Gender+Dysphoria+Commissioning+Policy 2011
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Transcript of Gender+Dysphoria+Commissioning+Policy 2011
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East of England Specialised Commissioning Group
UPDATED POLICY
FOR THE COMMISSIONING AND TREATMENT OF PEOPLEWITH GENDER DYSPHORIA
OriginalAuthor(s) /
Owner(s)
Updated by
Mike OKeeffe & Carole Theobald,EoE SCG
Graham Shelton and KarenLockett
Version No. Final Version V10
Approval Date 13 September 2010
Latest Review August 2010
Updated August 2010
Next ReviewDate
January 2011
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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 Gender Dysphoria Individual Patient Agreement 23
Appendix 8 Status of Policy 25
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GLOSSARY OF TERMS AND ABBREVIATIONS
EoE SCG East of England 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 Carefor 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 ofservices and treatment options for patients who have Gender Dysphoria or Gender IdentityDisorder.
1.2 It is important to note that whilst this version of the policy points towards a consistent andequitable approach to accessing services across the East of England, the initial approval will beat a local PCT level.
1.3 This policy describes the provision of assessment and treatment of patients registered withGeneral Practitioners in the East of England PCTs who present with gender dysphoria. Itdescribes the criteria for referral to Gender Identity Disorder (GID) services and how funding willbe agreed both at a local level and cases are authorised by the East of England SpecialisedCommissioning Group (EoE SCG).
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 resultof this policy to provide services to every patient who seeks GID services or to meeting everyrequest 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 beno further funding approvals requested from local PCTs. This includes that part of the pathwaybetween the completion of the Real Life experience and a referral for surgery.
1.6 The only occasion where such liaison will take place is where a request has been made toapprove a surgical procedure which is not on the formal approval list or where a patient accessesthe treatment pathway seeking a referral for surgery. The SCG will keep local PCTs informed ofprogress as appropriate.
1.7 This policy addresses commissioning of gender dysphoria services for adults i.e. patients overthe age of 18 years. It does not cover commissioning of gender dysphoria services for childrenand adolescents (see the section on young people below). These conditions are different fromthose seen in adults due to the physical, psychological and sexual developmental process andthe greater variability in outcome.
2. LEGAL OBLIGATIONS AND COMMISSIONING PRIORITY
2.1 As local PCTs will be providing the initial funding approval into the care pathway it is important
that in developing their criteria, PCTs take into account the legal position in relation to thiscondition. This policy is underpinned by a recognition that Gender Dysphoria is a bone fidemedical condition where, subject to the conditions stated in this policy, NHS funded treatmentshould be offered to GID patients. The priority granted to funding services for this patient grouphas been developed in accordance with the PCTs prioritisation process. However each PCTreserves the right to review this policy at any time. Patients are entitled to seek treatment or thecontinuation 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 themanagement of Gender Dysphoria. This policy will be amended in the light of any futureguidance.
2.3 The recent NHS Guidance for GPs, other clinicians and health professionals on the care ofgender variant people (Department of Health, May 2008) states, People are entitled to treatmentfor transsexualism by law as stated in the case ofNorth West Lancashire Health Authorityv A, D
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& G, Court of Appeal, 1999 (see the forthcoming NHS publicationA guide to trans service usersrights). 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_084
919
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 thatequality policies include transgender people and address issues such as transphobia fromstaff 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 personprefers
Trans People may have specific personal care needs, which need to be handled sensitivelye.g. Use of toilets and bathing
Confidentiality issues around someones 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 thephysical body
4. YOUNG PEOPLE
4.1 Gender dysphoria usually starts in early childhood, although issues may also start developinglater in life. There are likely to be different service options depending on whether the person isunder 18 or over. The service issues and care pathway for adults (over 18) is set out in the restof this policy.
4.2 Young people under 18 should be referred to a child and adolescent Psychiatrist in the firstinstance. The only option available to a local CAMHS consultant is to refer the young person tothe 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. Untilthis is confirmed PCTs should continue to consider, and where appropriate, approve funding forspecified treatment on an individual case basis. This would be in accordance with their localcommissioning 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
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919 -
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4.4 The SCG does not have a contract or service agreement with this Trust and other providers ofservices are not considered to be part of the under 18s treatment or care pathway .
4.5 Different treatments may start at various ages and stages 2. Normally, hormone treatment will notbe 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 untilthe 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 afterthe patients 18th birthday.
5. SERVICE ISSUES AND CARE PATHWAY
Definition
5.1 Gender Dysphoria, according to the WHOICD 10, Appendix 1 is a condition where the patient
experiences a desire to live and be accepted as a member of the opposite sex, usuallyaccompanied by a sense of discomfort with, or inappropriateness of, ones anatomic sex and awish to have hormonal treatment and/or surgery to make ones body as congruent as possiblewith the preferred sex. Classed as a psychiatric condition, the exact cause of Gender Dysphoriais 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 accompaniedby the wish to make his or her body as congruent as possible with the preferred sex throughsurgery and hormone treatmentThe transsexual identity has been present persistently for at least two yearsThe 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 thereis a strong and persistent cross-gender identification and a persistent discomfort with the sex or asense of inappropriateness in the gender role of that sex.
5.4 The Gender Identity Research and Education Society estimates that there are about 15,000people 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 458and 1,375 people seeking help. This compares with about 350 people receiving tertiarypsychological 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-assignmentsurgery.
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.
2There are different care pathways for children under 12 and for adolescents between 12 and 18.
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5.7 There are two groups of individuals with Gender Dysphoria:- Trans women [biological males] andTrans men [biological females]. The policy identifies specific differences in the care of these twogroups 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 anassessment 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 advicefrom 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 mentalhealth or from another clinical discipline 3. The purpose, at this juncture, is to provide, on behalfof the PCT, a diagnosis of Gender Dysphoria whilst also eliminating any other feature(s) ofmental disorder.
5.10 This assessment should be carried out prior to the local Consultant making any referral of thepatient to the commissioned tertiary level provider. In this way the level of inappropriate
referrals to the WLMHT GIC will be reduced.
5.11 It is expected that Consultants engaged as local specialists will hold suitable post graduatespecialist training in Gender Dysphoria as well as being registered with their respectiveaccreditation 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 surgicalprocedures that may be recommended by the GIS and which require to be funded in accordancewith this policy.
5.13 Psychological Services: The commissioned treatment pathway for psychological services thepatients referred from East of England PCTs (see Appendix 4), is the West London Mental HealthTrust Gender Identity Clinic.
5.14 It is generally recognised that two levels of intensity of service are provided, while maintaining theWPATH standards of care, (see Appendix 2), reflecting different levels of patient need forsupport.
5.15 The two levels of intensity are :-
Level one: for patients who are actively progressing through the treatment stages and whorequire regular psychotherapy and monitoring every one to three months.
Level two: for patients requiring ongoing input from Gender Identity Dysphoria (GID)
specialist professionals on a six-monthly to yearly basis.
5.16 Surgical services:Appendix 3 provides details of providers commissioned to deliver genderreassignment surgery for all patients from the East of England PCTs.
3That 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 maybenefit 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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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 real life experience.
5.19 Secondly, for those patients who can show evidence of a successful completion of the two yearreal life experience, PCTs will consider a referral for subsequent treatment e.g. surgicalreassignment of gender.
5.20 Gender reassignment surgery will only be considered where a recommendation is made for suchsurgery by two Consultants based at the West London Mental Health Trust Gender IdentityClinic.
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 approvalprocesses.
At the GP Surgery
5.23 The care pathway for individuals with gender identity disorder starts with a referral from apatients GP.
5.24 The NHS guidance to GPs states that when a service user, presents for the first time for helpwith their gender discomfort, it is important that they are treated non-judgementally andsympathetically. Doctors who feel unable to do this should refer them to a colleague who can.
Initial Referral to a Consultant Psychiatrist
5.25 GPs will need to consider whether there are any co-morbid conditions or whether, beyond thediagnosis of Gender Dysphoria, there are any other mental health factors that need to beassessed prior to referral onto the GID care pathway.
Where the GP considers that a referral for GID treatment may be appropriate and a ConsultantSpecialist has been sourced by the PCT, the GP should make a referral to that Specialist forassessment, (see 5.8 and 5.9).
Where a Consultant Specialist has not been sourced by the PCT the GP will have to considerwhether it is appropriate make a referral direct to the GIC.
Where a GP considers that a referral to the GIC is appropriate, that GP must also make anapplication on behalf of the patient to the local PCT to gain funding approval for treatment for theindividual case, prior to the patients referral to the WLMHT Gender Identity Clinic - be this forfurther assessment or treatment.
5.26 The role of the local Consultant Psychiatrist is to consider whether the patient has a diagnosis ofGender Dysphoria and / or whether the patient also has any other form of mental disorder. Anobjective here is to assess whether the patient is an appropriate case to be referred to thecommissioned 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 orconfirm a diagnosis of Gender Dysphoria.
5.28 Where the local Consultant Psychiatrist considers that a referral to the GIC is appropriate, s/hemust also make an application on behalf of the patient to the local PCT to gain funding approval
for treatment for the individual case prior to the patients referral to the WLMHT Gender IdentityClinic be this for further assessment or treatment.
Local PCT Approval
5.29 The local Consultant Psychiatrists role in the pathway is to advise the PCT whether a referral fortreatment at the Gender Identity Clinic at West London Mental Health NHS Trust (WLMHT) isclinically appropriate. Prior to referral for treatment at the WLMHT the local PCT must givefunding approval for the patient.
5.30 Where a recommendation is made to the PCT by the local Consultant Psychiatrist that a patientshould be referred to the GIS for further assessment, the PCT shall, save in exceptional clinical
circumstances, approve funding for that patient provided the PCT is satisfied that the referral isclinically appropriate.
5.31 Local PCT funding approval means an agreement to fund such part of the treatment to beclinically appropriate and requires to be funded in accordance with this policy.
5.32 The EoE SCG should be informed of the local systems in place to ensure that funding approvalsare received appropriately by the EoE SCG. Community services such as GPs and CMHTsshould also be informed of the PCTs local arrangements to ensure that patient referrals are notdelayed or misdirected.
In the event that funding approval is given, the PCT will ask the local Consultant Psychiatrist to proceedwith the referral to WLMHT Gender Identity Clinic
5.33 The Consultant Psychiatrist will make the patient referral as follows :-
Complete a copy of the Individual Patient Agreement proforma (IPPA) (see Appendix 7)Send the IPPA and a copy of the funding approval letter and a copy of the referral letter to theWLMHT Gender Identity ClinicSend a copy of the IPPA, together with a copy of the funding approval letter from the PCT tothe East of England Specialised Commissioning Group (EoE SCG).
All of the above documents must be completed and sent as indicated. Not doing so mayresult in delays for the patient.
SCG and WLMHT Actions
5.34 On receipt of the referral the WLMHT Gender Identity Clinic are required to seek formalauthorisation from the EoE SCG to proceed with the assessment.
5.35 At this juncture the SCG will :-
Authorise the referral automatically, provided that the local PCT has already given fundingapproval and a copy of the letter indicating this has been provided to the SCG as indicated in
5.32 above.
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Where funding approval from the relevant local PCT has not been given, the EoE SCG willrefer any authorisation request back to the local PCT (via the referring, local ConsultantPsychiatrist) and the WLMHT will be informed not to proceed further.
Initial Assessment and Progression to the Real Life Test
5.36 The initial assessment period of three to six months at the WLMHT GIC involves diagnosticassessment of the person by two Consultant Psychiatrists (including the patients history of andcurrent experience of Gender Dysphoria), counselling, general medical examination andpsychological assessments and blood tests.
5.37 Initial assessments may also be commissioned using the same care and treatment pathwaywhere a PCT wishes to establish a diagnosis. However where such an assessment iscommissioned, funding approval for the assessment for this patient must still be in place prior toreferral to the WLMHT GIC.
5.38 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 real-life experience(RLE) stage.
Real Life Experience (RLE)
5.39 The RLE will be a minimum period of 24 months living continuously in the gender role with whichthe individual identifies. The aim is to assist the patient and the professionals in any subsequentdecisions about how to proceed. There may be circumstances where it is clinically appropriatefor the RLE to be extended. This will be a decision for the Consultant Psychiatrists and thereasons for this must be discussed with the individual.
5.40 The quality of the RLE shall be assessed through discussions about the patients ability toconsolidate 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 nameand demonstrate that society is aware that they are living in their new role. There may beoccasions when clinicians request verifiable documentation or evidence of the gender change.
Treatments provided by WLMHT
5.41 WLMHT GIC may, where clinically appropriate, provide psychosocial support and the services ofa Consultant Endocrinologist to advise the patient s GP concerning hormone treatment.Hormone treatment will generally start 3 months after commencement of the real life experience.
5.42 The WLMHT GIC may also provide assessment and referral to EoE SCG commissionedproviders for patients wishing to undergo gender reassignment surgery where the consultantconsiders such surgery to be clinically appropriate.
Completion of the RLE and Possible referral for Gender Re-assignment Surgery
5.43 Some Trans people do not wish to progress to complete surgical reassignment and there shouldbe some flexibility in the progression from one stage to another. Trans people will usually be onlifelong hormone therapy unless contraindicated.
5.44 If gender reassignment surgery is requested, then the patient must be assessed at WLMHT GICby two gender specialist Consultants. Following this, the EoE SCG will be notified accordingly
through a referral letter that must contain the signatures of the two WLMHT specialist Consultantsindicating the real life experience has been successfully completed and that the patient isconsidered by both consultants to be suitable for referral for assessment by gender reassignment
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surgical providers.
5.45 On receipt of this recommendation the EoE SCG (acting as the agent of the PCT) will, providedthe EoE SCG are satisfied that surgery is clinically appropriate applying the tests set inparagraph 7.1 below and save in exceptional clinical circumstances, give authorisation for the
referral for surgery with one of the commissioned providers as appropriate. (Commissionedproviders are listed at Appendix 3).
5.46 The EoE SCG will also ensure that feedback as appropriate is given to the PCT by theGIC/surgical provider to enable the management of any after care and longer term input fromlocal services.
Follow-up
5.47 Following surgery the Trans person will usually be passed back to local acute and/or mentalhealth 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 healthsocial worker or nurse with counselling expertise, employed by the patients local PCT mentalhealth trust to support transsexual people to cope with the stigma and prejudice faced whilemaking the transition. This person will also assist with the practicalities of accessing local ortertiary 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 withgender 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 thedesired gender, some of which is irreversible and has potential negative medical side effects.
6.4 Hormones are prescribed by the patients GP and administered only after all the necessaryhealth checks are completed, informed consent is given and the person fulfils the followingcriteria :-
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 socialbenefits and risks.Either a documented real-life experience of at least 3 months prior to administration ofhormones or a period of psychotherapy after the initial evaluation of generally no less than 3months.
6.5 Contraindications to hormone therapy have been published and should be considered by the GPbefore initiating therapy, especially for persons who may be suffering from cardiovascular diseaseor predisposed to strokes, thromboembolism or cancer. Transsexual people should be
discouraged by their GP and others providing care from purchasing hormones from unregulatedsources such as the Internet.
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6.6 Further guidance on hormone treatments is contained within the NHS Guidance for GPs, otherclinicians 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 throughthe 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 tobe monitored and have the services of a multidisciplinary team for the long term effects of suchtreatment such as thromboembolism, osteoporosis and cancer.
6.10 Reassignment surgery usually leads to lower doses of hormones being required. GPs will beadvised on hormone therapy by the WLMHT GIC for patients within the care and treatmentpathway, 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 complexproblems 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 specialistcommissioned provider should be made via the EoE SCG. This includes patients for whomoriginal surgery was not carried out via the East of England treatment pathway and for whomfunding approval will need to be gained.
6.13 However these issues will be part of normal treatment or care pathways managed by local PCs.
7. COMMISSIONING AND FUNDING ISSUES
Surgical Interventions currently approved
7.1 Access to gender reassignment surgery will be authorised only where the PCT are satisfied thatsuch surgery is clinically appropriate and where all of the following criteria are met:
a) the patient fulfils the WPATH standards and eligibility criteria
b) the requirements of this commissioning policy are metc) the patient has been recommended for surgery by two gender specialist Consultants at thedesignated tertiary gender dysphoria service, (currently the West London Mental Health TrustGIC)d) the patient is still registered with a GP in EoE SCG aread) the referring PCT has agreed the original funding
Once the elements above are confirmed, surgical interventions will be authorised where clinicallyappropriate as indicated in the tables below:-
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Female to male (F t M) :-
SCG Commissioned and funded approved services PCT commissioned and funded approved services *
SalpingectomyBilateral mastectomy or reduction mammoplasty
(usually carried out through local PCT)
VaginectomyHysterectomy
(usually carried out through local PCT)
Oophorectomy
Phalloplasty
Urethroplasty
Implantation of penile prosthesis
Scrotoplasty with testicular prostheses
hair removal only from areas directly involved inreconstructive 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 inreconstructive genital surgery
* These procedures are not required to be carried out by a specialist gender surgical service andtherefore should be provided locally through referral pathways within local PCT arrangements.
7.2 EoE SCG and each PCT recognise that there can be other medical procedures which could beapplied in any individual case as part of the process of transforming a persons body and thepatients appearance to be more congruent with their new gender, and which will make thatperson feel more comfortable and accepted in their new sexual identity. EoE SCG and each PCTalso recognise that patients undergoing surgical transformation can suffer psychological distressif their appearance does not accord with a body size or shape in their new identity which isconsidered to be acceptable to that individual. However EoE SCG and each PCT recognise andaccept 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
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transformational service for every GID patient. EoE SCG and each PCT therefore has todraw a line between funded services and non-funded services for GID patients in order tostay 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 areseeking the same or similar services outside the GID pathway, and such individuals shouldnot (without good reason) be either in a better or worse position than GID patients.
The Primary Care Trusts (PCTs) have a policy of not funding cosmetic surgery unless underexceptional circumstances, even if there are said to be substantial psychiatric or psychologicalbenefits for the patient from undergoing such surgery. Thus, save for the procedures listedabove, PCTs will not fund additional surgical interventions as part of the GID care pathway. Thisdoes not prevent a GID patient from seeking funding for a surgical intervention by making anapplication 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 throughlocal 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
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 beused 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 willonly be funded in exceptional cases through local PCT individual funding approval processes andas such, referrals should be made through local PCTs although the EoE SCG will offer guidanceto the PCTs, as necessary.
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Revisions / repair
7.5 Surgical revisions of gender reassignment surgery within the NHS and if clinically indicated willbe carried out at one of the commissioned specialist surgical services or at local services,depending on the level of specialist expertise required.
7.6 GPs needing to refer a patient for revision should refer to the local PCT in the first instance forminor procedures, with referral to the original centre for complicated cases or as appropriate forany emergency or emergency situations.
7.7 For all referrals to specialist gender services, the EoE SCG must be informed by the referringclinician 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, theSCG must be contacted as soon as is reasonably practicable - and prior to any approval fortreatment 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 anamed individual basis through the responsible PCT exceptional cases panel. The SCG shouldonly be informed where treatment may be required from specialist commissioned Providers.
7.10 Gender reassignment therapy and / or surgery is provided following rigorous assessment ofindividual eligibility and readiness using this treatment pathway and the commissioned specialistservices. It is part of the assessment process that the patient understands and accepts that thisis an irreversible change to reflect an inherent and not selected gender. It follows that reversal ofgender reassignment surgery will not be funded by the PCTs or authorised by the EoE SCG.
7.11 Revisions or repairs to surgery undertaken outside the NHS, wherever it has occurred, will not befunded by PCTs or the EoE SCG.
Private Treatment
7.12 Patients opting for private treatment at any stage of the care pathway will be managed accordingto the responsible PCTs policy on private/NHS treatment and procedures management. Patientswill be considered on a case by case merit in line with NHS patients on the same care andtreatment pathway.
8. OUTCOME STUDIES
8.1 There are a number of outcome studies in this area, some of which provide a mixed picture. Thepositive results are in the NHS Guidance to GPs 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 ifthere was a lack of family support
Smith et al (2005) which demonstrated no regrets, 91.6% being satisfied with remaining, and8.4% being neutral
9. COST OF TREATMENTS
9.1 Some concern has been expressed as part of the feedback about the cost of treating people withgender dysphoria and its relative priority compared with other treatments that require to be
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funded.
9.2 The cost for each PCT is available on request but the following is an indication of the cost ofproviding treatment based on 2008/09 prices and activity.
West London Mental Health Trust for psychological assessment, support and initial hormonetreatment the cost for all PCTs in the East of England is about 142,000 per annum anaverage 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 about70,000 to 80,000 per patient.
9.3 The total cost 2008/2009 for the East of England was about 700,000 per annum. The limitationson available tertiary treatment as set out in this policy are considered by the EoE SCG to beessential in order to keep the annual cost of treatment for EoE GID patients within this overallsum.
9.4 There is no estimate available of the cost of on-going hormone and / or other treatments thatPCTs 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 tothe East of England Specialised Commissioning Group.
10.2 Patients or carers wishing to make complaints about local arrangements need to do so via theirlocal PCT. Specific complaints about the delivery of services should be addressed to the
provider concerned.
11. REVIEW
11.1 The EoE SCG will review this policy bi-annually or sooner in light of new evidence or guidelinesproduced by the Royal College of Psychiatrists, Department of Health (DH), NICE or any otherrelevant body.
11.2 The next date for review will be January 2011.
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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 InternationalGender Dysphoria Association, 2001
3. A guide to hormone therapy for Trans people. Department of Health, December2007
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, 2008http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919
7. Guidelines for Health Organisations on Commissioning Treatment Services for Trans People,Parliamentary Forum on Transsexualism, 2005 available fromwww.gires.org.uk/web-page_Assets/frontframeset.htm
8. Prevalence of Gender Dysphoria in Scotland: A Primary Case Study. British Journal of GeneralPractice (December), 991-2, as quoted in the Report of the Parliamentary Forum onTranssexualism 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.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.gires.org.uk/web-page_Assets/frontframeset.htmhttp://www.gires.org.uk/web-page_Assets/frontframeset.htmhttp://www.gires.org.uk/web-page_Assets/frontframeset.htmhttp://www.gires.org.uk/web-page_Assets/frontframeset.htmhttp://www.gires.org.uk/web-page_Assets/frontframeset.htmhttp://www.gires.org.uk/web-page_Assets/frontframeset.htmhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084919 -
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Appendix 2
WPATH Standards of Care
(The World Professional Association for Transgender Health's Standards of Care for Gender IdentityDisorders).
The Purpose of the Standards of CareThe major purpose of the Standards of Care (SOC) is to articulatethis international organisation'sprofessional consensus about the psychiatric, psychological, medical, and surgical management ofgender identity disorders. Professionals may use this document to understand the parameters withinwhich 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 ofprofessionals. All readers should be aware of the limitations of knowledge in this area and of the hopethat some of the clinical uncertainties will be resolved in the future through scientific investigation.
The Overarching Treatment GoalThe general goal of psychotherapeutic, endocrine, or surgical therapy for persons with gender identitydisorders is lasting personal comfort with the gendered self in order to maximize overall psychologicalwell-being and self-fulfilment.
The Standards of Care Are Clinical GuidelinesThe SOC are intended to provide flexible directions for the treatment of persons with gender identitydisorders. When eligibility requirements are stated they are meant to be minimum requirements.Individual professionals and organized programs may modify them. Clinical departures from theseguidelines may come about because of a patient's unique anatomic, social, or psychological situation, anexperienced professionals 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 legalprotection and so that the short and long term results can be retrieved to help the field to evolve.
The Clinical ThresholdA clinical threshold is passed when concerns, uncertainties, and questions about gender identity persistduring a persons development, become so intense as to seem to be the most important aspect of aperson's life, or prevent the establishment of a relatively unconflicted gender identity. The person'sstruggles are then variously informally referred to as a gender identity problem, gender dysphoria, agender problem, a gender concern, gender distress, gender conflict, or transsexualism. Such strugglesare known to occur from the preschool years to old age and have many alternate forms. These reflectvarious degrees of personal dissatisfaction with sexual identity, sex and gender demarcating bodycharacteristics, gender roles, gender identity, and the perceptions of others. When dissatisfied
individuals meet specified criteria in one of two official nomenclatures--the International Classification ofDiseases-10 (ICD-10) or the Diagnostic and Statistical Manual of Mental Disorders--Fourth Edition(DSM-IV)--they are formally designated as suffering froma gender identity disorder (GID). Somepersons with GID exceed another threshold--they persistently possess a wish for surgical transformationof their bodies.
Two Primary Populations with GID Exist -- Biological Males and Biological FemalesThe sex of a patient always is a significant factor in the management of GID. Clinicians need toseparately consider the biologic, social, psychological, and economic dilemmas of each sex. Allpatients, 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 4New Patients Care Pathway Entry to the RLE
Patient visitsGeneral Practitioner
Consultant completes GenderIndividual Patient Agreement
(IPPA) and sends copies toGender Identity Clinic and EoE
SCG with copies of fundingapproval letter from the PCT andthe referral letter
Referral allocated toWLMHT Gender
Consultant Psychiatrist
AppointmentOffered
1s
Assessmentwith Consultant
Inappropriate referraldischarged to GP, localConsultant Psychiatrist
2n
Assessment withConsultant
Follow-upappointments
every 3-4 months
Group Session every2
ndMonday if required
or appropriate
Start 2-year real lifeexperience
Gender ReassignmentSurgery
Follow-up appointments before referral back toGP/CMHT
Notes
1. 1st
and 2nd
assessments must be carried out by two different WLMHT GIC Consultants.
2. No treatment will commence without firstly gaining PCT funding approval for the full treatment pathway.
3. No treatment will commence until the EoE SCG has evidence of PCT funding approval and authorises a commissioned providerto 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 for the RLE, then assessment by and referral from the WLMHT will be requiredfor surgery which will only be authorised by the SCG if funding has been agreed by the responsible PCT. There will be no fasttrack of any such patient who will be referred in strict rotation and turn with all other patients referred to the WLMHT GIC.
Referral for Surgery indicated
2 x WLMHT Consultants signatures required onreferral letter to SCG and surgical Provider
GP refers to localConsultant Psychiatrist
Local ConsultantPsychiatrist refers to PCT
for funding
Funding approved for wholetreatment pathway including
surgery where indicated
Funding not approved Consultant informs patientand patients GP
Local Cons Psychiatrist /Cons Specialist diagnosesGD whilst eliminating any
other mental disorder
Funding approved by localPCT and informs referring
Consultant and SCG
Successful completionof the two year real life
experience
Surgical providercompletes IPA and
gains SCGauthorisation
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Appendix 5Gender Dysphoria Care Pathway Direct referral for gender reassignment surgery (not repair)
Patient visitsGeneral Practitioner
Consultant completes GenderIndividual Patient Agreement
(IPA) and sends copies to GenderIdentity Clinic and EoE SCG with
copies of funding approvalletter from the PCT and the
referral letter
Referral allocated toGender Consultant
Psychiatrist
AppointmentOffered
1s
Assessmentwith Consultant
Inappropriate referraldischarged to GP, localConsultant Psychiatrist
2n
Assessment withConsultant
Gender ReassignmentSurgery
Follow-up appointments before referral back toGP/CMHT
Referral for Surgery indicated
2 x WLMHT Consultants signatures required onreferral letter to SCG and proposed surgical Provider
GP refers to localConsultant Psychiatrist
Local Consultant Psychiatrist refers to
PCT for funding
PCT informs referringConsultant of funding
approval in writing
Funding not approved Consultant informs patientand patients GP
Local ConsultantPsychiatrist assesses
Funding approved forsurgery by local PCT
Successful completionof the two year real life
experience evidencedwith appropriateness for
surgery indicated *
Surgical providercompletes IPA and
gains SCGauthorisation
Notes
1. 1st and 2nd assessments must be carried out by two different WLMHT GIC Consultants who will assess successful completion ofthe two year real l ife experience.
* 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 forall or part of the two year RLE treatment pathway prior to surgery.
2. No treatment will commence without firstly gaining PCT funding approval for the treatment pathway indicated.
3. No treatment will commence until the EoE SCG has evidence of PCT funding approval and authorises a commissioned providerto 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 bereferred 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 ofEn land care and treatment athwa for ender d s horia.
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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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Appendix 7
Individual Patient Agreement (Gender Pathway - Treatment)
1. Proposed Providers Details
Name of Proposed ProviderOrganisation West London Mental Health Trust (Gender Identity Clinic)
Telephone No.
Safe Haven Fax No.
Provider CodeProposed InitialAssessment Date
2. Patients Details
Name Gender
Date of Birth Ethnicity
NHS No. Responsible PCT
Home Address & PostcodeRegistered GPsFull Name
Registered GPsPractice Code
Registered GPs Full Correspondence Address& Telephone No
Telephone No.
3. Patient Referral and Funding Status
Referral Origination NHS GPNHS
CommunityPsychiatrist
Other(Pleasestate)
Has funding already been agreed withthe responsible PCT?
YES NO
If funding has been agreed, please ensure that a copy of the funding confirmation from the responsible PCT
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 beenagreed)
Referring Clinicians Full Name
Referring Clinicians full postal addressincluding postcode
Referring Clinicians telephone contactnumber
For internal use onlyEinstein entry / update(Initials and date)
Authorisation Faxed to Provider(Initials and Date)
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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 stipulatedat Section 3 of this IPA) on behalf of the above Purchasing Organisation.
Name Gordon J Pownall Designation Head of Specialised Mental HealthCommissioning EoE SCG
Telephone No. 01279 666332 Fax No. 01279 666982
DateAuthorisationReference
Signature
On behalf of the East of England 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 stipulatedat Section 3 of this IPA) on behalf of the proposed Provider Organisation (as detailed at Section 1 of this IPPA).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: Jo Murphy Designation
Address
East of England SCGEndeavour HouseCoopers End RoadLondon Stansted AirportEssexCM24 1SJ
Telephone No.
Fax No.
7. Change in Circumstances
Any change in treatment and fee will require a new Individual Patient Agreement (IPA) to be completed,signed and sent to the East of England Specialised Commissioning Group prior to the commencement of
any change in treatment option.
8. PLEASE COMPLETE, SIGN AND FAX THIS IPA TO 01279 666982PRIOR TO COMMENCEMENT OF TREATMENT
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Individual Patient Agreement (Gender Pathway - Assessment)
1. Proposed Providers Details
Name of Proposed Provider
Organisation
West London Mental Health Trust (Gender Identity Clinic)
Telephone No.
Safe Haven Fax No.
Provider CodeProposed InitialAssessment Date
2. Patients Details
Name Gender
Date of Birth Ethnicity
NHS No. Responsible PCT
Home Address & PostcodeRegistered GPsFull Name
Registered GPsPractice Code
Registered GPs Full Correspondence Address& Telephone No
TelephoneNo.
3. Patient Referral and Funding Status
ReferralOrigination
NHS GPNHS
CommunityPsychiatrist
Other(Pleasestate)
4. Referral Information
This IPA authorisation is for assessment only a diagnostic report should be returned to thereferring Clinician as below and no treatment should be provided until an IPA authorising
treatment has been received by the Provider from the EoE SCG
Referring Clinicians Full Name
Referring Clinicians full postaladdress including postcode
Referring Clinicians telephonecontact number
For internal use only
Einstein entry / update(Initials and date)
Authorisation Faxed to Provider(Initials and Date)
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4. Authorisation Details- (Responsible Commissioner)
I confirm that I the undersigned have the delegated authority to authorise the assessment (as stipulated atSection 3 of this IPA) on behalf of the above Purchasing Organisation.
Name Gordon J Pownall DesignationHead of Specialised Mental HealthCommissioning EoE SCG
Telephone No. 01279 666332 Fax No. 01279 666982
DateAuthorisationReference
Signature
On behalf of the East of England Specialised Commissioning Group
5. Authorisation Details (Proposed Provider)
I confirm that I the undersigned have the delegated authority to authorise this intervention (as stipulated atSection 3 of this IPA) on behalf of the proposed Provider Organisation (as detailed at Section 1 of this IPPA).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: Jo Murphy Designation
Address
East of England SCGEndeavour HouseCoopers End RoadLondon Stansted AirportEssex CM24 1SJ
Telephone No.
Fax No.
7. Change in Circumstances
Any change in treatment and fee will require a new Individual Patient Agreement (IPA) to becompleted, signed and sent to the East of England Specialised Commissioning Group prior to the
commencement of any change in treatment option.
8. PLEASE COMPLETE, SIGN AND FAX THIS IPA TO 01279 666982PRIOR TO COMMENCEMENT OF ASSESSMENT
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Appendix 8
Status of Policy
22 November 2007The SCG Board agreed that from April 2008, the SCG would commission both psychological andsurgical aspects of the gender dysphoria pathway
14 January 2008First draft policy out for consultation
February 2008 to April 2008Comments received by SCG.
May 2008Policy considered by Directors of Commissioning and MH/Acute Commissioners
June 2008Further comments received and policy updated. Comments responded to.
July 2008Final 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 GroupRevision of approved / non approved procedures into tabular layout
15 April 2010
Policy accepted by the East of England Clinical Advisory Group including the updates / revisionand 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 forcomments to PCTs.