided following referral and assessment of the patient by two Consultant Psychiatrists at the WLMHT Gender Identity Clinic (GIC). This takes place following an assessment of the patient usually by a locally based Consultant Psychiatrist.

5.9 In line with this commissioning policy, local PCTs are encouraged to source professional advice from a local Consultant Psychiatrist who has training and is experienced in Gender Dysphoria. This may be supplemented, possibly, by the opinion of a Consultant specialist within mental health or from another clinical discipline 3. The purpose, at this juncture, is to provide, on behalf of the PCT, a diagnosis of Gender Dysphoria whilst also eliminating any other feature(s) of mental disorder.

5.10 This assessment should be carried out prior to the local Consultant making any referral of the patient to WLMHT. In this way the level of inappropriate referrals will be reduced.

5.11 It is expected that Consultants engaged as local specialists will hold suitable post graduate specialist training in Gender Dysphoria as well as being registered with their respective accreditation bodies e.g. the GMC and the Royal College of Psychiatrists. Service Provision

5.12 The delivery of tertiary service treatment for Gender Dysphoria falls into two main categories, namely (a) psychological services, including the RLE and aftercare, and (b) any surgical procedures that may be recommended by the GIC and which require to be funded in accordance with this policy.

5.13 Psychological Services: The commissioned treatment pathway for psychological services the patients referred from east of England PCTs (see Appendix 4), is the WLMHT GIC.

5.14 It is generally recognised that two levels of intensity of service are provided, while maintaining the WPATH standards of care, (see Appendix 2), reflecting different levels of patient need for support.

5.15 The two levels of intensity are :-

Level one: for patients who are actively progressing through the treatment stages and who require regular psychotherapy and monitoring every one to three months.

Level two: for patients requiring ongoing input from GID specialist professionals on a six-

monthly to yearly basis.

3 That is to say, this area of service provision may, at any point in time, need to draw upon a broad range of experts. This can

begin with an expert GP, and mental health specialists. Later – beyond the initial secondary care process diagnosis, it may

benefit from expert opinion and advice from a specialist endocrinologist; a specialist in reproductive medicine; and general and

specialist surgical practitioners. Within mental health alone, there may be other practitioners employing skills and expertise in

this area e.g. a Psychotherapist; Clinical Psychologist and say, an expert Nurse Practitioner / counsellor

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5.16 Surgical services: Appendix 3 provides details of providers commissioned to deliver gender reassignment surgery for all patients from the east of England PCTs. Care Pathway and Approval Processes

5.17 There are two stages in the care and treatment pathway for east of England patients.

5.18 First, new patients entering the pathway must have been diagnosed as suffering from Gender Dysphoria. Thereafter, they must have commenced the two year RLE.

5.19 Secondly, for those patients who can show evidence of a successful completion of the two year RLE, the SCG will consider a referral for subsequent treatment e.g. surgical reassignment of gender.

5.20 Gender reassignment surgery will only be considered where a recommendation is made for such surgery by two Consultants based at the WLMHT GIC.

5.21 Diagrams of the Care Pathways are included as Appendix 4 (new patients) and Appendix 5

(surgical patients). 5.22 The following gives a brief description of the care and treatment pathway and approval

processes:- At the GP Surgery

5.23 The care pathway for individuals with gender identity disorder starts with a referral from a patient’s GP.

5.24 The NHS guidance to GPs states that when a service user, “presents for the first time for help with their gender discomfort, it is important that they are treated non-judgementally and sympathetically. Doctors who feel unable to do this should refer them to a colleague who can”. Initial Referral to a Consultant Psychiatrist

5.25 GP’s will need to consider whether there are any co-morbid conditions or whether, beyond the diagnosis of Gender Dysphoria, there are any other mental health factors that need to be assessed prior to referral onto the GID care pathway. Where the GP considers that a referral for GID treatment may be appropriate and a Consultant Specialist has been sourced by the PCT, the GP should make a referral to that Specialist for assessment, (see 5.8 and 5.9). Where a Consultant Specialist has not been sourced by the PCT, the GP will have to consider whether it is appropriate make a referral direct to the GIC. Where a GP makes a referral directly to the GIC, WLMHT GIC will notify the M&ESCG of the new referral - be this for assessment or treatment.

5.26 The role of the local Consultant Psychiatrist is to consider whether the patient has a diagnosis of

Gender Dysphoria and / or whether the patient also has any other form of mental disorder. An objective here is to assess whether the patient is an appropriate case to be referred to the commissioned tertiary level provider, (currently the WLMHT GIC) for further assessment and/or treatment.

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5.27 If necessary, the local Consultant Psychiatrist may make a referral to the GIC to provide or

confirm a diagnosis of Gender Dysphoria.

5.28 Where the local Consultant Psychiatrist refers directly to the GIC, the WLMHT GIC will notify the M&ESCG of the new referral, be this for assessment or treatment. SCG Notification

5.29 The Consultant Psychiatrist or GP will make the patient referral by sending a copy of their referral letter and clinical report directly to the clinicians at WLMHT. Following receipt of the referral from either the patient’s GP or Consultant Psychiatrist, the GIC will send a ‘Notification Fax’ to the M&ESCG. This will be provided for information purposes, and will exclude the

patient’s assessment or clinical history. Initial Assessment and Progression to the Real Life Experience

5.30 The initial assessment period of three to six months at the WLMHT GIC involves diagnostic assessment of the person by two Consultant Psychiatrists (including the patient’s history and current experience of Gender Dysphoria), counselling, general medical examination and psychological assessments and blood tests.

5.31 Initial assessments may also be commissioned using the same care and treatment pathway where a PCT wishes to establish a diagnosis. However where such an assessment is commissioned, funding approval for the assessment for this patient must still be in place prior to referral to the WLMHT GIC.

5.32 Once the initial assessment has been completed - and where it has been resolved that the person wishes to continue with a change of gender - they will progress to the RLE stage. Real Life Experience (RLE)

5.33 The RLE will be a minimum period of 24 months living continuously in the gender role with which the individual identifies. The aim is to assist the patient and the professionals in any subsequent decisions about how to proceed. There may be circumstances where it is clinically appropriate for the RLE to be extended. This will be a decision for the Consultant Psychiatrist and the reasons for this must be discussed with the individual.

5.34 The quality of the RLE shall be assessed through discussions about the patient’s ability to consolidate their gender role in areas such as employment, voluntary work, education or training, or some other stable social and domestic lifestyle; formally adopt a gender appropriate first name and demonstrate that society is aware that they are living in their new role. There may be occasions when clinicians request verifiable documentation or evidence of the gender change. Treatments provided by WLMHT

5.35 WLMHT GIC may, where clinically appropriate, provide psychosocial support and the services of a Consultant Endocrinologist to advise the patient’s GP concerning hormone treatment. Hormone treatment will generally start 3 months after commencement of the RLE.

5.36 The WLMHT GIC may also provide assessment and referral to M&ESCG commissioned providers for patients wishing to undergo gender reassignment surgery where the consultant

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considers such surgery to be clinically appropriate. Completion of the RLE and Possible referral for Gender Re-assignment Surgery

5.37 Some Trans people do not wish to progress to complete surgical reassignment and there should be some flexibility in the progression from one stage to another. Trans people will usually be on lifelong hormone therapy unless contraindicated.

5.38 If gender reassignment surgery is requested, then the patient must be assessed at WLMHT GIC by two gender specialist Consultants. Following this, the M&ESCG will be notified accordingly through a referral letter that must contain the signatures of the two WLMHT specialist Consultants indicating the RLE has been successfully completed and that the patient is considered by both consultants to be suitable for referral for assessment by gender reassignment surgical providers.

5.39 On receipt of this recommendation the M&ESCG (acting as the agent of the PCT) will, provided the M&ESCG are satisfied that surgery is clinically appropriate applying the tests set in paragraph 7.1 below and save in exceptional clinical circumstances, give authorisation for the referral for surgery with one of the commissioned providers as appropriate. (Commissioned providers are listed at Appendix 3).

5.40 The M&ESCG will also ensure that feedback as appropriate is given to the PCT by the GIC/surgical provider to enable the management of any after care and longer term input from local services. Follow-up

5.41 Following surgery the Trans person will usually be passed back to local acute and/or mental health services although some further intervention may be necessary from the WLMHT GIC.

6. GUIDANCE ON TREATMENT

Psycho-social support throughout pathway

6.1 This will, where clinically appropriate, be provided by a professional such as a mental health

social worker or nurse with counselling expertise, employed by the patient’s local PCT mental health trust to support transsexual people to cope with the stigma and prejudice faced while making the transition. This person will also assist with the practicalities of accessing local or tertiary services. The role is not delivery or assessment of the two year RLE. Hormone Therapy

6.2 Hormone therapy is an important component of treatment for properly selected individuals with gender dysphoria. A Guide to Hormone Therapy for Trans people, (Department of Health, December 2007) should be read in conjunction with this policy.

6.3 The administration of hormones induces development of secondary sexual characteristics of the desired gender, some of which is irreversible and has potential negative medical side effects.

6.4 Hormones are prescribed by the patient’s GP and administered only after all the necessary health checks are completed, informed consent is given and the person fulfils the following criteria :-

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Informed consent to receive treatment consistent with safe clinical practice. Appreciation of risks and potential risks with hormone therapy. Demonstrable knowledge of what hormones medically can and cannot do and their social

benefits and risks. Either a documented real-life experience of at least 3 months prior to administration of

hormones or a period of psychotherapy after the initial evaluation of generally no less than 3 months.

6.5 Contraindications to hormone therapy have been published and should be considered by the GP before initiating therapy, especially for persons who may be suffering from cardiovascular disease or predisposed to strokes, thromboembolism or cancer. Transsexual people should be discouraged by their GP and others providing care from purchasing hormones from unregulated sources such as the Internet.

6.6 Further guidance on hormone treatments is contained within the NHS Guidance for GPs, other clinicians and health professionals – see Appendix 1 for advice on access to the guidance.

6.7 It should be noted that the WLMHT GIC can provide advice regarding hormone treatment through the Consultant Endocrinologist however the GIC does not make provision for the prescribing of or administration of hormones which remains the responsibility of the patients GP.

Surgery 6.8 See Surgical Interventions currently approved in the next section.

Post operative care

6.9 Trans people are likely to have complex needs, be on life-long hormone therapy and may need to be monitored and have the services of a multidisciplinary team for the long term effects of such treatment such as thromboembolism, osteoporosis and cancer.

6.10 Reassignment surgery usually leads to lower doses of hormones being required. GPs will be advised on hormone therapy by the WLMHT GIC for patients within the care and treatment pathway, with referral of problems to the local trust endocrinology services as required.

6.11 Minor GU tract problems can be referred to the local urology department, but more complex problems should be referred to the specialist centre where reassignment surgery took place.

6.12 Referrals for any form of repair or revision surgery that needs to be carried out by a specialist commissioned provider should be made via the M&ESCG. This includes patients for whom original surgery was not carried out via the east of England treatment pathway and for whom funding approval will need to be gained.

6.13 However these issues will be part of normal treatment or care pathways managed by local PCT’s. 7. COMMISSIONING AND FUNDING ISSUES

Surgical Interventions currently approved

7.1 Access to gender reassignment surgery will be authorised only where the M&E SCG are satisfied that such surgery is clinically appropriate and where all of the following criteria are met: a) the patient fulfils the WPATH standards and eligibility criteria

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b) the requirements of this commissioning policy are met c) the patient has been recommended for surgery by two gender specialist Consultants at the designated tertiary gender dysphoria service, (currently the West London Mental Health Trust GIC) d) the patient is still registered with a GP in EoE SCG area d) the SCG or PCT has agreed the original funding Once the elements above are confirmed, surgical interventions will be authorised where clinically appropriate as indicated in the tables below:-

Female to male (F t M) :-

SCG Commissioned and funded approved services PCT commissioned and funded approved services *

Salpingectomy Bilateral mastectomy or reduction mammoplasty

(usually carried out through local PCT)

Vaginectomy Hysterectomy

(usually carried out through local PCT)

Oophorectomy

Phalloplasty

Urethroplasty

Implantation of penile prosthesis

Scrotoplasty with testicular prostheses

hair removal only from areas directly involved in reconstructive genital surgery

Male to female (M t F) :-

SCG Commissioned and funded approved services PCT commissioned and funded approved services *

Clitoroplasty

Labiaplasty

Orchidectomy

Penectomy

Vaginoplasty

hair removal only from areas directly involved in reconstructive genital surgery

* These procedures are not required to be carried out by a specialist gender surgical service and therefore should be provided locally through referral pathways within local PCT arrangements.

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7.2 M&ESCG and each PCT recognise that there can be other medical procedures which could be applied in any individual case as part of the process of transforming a person’s body and the patient’s appearance to be more congruent with their new gender, and which will make that person feel more comfortable and accepted in their new sexual identity. M&ESCG and each PCT also recognise that patients undergoing surgical transformation can suffer psychological distress if their appearance does not accord with a body size or shape in their new identity which is considered to be acceptable to that individual. However M&ESCG and each PCT recognise and accept that:

a) There is limited budget which each PCT can apply to GID services (as with all other services)

such that it is not possible, within that budget, for the PCT to fund every requested surgical transformational service for every GID patient. M&ESCG and each PCT therefore has to draw a line between funded services and non-funded services for GID patients in order to stay within financial balance; and

b) The nature of these other services is essentially cosmetic in nature, albeit delivered within the GID care pathway The PCT needs to comply with its equality duties to individuals who are seeking the same or similar services outside the GID pathway, and such individuals should not (without good reason) be either in a better or worse position than GID patients.

The PCTs have a policy of not funding cosmetic surgery unless under exceptional circumstances, even if there are said to be substantial psychiatric or psychological benefits for the patient from undergoing such surgery. Thus, save for the procedures listed above, PCTs will not fund additional surgical interventions as part of the GID care pathway. This does not prevent a GID patient from seeking funding for a surgical intervention by making an application for individual funding outside the GID policy.

7.3 It follows that requests for any of the procedures which are not part of SCG commissioned services (as listed in the table below) will only be funded in exceptional circumstances through local PCT individual funding approval processes.

Surgical procedures that will not be routinely approved are:-

Services that will not be routinely approved

chondroplasty (larynx reshaping)

crico-thyroid approximation surgery (to raise vocal pitch)

Rhinoplasty

jaw reduction

waist liposuction

surgical reversal of gender reassignment surgery

surgical revisions for psychological reasons

surgical revisions for cosmetic reasons

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repair or revision to surgery that has taken place outside of the NHS

augmentation mammoplasty

Hair removal (in areas other than from donor sites to be used in surgery) where hormones do not work

Voice modification surgery

7.4 Any and all other treatments related to gender reassignment whether deemed cosmetic or not will

only be funded in exceptional cases through local PCT individual funding approval processes and as such, referrals should be made through local PCTs although the M&ESCG will offer guidance to the PCTs, as necessary.

Revisions / Repair

7.5 Surgical revisions of gender reassignment surgery within the NHS and if clinically indicated will be carried out at one of the commissioned specialist surgical services or at local services, depending on the level of specialist expertise required.

7.6 GP’s wanting to refer a patient for revision should refer to the local PCT in the first instance for minor procedures, with referral to the original centre for complicated cases or as appropriate for any emergency or emergency situations.

7.7 For all referrals to specialist gender services, the M&ESCG must be informed by the referring clinician or GP, particularly where there may be funding implications with repair or revision.

7.8 In every case where the original surgery was not carried out within this treatment pathway, the M&ESCG must be contacted as soon as is reasonably practicable - and prior to any approval for treatment at a commissioned specialist gender service - save that required in an emergency.

7.9 Requests for non surgical procedures for exceptional circumstances may be reviewed on a named individual basis through the responsible PCT exceptional cases panel. The M&ESCG should only be informed where treatment may be required from specialist commissioned providers.

7.10 Gender reassignment therapy and / or surgery are provided following rigorous assessment of individual eligibility and readiness using this treatment pathway and the commissioned specialist services. It is part of the assessment process that the patient understands and accepts that this is an irreversible change to reflect an inherent and not selected gender. It follows that reversal of gender reassignment surgery will not be funded by the PCTs or authorised by the M&ESCG.

7.11 Revisions or repairs to surgery undertaken outside the NHS, wherever it has occurred, will not be funded by PCTs or the M&ESCG.

Private Treatment

7.12 Patients opting for private treatment at any stage of the care pathway will be managed according to the responsible PCTs policy on private/NHS treatment and procedures management. Patients will be considered on a case by case merit in line with NHS patients on the same care and treatment pathway.

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8. OUTCOME STUDIES 8.1 There are a number of outcome studies in this area, some of which provide a mixed picture. The

positive results are in the NHS Guidance to GP’s etc. Two studies are quoted, both at the post-surgery end-point:

Landen et al (1998) – which showed that there was a 3.4% regret rate – this was more likely if

there was a lack of family support

Smith et al (2005) which demonstrated no regrets, 91.6% being satisfied with remaining, and 8.4% being neutral

9. COST OF TREATMENTS 9.1 Some concern has been expressed as part of the feedback about the cost of treating people with

gender dysphoria and its relative priority compared with other treatments that require to be funded.

9.2 The cost for each PCT is available on request but the following is an indication of the cost of providing treatment based on 2008/09 prices and activity.

West London Mental Health Trust for psychological assessment, support and initial hormone

treatment – the cost for all PCTs in the East of England is about £142,000 per annum – an average cost of about £10,000 per PCT. The range is from £1,500 to about £40,000.

Imperial Health Trust – M t F surgery – about £152,000 for 16 patients at £9,743 per patient. St Peters Andrology – F t M surgery - about £350,000 to £400,000 for 5 patients at about

£70,000 to £80,000 per patient. 9.3 The total cost 2008/2009 for the east of England was about £700,000 per annum. The limitations

on available tertiary treatment as set out in this policy are considered by the M&ESCG to be essential in order to keep the annual cost of treatment for east of England GID patients within this overall sum.

9.4 There is no estimate available of the cost of on-going hormone and / or other treatments that PCTs are committed to, following the end of tertiary treatments.

10. COMPLAINTS

10.1 Patients with complaints about how tertiary services are commissioned should be addressed to

the Midlands and East Specialised Commissioning Group (East of England Office).

10.2 Patients or carers wishing to make complaints about local arrangements need to do so via their local PCT. Specific complaints about the delivery of services should be addressed to the provider concerned.

11. REVIEW 11.1 The M&ESCG will review this policy bi-annually or sooner in light of new evidence or guidelines

produced by the Royal College of Psychiatrists, Department of Health (DH), NICE or any other relevant body.

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11.2 The next date for review will be September 2012

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Appendix 1 References 1. International Statistical Classification of Diseases and Related Health Problems. Tenth Revision,

Volume 3. World Health Organisation, 1994 2. Standards of Care for Gender Identity Disorders. 6th Version. The Harry Benjamin International

Gender Dysphoria Association, 2001 3. A guide to hormone therapy for Trans people. Department of Health, December

2007 4. Good Practice in supporting Transgender People. Social Care Policy and Practice, 2007 5. NHS Direct Health Encyclopaedia 6. Guidance for GPs, other clinician and health professionals on the care gender variant people,

Department of Health, 2008 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/D

H_084919 7. Guidelines for Health Organisations on Commissioning Treatment Services for Trans People, –

Parliamentary Forum on Transsexualism, 2005 – available from www.gires.org.uk/web-page_Assets/frontframeset.htm

8. Prevalence of Gender Dysphoria in Scotland: A Primary Case Study. British Journal of General

Practice (December), 991-2, as quoted in the Report of the Parliamentary Forum on Transsexualism on Guidelines for Commissioning Services for Trans People, Wilson P, Sharp C, & Carr S, 1999. The figures for the UK were extrapolated from Scottish Figures.

9. The Gender Recognition Act, 2004

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Appendix 2 WPATH Standards of Care (The World Professional Association for Transgender Health's Standards of Care for Gender Identity Disorders). The Purpose of the Standards of Care The major purpose of the Standards of Care (SOC) is to articulate this international organisation's professional consensus about the psychiatric, psychological, medical, and surgical management of gender identity disorders. Professionals may use this document to understand the parameters within which they may offer assistance to those with these conditions. Persons with gender identity disorders, their families, and social institutions may use the SOC to understand the current thinking of professionals. All readers should be aware of the limitations of knowledge in this area and of the hope that some of the clinical uncertainties will be resolved in the future through scientific investigation. The Overarching Treatment Goal The general goal of psychotherapeutic, endocrine, or surgical therapy for persons with gender identity disorders is lasting personal comfort with the gendered self in order to maximize overall psychological well-being and self-fulfilment. The Standards of Care Are Clinical Guidelines The SOC are intended to provide flexible directions for the treatment of persons with gender identity disorders. When eligibility requirements are stated they are meant to be minimum requirements. Individual professionals and organized programs may modify them. Clinical departures from these guidelines may come about because of a patient's unique anatomic, social, or psychological situation, an experienced professional’s evolving method of handling a common situation, or a research protocol. These departures should be recognized as such, explained to the patient, and documented both for legal protection and so that the short and long term results can be retrieved to help the field to evolve. The Clinical Threshold A clinical threshold is passed when concerns, uncertainties, and questions about gender identity persist during a person’s development, become so intense as to seem to be the most important aspect of a person's life, or prevent the establishment of a relatively unconflicted gender identity. The person's struggles are then variously informally referred to as a gender identity problem, gender dysphoria, a gender problem, a gender concern, gender distress, gender conflict, or transsexualism. Such struggles are known to occur from the preschool years to old age and have many alternate forms. These reflect various degrees of personal dissatisfaction with sexual identity, sex and gender demarcating body characteristics, gender roles, gender identity, and the perceptions of others. When dissatisfied individuals meet specified criteria in one of two official nomenclatures--the International Classification of Diseases-10 (ICD-10) or the Diagnostic and Statistical Manual of Mental Disorders--Fourth Edition (DSM-IV)--they are formally designated as suffering from a gender identity disorder (GID). Some persons with GID exceed another threshold--they persistently possess a wish for surgical transformation of their bodies. Two Primary Populations with GID Exist -- Biological Males and Biological Females The sex of a patient always is a significant factor in the management of GID. Clinicians need to separately consider the biologic, social, psychological, and economic dilemmas of each sex. All patients, however, should follow the SOC.

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Appendix 3 Gender Identity Service – Commissioned Service Providers 1. West London Mental Health Trust Gender Identity Clinic – for psychological interventions,

endocrinology advice and management and support of patients undergoing the RLE

2. Imperial College Healthcare NHS Trust – Surgery (male to female)

3. St Peters Andrology Centre – Surgery (female to male)

4. Tavistock and Portman NHS Trust (young people under 18) – for psychological interventions (referrals to this Trust will be a matter for local CAMHS Commissioners)

5. University College London Hospital – Surgery (female to male) (list currently closed)

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Appendix 4 New Patients Care Pathway – Entry to the RLE

Patient visits

General Practitioner

Consultant informs patient and patient’s GP

Referral allocated to WLMHT Gender

Consultant Psychiatrist

Appointment Offered

1st Assessment

with Consultant Inappropriate referral –discharged to GP, local Consultant Psychiatrist

2nd

Assessment with Consultant

Follow-up appointments

every 3-4 months

Group Session every 2

nd Monday if required or appropriate

RLE may have commenced prior to assessments with

WLMHT team

Gender Reassignment Surgery

Follow-up appointments before referral back to GP/CMHT

Referral for surgery indicated

2 x WLMHT Consultant’s signatures required on

referral letter to SCG and surgical Provider

GP refers to local Consultant Psychiatrist

Local Consultant Psychiatrist refers to GIC

Funding approved for whole treatment pathway including

surgery where indicated

Local Cons Psychiatrist / Cons Specialist diagnoses GD whilst eliminating any

other mental disorder

GIC provides a ‘Notification Fax’ to SCG

Successful completion of the two year RLE

Surgical provider completes IPA and

gains SCG authorisation

Notes

1. 1st and 2

nd assessments must be carried out by two different WLMHT GIC Consultants.

2. No treatment will commence without WLMHT notifying the M&ESCG of the referral.

3. No surgical treatment will commence until the M&ESCG has given approval and authorises a commissioned provider to commence

treatment using the IPA process.

4. Referrals to surgical providers will only be accepted from the WLMHT. Where patients may have accessed private or other forms of treatment outside of the above process, then assessment by and referral from the WLMHT will be required for surgery which will only be authorised by the M&ESCG if funding has been agreed by the responsible PCT. There will be no fast track of any such patient who will be referred in strict rotation and turn with all other patients referred to the WLMHT GIC.

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Appendix 5 Gender Dysphoria – Care Pathway – Direct referral for gender reassignment surgery (not repair)

Patient visits General Practitioner

Consultant informs patient and patient’s GP

Referral allocated to Gender Consultant

Psychiatrist

Appointment Offered

1st Assessment

with Consultant Inappropriate referral –discharged to GP, local Consultant Psychiatrist

2nd

Assessment with Consultant

Gender Reassignment Surgery

Follow-up appointments before referral back to GP/CMHT

Referral for Surgery indicated

2 x WLMHT Consultant’s signatures required on

referral letter to SCG and proposed surgical Provider

GP refers to local Consultant Psychiatrist

Local Consultantt Psychiatrist refers to

surgical provider

M&ESCG informs referring Consultant of funding

approval in writing

Funding not approved Consultant informs patient and patients GP

Local Consultant Psychiatrist assesses

Surgical provider seeks approval from the M&ESCG

to proceed

Successful completion of the two year real life experience evidenced

with appropriateness for surgery indicated *

Surgical provider completes IPA and

gains SCG authorisation

Notes

1. 1st and 2

nd assessments must be carried out by two different WLMHT GIC Consultants who will assess successful completion of

the two year RLE. * The two year RLE will not be expected to be repeated unless this is indicated following assessment by the WLMHT GIC. Where this is indicated, patients will be referred back to the local PCT Consultant who will need to apply for funding approval for all or part of the two year RLE treatment pathway prior to surgery.

2. No treatment will commence without firstly gaining funding approval for the treatment pathway indicated.

3. No treatment will commence until the M&ESCG has given funding approval and authorises a commissioned provider to commence treatment using the IPA process.

4. Referrals to surgical providers will only be accepted from the WLMHT. There will be no fast track of any patient who will be referred in strict rotation and turn with all other patients referred to the WLMHT GIC.

5. Surgery will only be provided by commissioned providers. There is no scope to access other providers outside of the east of England care and treatment pathway for gender dysphoria.

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Appendix 6 East of England PCTs to which this policy applies

This Policy applies to people registered with a General Practitioner in one of the following Primary Care Trusts:-

1. NHS Bedfordshire

2. NHS Luton

3. NHS Cambridgeshire

4. NHS Peterborough

5. NHS Hertfordshire

6. NHS Norfolk

7. NHS Great Yarmouth and Waveney

8. NHS West Essex

9. NHS Mid Essex

10. NHS North East Essex

11. NHS South East Essex

12. NHS South West Essex

13. NHS Suffolk

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Appendix7 Notification Fax

URGENT FAX – PRIVATE AND CONFIDENTIAL

NOTIFICATION OF APPROVAL TO TREAT- MIDLANDS AND EAST SCG (EAST OF ENGLAND OFFICE)

GENDER IDENTITY CLINIC

NOTIFICATION OF APPROVAL TO TREAT

This is to confirm that Name: DOB: NHS No: GP (Name & Address) Dr Referring Consultant Psychiatrist: Dr Has been referred to the Gender Identity Clinic on the <date i.e 4

th> day of <month> 2012.

The referral has been clinically screened and deemed appropriate for our service. As the responsibility for meeting the costs of this patient’s care rests with your organisation, I am sending you this information for notification purposes only. (Note: Each patient will receive both a first and second assessment before being accepted for treatment. Please refer to the Care Pathway document attached for full details.) As per our agreements a report will be sent to you by the 4

th of the month collating referrals received in

the previous month.

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Appendix8

Individual Patient Agreement (Gender Pathway – Surgical Treatment)

1. Proposed Provider’s Details

Name of Proposed Provider Organisation

Telephone No.

Safe Haven Fax No.

Provider Code Proposed Initial Assessment Date

2. Patient’s Details

Name Gender

Date of Birth Ethnicity

NHS No. Responsible PCT

Home Address & Postcode Registered GP’s Full Name

Registered GP’s Practice Code

Registered GP’s Full Correspondence Address & Telephone No

Telephone No.

3. Patient Referral and Funding Status

Referral Origination NHS GP

NHS Community Psychiatrist

Other (Please state)

Has funding already been agreed with the SCG?

YES NO

If funding has been agreed, please ensure that a copy of the funding confirmation from the SCG accompanies this IPA.

Only if funding has not already been agreed please complete Section 4 below

4. Funding (Please complete only if referral is from Community Psychiatry or other service and funding has not been

agreed)

Referring Clinicians Full Name

Referring Clinicians full postal address including postcode

Referring Clinicians telephone contact number

For internal use only

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4. Authorisation Details- (Responsible Commissioner)

I confirm that I the undersigned have the delegated authority to authorise the episode of treatment (as stipulated at Section 3 of this IPA) on behalf of the above Purchasing Organisation.

Name Designation

Telephone No. Fax No.

Date Authorisation Reference

Signature

On behalf of the Midlands and East Specialised Commissioning Group

5. Authorisation Details – (Proposed Provider)

I confirm that I the undersigned have the delegated authority to authorise this episode of treatment (as stipulated at Section 3 of this IPA) on behalf of the proposed Provider Organisation (as detailed at Section 1 of this IPA). On behalf of the proposed Provider Organisation I accept the patient.

Name Designation

Telephone No. Fax No.

Date

Signature

On behalf of the West London Mental Health Trust

6. Invoicing Details

An invoice will be sent on a monthly basis, starting at the end of the first month, to the following address:

Contact Name: Designation

Address

Telephone No.

Fax No.

7. Change in Circumstances

Einstein – entry / update (Initials and date)

Authorisation Faxed to Provider (Initials and Date)

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Any change in treatment and fee will require a new Individual Patient Agreement (IPA) to be completed, signed and sent to the Midlands and East Specialised Commissioning Group prior to the commencement

of any change in treatment option.

8. PLEASE COMPLETE, SIGN AND FAX THIS IPA TO 01279 210740 PRIOR TO COMMENCEMENT OF TREATMENT

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Appendix 9

Status of Policy

22 November 2007

The SCG Board agreed that from April 2008, the SCG would commission both psychological and surgical aspects of the gender dysphoria pathway

14 January 2008

First draft policy out for consultation

February 2008 to April 2008 Comments received by SCG.

May 2008

Policy considered by Directors of Commissioning and MH/Acute Commissioners

June 2008 Further comments received and policy updated. Comments responded to.

July 2008

Final version (v6) of the policy published

November 2009 Policy Reviewed and Updated (v7)

4 February 2010

Review of revisions of November 2009 by Public Health Clinical Action Group Revision of approved / non approved procedures into tabular layout

15 April 2010 Policy accepted by the East of England Clinical Advisory Group including the updates / revision

and clarification of wording (v8)

7 September 2010 Policy updated, in line with host PCT legal advice.

13 September 2010 Draft Updated Policy presented to SCG Board for formal approval, following circulation for

comments to PCTs. Approved.

1 August 2011 Policy reviewed no major changes made due to national policy convergence.

26 January 2012 Policy amended to reflect funding approval by the SCG rather than the PCTs

10 April 2012 Policy amended to include the change in SCG name from East of England SCG to Midlands and

East SCG; to update the SCG notification; and to include the ‘Notification Fax’ as an appendix.