Original Document: GIRES – NHSE – Service Spec comments (DOCX, 51.2KB)
15 October 2017
The relevant paragraphs and appendices in the Non-Surgical (NS) and Surgical (SU) service specifications are noted within the following text.
NHS England intends to subcontract the task of analysing the responses to its survey. Although this may be adequate for the tick-box elements of the responses, it is not appropriate for the comments that are submitted, including these from GIRES. The comments should be viewed by the key people in the CRG for adult gender identity services and in NHS England Specialised Commissioning. Any attempt to summarise them, especially by a subcontractor who is unfamiliar with gender identity services and those that use them, will greatly reduce their value.
GIRES comments are listed below under the headings where there is provision for them to be stated in the NHS England Survey .
3 – Inconsistency in care quality, differing levels of access, and outdated service models – Non-Surgical Interventions
While we welcome acceptance that national waiting time requirements will apply NS 2.2, the major unresolved problem within NHS gender identity services is how to increase capacity cost-effectively and safely so that the waiting time requirement can be achieved. Within cash constrained NHS England, this requires measures to improve substantially the productivity of the GICs, rather than simply recruiting more staff to carry on with previous approaches to care and administration.
There are other possible opportunities for improving the productivity of gender identity services that involve fundamental changes in the model of care, for instance shifting assessment into primary care, as has been proposed for Wales. However, these lie outside the scope of the service specifications.
The first sentence in section NS 2.3 should include the words “cost effective: “Provide a high quality and cost effective service for trans people …….”
Nonetheless, the Service specifications for non-surgical care does offer scope for more improving productivity of the clinical resources safely by:
- Requiring only two assessments prior to preparing a treatment plan in straightforward cases (NS Appendix A) only one of which needs to be face to face (NS Appendix E); however there will also be an initial triage process. It needs to be made clear that triage forms part of the 1st assessment and does not require a separate appointment
- Providing online/telephone assessments for patients. NS 2.4
- Not requiring re-assessment for young people whose gender dysphoria was assessed prior to transfer to adult services NS Appendix D
The minimum time intervals between assessments should be stated NS Appendix E. The lead Clinician will undertake those that determine the interventions documented in the Individualised Treatment Plan NS Appendix H.
It should be made clear that not all individuals will need to have a Named Professional NS Appendix G. For those that do not, making them see a Named Professional at three monthly intervals is a waste of clinical staff’s time and will slow the individual’s progress.
There is scope for undue delay in the statement that “Individuals must be given sufficient time to reflect …,” NS2.14. Most individuals have already spent many years reflecting on their gender dysphoria and their options for responding to it. We suggest adding the words “but this must not result in undue delay in the assessment and treatment processes.”
We also welcome the statements that:
- Individuals will have full personal autonomy NS 2.2
- It is not a requirement for access to endocrine and other pharmacological interventions to undertake a change in social role NS Appendix J
- Psychological interventions will not be offered routinely or considered mandatory NS 2.17b
- Providers will not deliver, promote or refer individuals to any form of conversion therapy NS 2.17b
- Gender diverse people, including those who are non-binary, trans-feminine, trans-masculine, genderqueer non-gender and others, must have access to the treatments and the interventions described in the service specifications NS 3.1.
We suggest that the Care Pathway and the Individualised Treatment Plan (ITP) should be described separately and more prominently NS 2.5. This distinction is muddled by using by using the plural term “pathways” at the start of this paragraph. The ITP should also be mentioned in paragraph NS 2.16. A new ITP should be developed for individuals who return for treatment after discharge.
There is no space provided in the survey to comment on the proposal that young people who need to access specialist gender identity services will be subject to an age criterion. All individuals aged 18 and over must be referred to an adult GIC. Those who are aged 17 years and above may be referred to an adult gender identity clinic NS 3.1 and Appendix D, or the Gender Identity Service for Children and Adolescents (GIDS). The GIDS can accept referral of young people aged 17, who will be given the option of attending an adult CIG. A transfer from the GIDS will not occur until the young person has reached age 17, although the request may be made earlier NS 2.8. Given the long waiting times for a first appointment at a GIC (apparently up to 18 months) or the GIDS (apparently up to 10 months). Thus there is great uncertainty for young people aged 16 and 17 about where their care will be provided.
GIRES has argued strongly and factually, on clinical and scientific grounds, against the application of arbitrary age criteria in offering treatment for gender dysphoria in young people, see: Gender Affirming Hormones for Adolescents – Some Suggestions (PDF, 420KB)
Treatment decisions should be based on need and readiness criteria.
There needs to be a careful triage process for all young people regardless of age to determine where assessment should be continued, be that within the GIDS or in a GIC for adults. However, for administrative clarity, rather than in respect of clinical factors, it needs to made clear where that triage process will occur. We suggest requiring triage for all young people aged 16 and over to be undertaken within a GIC and within the GIDS for those who are younger. There it should be determined whether the GIC or the GIDS will be the most appropriate place for further assessment. This process should be added to paragraph 2.9, as well as to the flow diagram in NS Appendix A.
The minimum age for chest reconstruction and genital surgery has been set at 17, as in the Interim Protocol NS 2.18 c. This appears to be an arbitrary decision, not based on evidence. As for entry into gender identity services, treatment decisions should be based on need and readiness criteria.
Individuals with acute physical or mental health problems should not be excluded NS 3.1. In fact they seem to be included under additional assessment consultations in NS Appendix E.
We strongly oppose excluding individuals whose presentation relates primarily to intersex conditions NS 3.1. These individuals may experience gender dysphoria, for which treatment is essential.
As for surgeons, Named Professionals and Lead Clinicians should demonstrate good communication with patients through multi-source feedback.
4 – Inconsistency in care quality, differing levels of access, and outdated service models – Surgical Interventions
The service specifications for Surgical Interventions contains many sections that are largely similar to sections of the specifications for Non-Surgical Interventions. Consequently, many of the points made in above and below need not be repeated here.
While we welcome acceptance that national waiting time requirements will apply SU 2.2, the major unresolved problem within NHS specialised surgical services is how to increase capacity cost-effectively and safely so that the waiting time requirement can be achieved. Within cash constrained NHS England, this requires measures to improve substantially the productivity of these services, rather than only recruiting more staff to carry on with previous approaches to care and administration.
The first sentence in section NS 2.3 should include the words “cost effective: “Provide a high quality and cost effective service for trans people …….”
The service specifications for Surgical Interventions contain no proposals for improving productivity cost effectively and safely.
We welcome the statements that:
- Individuals will have full personal autonomy SU 2.2
- Gender diverse people, including those who are non-binary, trans-feminine, trans-masculine, genderqueer non-gender and others, must have access to the treatments and the interventions described in the service specifications SU 3.1.
We suggest that the Care Pathway and the Individualised Treatment Plan (ITP) should be described separately and more prominently SU 2.5. This distinction is muddled by using the plural term “pathways” at the start of this paragraph. The ITP should also be mentioned in paragraph NS 2.16. A new ITP should be developed for individuals who return for treatment after discharge.
One of the key matters that should be discussed at meetings of peers is how to improve productivity safely SU 2.7. Also, it is not clear to whom their annual report is to be submitted and how action will be initiated on its findings.
Regarding the WPATH Standards of Care, this should be the latest version. WPATH is about to start updating version 7. SU 2.7.
Orchidectomy appears to be offered as a stand-alone procedure, which for instance might be sought by non-binary people. On grounds of equal treatment, Hysterectomy, Bilateral Salpino-oophorectomy and Vaginectomy should also be offered as stand-alone treatments for gender dysphoria and not only as components the standard practice masculinising genital surgery procedures SU 2.13.
The refusal to commission reversal of previous gender reassignment surgical intervention seems inappropriate. SU 2.14 and 2.15. It is not impossible that there may have been an earlier misdiagnosis, for instance in a non-binary individual who was first assessed in the era of only binary diagnoses. Anyone who then expressed a non-binary experience was judged to be ambivalent and not suitable for physical interventions.
A limit of 18 months, following an earlier gender reassignment procedure, for allowing readmission for specialist surgery is far too short. Individuals do struggle to cope with unsatisfactory surgical outcomes for much longer than that. Being forced to rely on a non-specialist surgeon for treatment of complications is unjustified SU 2.15. The Clinical Outcomes data should include reversals SU 4.2
It should be noted that, in addition to donor site skin epilation as described in SU 2.16, any individual may be offered facial hair reduction treatment NS Appendix K.
The minimum age for chest reconstruction and genital surgery has been set at 17, as in the Interim Protocol SU 3.1 and Appendix D. This appears to be an arbitrary decision, not based on evidence. GIRES has argued strongly and factually against the application of arbitrary age criteria in offering treatment for gender dysphoria in young people, see: Gender Affirming Hormones for Adolescents – Some Suggestions (PDF, 420KB)
The requirement that the second referral letter for genital surgery must be from a clinician, qualified to be a lead clinician, not directly involved in the individual’s care seems unnecessary. This might impose an undue travel burden on the individual they are attending a small GIC that is reliant on a few clinicians.
7 – Requirement to be registered with a GP
The terms “registered with a GP practice” and “registered with a GP” are both used in paragraph NS 3.1. It would be helpful to know which is meant. In any case this rigid requirement is not appropriate in every case. The GP is not the only source of referrals NS 2.6. GIRES favours assigning responsibility for prescription and monitoring of hormone medication to GPs. However, some GPs are resistant to that. Not all trans people, especially those who are non-binary, will choose that treatment. Perhaps it should be stated that while it is desirable that all individuals provided with specialist surgical and non-surgical services are registered with a GP practice, where this is not practical the GIC will make other arrangements.
8 and 9 – Only registered medical practitioners in GICs can refer for genital surgery.
This seems a sensible precaution
11 and 12 – Equality and Health Inequality
All protected characteristics should be mentioned NS 2.2
13 and 14 – Options for GP prescribing
There is a clear requirement for the GICs to provide information and support for GPs – NS Appendix J. Information is also provided by the GMC and the Royal College of GPs. GPs should therefore be able to undertake the prescription and monitoring of hormone medication.
We strongly prefer placing the responsibility for prescribing and monitoring hormone medication with GP practices. The extra workload that would be placed on the GICs if they undertook these tasks would detract from their ability to carry out assessments. The GIC might have to step in infrequently if it were not practical to provide care within a GP practice. Otherwise, the GIC should not be responsible for prescribing and monitoring hormone medication. Even if only the first prescription were issued by the GIC, the GP would still have to undertake monitoring.
15 – General Comments
There appears to be no justification for the length of experience required for senior clinical lead (3 years) NS 2.4 and lead clinician (2 years) NS Appendix H. The clinician’s capabilities to do the job should be assessed, without regard an arbitrary time period.
All MDTs need to include a hormone prescribing physician or an endocrinologist NS 2.4. It is a requirement that a medical qualified practitioner in the specialist multi-disciplinary team will provide the GP with patient specific ‘prescribing guidance’ NS Appendix J.
The term “gender dysphoria as a result of gender incongruence” used in the service specifications is overly long; “gender dysphoria” will suffice NS 2.9 and NS 4.2.
More information should be provided on the national network NS 2.3
The complaints handling process should not reveal the identity of the person making a complaint to the subject of the complaint, without the complainant’s prior written consent NS 2.4. Breaches of confidentiality have had adverse consequences for some trans people,
It seems worthwhile to mention the TranzWiki directory of the 400 national and local trans support organisations: www.TranzWiki.net NS 2.3
It should be made clear that conservation of fertility will be provided on the same basis as for any other treatment that results in loss of fertility NS 2.15
Pre-existing voice difficulties should not preclude access to voice and communication therapy for people referred to the GICs. It seems difficult in practice to treat them separately from those that derive from change of gender role and expression NS 2.17 a. The GIC should take on all such therapy for its assessed individuals.
It is misleading to say that the study published by GIRES in 2009 suggests prevalence for England of around 20 per 100,000 population NS 3.2. That figure is very out of date. Far higher figures have been published since then, including for the UK  and The Netherlands . Moreover, the GIRES the study clearly identified the growth that was taking place, 15% per annum at that time. Note that the term data is plural, whereas the opening words of NS 3.1 state “There is no official data …..”. The data reported in the service specifications (178% increase) indicate an average growth rate in referrals of 22 % per annum in the five years to 31/3/17. Data published by the GIDS show that the average annual growth rate among those aged 18 and under during the same period was 58% per annum.
The proposals seem helpful and realistic regarding:
- Service users’ involvement NS 2.4
- The inclusion of family members in appointments NS Appendix E
- The provision of therapeutic support, but not therapy, for partners and families NS Appendix I
- Individuals who have a Gender Recognition Certificate NS Appendix E.
- Physical examination NS Appendix F
- Chaperones NS Appendix F
- The exclusion of the Lead Clinician from providing an individual’s specialised therapy NS Appendix H.
- Imposing no limit on the amount of facial hair reduction treatment that any individual may be offered. NS Appendix K.
- Requiring a written treatment plan for all patients NS Appendix L, 303
There is unexplained duplication of the quality indicators contained in NS Appendix L, 101 to 103.
 Glen F & Hurrell K (2012) Technical note: Measuring Gender Identity. Equality and Human Rights Commission. https://www.equalityhumanrights.com/sites/default/files/technical_note_final.pdf
 Kuyper, L., & Wijsen, C. (2014). Gender identities & gender dysphoria in the Netherlands. Arch. of Sexual Behavior, 43, 377–385 https://www.ncbi.nlm.nih.gov/pubmed/23857516