Response to the Interim Service Specification for Specialist Gender Dysphoria Services for Children and Young People – Public Consultation
1 Are you responding on behalf of an organisation? Yes, on behalf of the Clinical Advisory Network on Sex and Gender (CAN-SG). Our website which includes references regarding our views including those expressed in this response can be found here:- Clinical Advisory Network on Sex and Gender (https://can-sg.org).
2. In what capacity are you responding? We are a multidisciplinary, evidence-based and independent group of regulated clinicians (including some members with experience of working in specialist gender services and some members who are also affected parents).
3 To what extent do you agree with the four substantive changes to the service specification listed in the supporting documents?
a) Composition of the clinical team
We agree.
The Interim Cass Review is right that a “fundamentally different service model is needed” and that there is lack of consensus and open discussion about the nature of gender dysphoria and the appropriate clinical response.
We welcome the redevelopment of services for gender questioning children and adolescents to bring them in line with standard good practice in CAMHS and to make sure that complex co-morbidities are not being neglected. We agree there should be experts in paediatric medicine, neurodisability and mental health and we agree with a multidisciplinary approach including nurses and social workers as well as doctors and psychologists. We agree that there should be strong links to primary care. There has been a large rise in referrals of birth registered females to GIDS and concerns about birth registered females with sudden onset of gender dysphoria during or after puberty as being a new, distinct group. Therefore, it is important that the needs of this group are particularly considered. Good links with sexual health and gynaecology with clinicians who have an interest in the needs of this group are important. Sensitive discussion regarding conditions such as PCOS and issues with menstruation is likely to be needed as part of managing gender and bodily distress of this group.
CAN-SG Response to Interim Service Specification Consultation November 2022
While there is value in having a team approach, there are also dangers in teams becoming cut off, and we welcome emphasis on considering collaboration with other system partners (see 3c) to ensure all aspects of care are provided.
However, we remain concerned about the risk of replicating GIDS and including its flaws in other locations. Ideally, we do not think that there should be a referral to a “gender service”: this may still result in multiple co-morbidities that are being expressed through gender dysphoria being falsely labelled as the central or primary problem. It risks children being ‘badged’ or labelled by themselves, their family or the invested clinicians as primarily having a problem with gender, whereas a high proportion of multiple co-morbidities may be expressed through gender dysphoria. This concept of multiple co-morbidities is described well in the diagram within the Interim Cass Review Feb 2022 on p57.
We welcome the interim service specification setting the Service within regional centres of paediatric medicine already proficient in research and training, with strong links to mental health services including expertise in autism and neurodevelopmental disorder. We agree with highlighting the need for robust safeguarding procedures and that “individual care plans…based on a standardised approach to assessment and diagnosis” are needed.
We welcome the statements in Appendix B of the interim service specification that staff should be aware of the wider social context and of the contested debate. This should go further: it is essential that staff who are recruited are committed to allowing discussion and consideration of a variety of perspectives within an evidence-based framework and that this is actively addressed during recruitment. We note that the Forstater judgement found that gender critical beliefs are protected in the workplace and the new interim Service must be mindful of this. See Q2b below for proposals on how a neutral supportive clinical culture in line with Cass can be developed.
We welcome the clear statement that “the primary intervention for children and young people…is psychosocial (including psychoeducation) and psychological support and intervention” as this is in line with the principle of providing the least invasive, effective treatment with “first do no harm”. We note the need for specific psychological treatments for gender distress and incongruence to be developed.
The section on “Standardised Assessment” is helpful. We welcome the inclusion of focus on the needs of children and young people in care, family functioning, developmental needs, and emerging sexuality and sexual experience in adolescents. The interim service specification does not explicitly mention difficulties with emerging same-sex sexuality where there has been bullying from peers or homophobia within the family but this will be important to consider. It will also be important for the assessment framework to include issues with substance misuse.
We welcome the clarity that “the Service will take part in continuous data collection reporting and audit” and that the National Institute for Health Research will be tasked to develop well-structured research programmes including looking at epidemiology, the course of gender querying and outcomes of psychological treatments to reduce distress.
We propose that all those referred to the multidisciplinary team must be part of whole cohort service evaluation to ensure data is collected so that patient outcomes can be collected from records (maybe for decades) and individuals contacted to elicit outcomes and understand
service experiences. We would like to highlight that this may require subdivision of service users into groups according to different needs and that this may help clarify aetiology and treatment pathways. Embedded research opportunities including randomised trials and other high-quality studies can also be offered (see 6 below).
Lastly, although the focus of this consultation is children and young people under 18 years, it would be incoherent for NHSE not to extend the thinking from the Cass Review into services for young adults (i.e. 18-25 year olds who are still developing).
b) Clinical leadership
We agree.
We think that high quality leadership with commitment to evidence-based interventions and learning culture is more important overall than a particular professional background. However, if the new Service is set in paediatric centres there is a logic to the clinical lead initially being a medical doctor. This clear leadership model may overcome the perceived problem of avoidance of responsibility for complex prescribing decisions (‘everyone and no one’ taking responsibility). It appears that paediatric endocrinologists and others have seen mental health and psychology staff as responsible for decision making, and vice versa, when it is clearly the prescriber’s legal responsibility. This will be particularly important whilst the Service is developing and embedding. Co-location of staff from different specialties involved in complex care would also be helpful as it can support the joint thinking and challenge that are needed to formulate and manage treatment.
We do not agree with the plan to involve current staff of GIDS especially service leaders; “The Tavistock and Portman NHS Foundation Trust and the endocrine teams basedat University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust will play a vital role”. It is essential for new leaders of the propose service to understand the advice given by the Cass Review, and to be committed to following it; their practice must be informed by best clinical evidence rather than driven by ideology.
They need to implement a change in culture as well as service model. We believe that this will require new personnel and a clean break from current leadership to achieve public confidence and so that previous ways of working do not adversely affect decisions and practice from the top down. While many members of staff may have useful skills and experiences, they should apply in open competition for the new posts. It is important to have careful interview processes, good supervision structures and a change in culture. An assertive and sensitive approach will be needed to support practitioners (both new staff and those with any previous GIDS experience) to shift to the more neutral response required, while valuing relevant experience. See response to Q6 for details of how this may be achieved.
c) Collaboration with referrers and local services
We partially agree.
We welcome the tiered approach as part of avoiding over-medicalisation and minimising iatrogenic harms. We agree that a collaborative approach with local referrers and providers is crucial and support the requirement for liaison at time of referral (and would add that this needs to include local services being mandated to providing support for those not deemed appropriate otherwise referral in will be default). We also support the concept of liaison support from the new service to local services, and can see that this has potential to ensure that young people get whole person care, especially those with mental health and neuro- developmental problems. Such liaison and collaboration can extend to specialist services not available within the team and with the patient’s GP.
However, we caution against local services, especially primary care, being pressured to prescribe beyond the limits of their competence or where there are differing views about the appropriateness of prescribing (mental health related).
The Interim Service Specification states that, “The Service will formulate a collaborative care plan, co-produced with local service/s identifying respective roles including local assessment and/or intervention support for co-existing conditions. The Service will not normally undertake assessments or intervention for co-existing conditions which would be part of the local service’s ordinary remit.”
We highlight that to successfully manage the complexity of this service user group, attention will be required to attend to difficulties including post-traumatic stress disorder and complex PTSD, sexual assault, emerging emotionally unstable personality disorder, mind-body disturbance due to neurodivergence disorders (NDD), anxiety and mood disorders, obsessive- compulsive disorder, eating disorders and other types of body dysmorphia. We think greater clarity regarding the responsibility of the Service and of local CAMHS would be helpful regarding the management of co-morbid conditions particularly mental health conditions.
For example, waiting lists for assessment for autism and NDD are often very long in standard services – how will the new Service provide these assessments where needed?
We welcome the emphasis on discussion and agreeing a collaborative care approach but note that this can be hard to do well in practice between services.
We have particularly serious concerns that CAMHS services are already hugely overstretched and have significant difficulty meeting demand. They are unable to meet even a fraction of the mental health need amongst children and young people at present, even without having to deal with the increasing cohort of gender questioning young people.
Many referrals from primary care do not meet the threshold for being seen at CAMHS and those that do still have to wait up to a year for treatment even where there are serious concerns e.g. depression with suicidality.
There must not be a two-tier system with a perverse incentive for referrals to a gender service, as will happen if gender questioning children are fast-tracked or if there is a different threshold for accepting referrals of gender questioning children to CAMHS compared with other mental health difficulties.
So although we welcome the intention of the interim service specification that children questioning their gender should have holistic mental health care that addresses all their other problems, we want to emphasise that this is meaningless unless both CAMHS and the new Service have sufficient resources to meet demand within a reasonable timescale. The new Service specification needs to be more than a wish list – it should specify services in some detail and should recognise what needs to be done to bring the Service and CAMHS up to the standard required in terms of staffing, training and timeliness.
We are very concerned about the possibility of service users seeing a psychologist from CAMHS for a co-morbid condition (e.g. anxiety) whilst simultaneously seeing a different psychologist for gender distress in the Service. It seems an artificial distinction, it is unlikely to be holistic and could lead to risk of splitting, especially if the psychology team is responsible for making recommendations for intervention.
Instead, we propose that there is a need for some aspects of therapeutic psychological support to be separate from any criterion-based pathway to medical intervention in the future. We recognize that if medical interventions, or social transition interventions are to be considered, then an understanding of any unmet psychiatric and neurodevelopmental and ongoing social adversity needs is critical (potentially as a contraindication) in any decision making. However, it is also crucial that emotional support is available outside of a criterion-based pathway towards an intervention. This is because a therapeutic environment requires not just the practitioner to be neutrally supportive, but also that the young person can freely express their fears and any underlying ambivalence about transition, rather than feeling they must ‘perform’ certainty to be considered for medical intervention.
d) Referral Sources
We agree.
Children should only be referred to the service through their GP or local NHS professionals. Our only minor concern is that it may not be suitable for less experienced practitioners such as school nurses to make such referrals. We note the comment that this is for Phase 1 only. We remain concerned about schools or non-health settings promoting ‘self-diagnosis’ or social transition prior to referral.
In any future developments, it remains essential that the broader mental health issues are considered and addressed and that lobby groups should not be part of the referral process.
4 To what extent do you agree that the interim service specification provides sufficient clarity about approaches towards social transition?
We partially agree.
We note that there is a world of difference between self-expression and having the outside world formally recognise you in civic and legal ways. This distinction between normal gender non-conforming self-expression and external social transition interventions by schools should be more clearly articulated. Harmful gender stereotypes must be challenged including through gender non-conforming expression.
We agree that social transition is an active intervention. We are concerned about the risk of social transition making resolution of gender distress harder and promoting progression to medical and surgical treatments. We agree with the interim service specification where it references evidence that “in most pre-pubertal children, gender incongruence does not persist into adolescence”.
We are concerned that decisions about social transition may be made at a very early stage, prior to referral to the new Service. It may be encouraged by schools or non-medical settings or even by psychologists or counsellors working outside of the Service. This may be harmful. We recommend that there is much stronger guidance and advice against this to schools and social workers. Social transition should only be considered where there is wide agreement it is necessary (and even the concept of ‘necessity’ needs to be tested in formal research). No child should be socially transitioned in school without consultation with the clinical professionals from the new Service who are supporting that child, along with parents or carers.
Regarding adolescents, the interim service specification states that adolescents will only be advised to socially transition where gender dysphoria is consistent and persistent AND associated needs and risk have been addressed AND the young person gives informed consent AND it is needed to alleviate distress or poor functioning.
Nevertheless, we do not believe that the case has been properly proven by robust research that the perceived “need” is alleviated. We doubt that “informed consent” is possible given (a) the uncertainties and potential long-term consequences, (b) the inability of pre or peri- pubertal young people to understand adult functions (such as sexual pleasure) that may be threatened by further transition, and (c) to highlight the risk of “scripts” regarding how to persuade clinicians already being shared on social media.
We also note that there has been irresponsible use of misleading statistics regarding risks of self-harm by lobby groups. Consideration of, and discussion around, such risks must be properly evidenced-based and carried out in a responsible manner in line with best practice around suicide prevention. For these reasons we suggest removing distress from the criteria for social transition.
Although the focus of this consultation is only children and young people under 18 years, NHSE must take the opportunity to realise that good policy in this area must filter upwards to adult services to ensure seamless services, and consistent good, evidence-based practices.
5 To what extent do you agree with the approach to the management of patients accessing prescriptions from un-regulated sources?
We agree
The Service should not assume responsibility for prescribing recommendations nor enter into shared care where patients have accessed prescriptions from un-regulated sources. We would like NHSE to enter into memoranda of agreement with regulatory bodies to clarify that prescribing GnRHa or masculinising/feminising hormones to children or young people should not be initiated outside of the interim Service except in extreme circumstances that would have to be justified. We believe that NHSE should support professional and criminal sanctions being applied to those involved in the supply of unregulated hormones or GnRH. The advice around safeguarding should be made stronger – namely it should be stated that this “must” happen rather than “should” happen. Safeguarding referrals can and should be made directly by the Service rather than merely giving advice to the GP.
CAN-SG member professionals have mixed views regarding use of GnRHa (ranging from ‘not at all’ to ‘only within randomised controlled trials’). We note that the interim service specification states that GnRHa will only be prescribed within a formal research programme with adequate follow-up into adulthood. This represents a highly significant change in NHS England’s approach.
CAN-SG members think use of GnRHa for gender dysphori is unethical and unjustifiable based on available evidence and the lack of an underlying biological rationale and explanation. With regards to use within a randomised control trial setting, some members believe this is also unethical and goes against clinical trial ethics and regulatory safeguards, others believe GnRHa could be used within a randomised controlled trial setting. What is agreed is that the use of before/after observational research trials should not be used as it will not be possible to interpret long term harms or benefits.
6 Are there any other changes or additions to the interim service specification that should be considered in order to support Phase 1 services to effectively deliver this service?
Yes. There are some wider issues CAN-SG would like to see addressed:
- i) One major concern here is that the new services may rely too heavily on current GIDS staff, when their approaches and non-evidence based thinking (for example, the endocrinologists prescribing life-long medication on concepts such as ‘doing nothing is not neutral’, or ‘children always know who they are’) are the problem that needs to be solved. The new specification should therefore include a programme (of education, supervision, case discussions, audit) to support the development of a clinical culture and clinical decision making in line with the Cass recommendations: understanding the current lack of evidence (being able to be confident about such uncertainty); understanding and practicing with a neutral supportive stance (neither affirming that an individual a different sex to that they were born into, nor carrying out conversion therapy).
- ii) We are also concerned that children exploring identity in an age-appropriate way should not be pathologized. The current cultural reification of “gender identity” may be socially driving an increase in gender distress and an increase in potentially harmful medical and surgical interventions. A specialist service risks increasing this social pressure, but teachers, families and peers also play a part. We think a wider and robust government enquiry including looking at schools, social media, professional training, training around gender identity as part of EDI (equality, diversity and inclusion) strategies will be needed.
- iii) Regarding research:-
- We propose that the new services should pilot procedures for future phase 2 services to require individuals be part of a whole service evaluation cohort (with optional embedded research studies) which will enable tracking progress of all individuals referred.
- Regarding the use of puberty blockers, enrollment into non-randomised trials would be problematic given that such longitudinal cohorts are subject to too much bias in their interpretation. It seems unlikely that results would be significantly different from previous inconclusive non-randomised studies. It could also constitute research waste as well as opening the door to large volumes of prescriptions for puberty blockers with the false safeguard of being part of a trial.
- Much more thought needs to go into areas for research with partners outside health services as there are so many areas of uncertainty. The new specification could include a stakeholder, including public and patient engagement, process for developing research priorities.
- iv) The Service should entirely dissociate from WPATH and its claim to any authority in this field. The self-appointed gender ‘specialist’ society is biased, i.e. it ‘writes and marks its own homework’, without regard to the standard ways medical evidence is judged objectively. WPATH has produced pseudoscientific clinical practice guidelines (or Standards of Care) that have been found to be ‘incoherent’ and not acceptable as ‘gold standard’ and has not changed its approach. WPATH’s latest 8th iteration (2022) completely ignores the much higher quality review of the evidence on puberty blockers and cross-sex hormones that was performed by NICE (2021) that led to the Cass review. It also included a controversial chapter on “Eunuchs” with a link to a fetish website. The WPATH guidelines as a whole are not compatible with the recommendations of the Interim Cass Review given the focus on affirmation only.
- v) There needs to be some reconsideration by NHS England of its support as a signatory of a Memorandum of Understanding regarding a proposed conversion therapy ban (initially relating only to sexual orientation). There is no mention of the serious ideological and legal clash between the interim Cass Report, the new interim Service specification, and an advocacy-led campaign for “transgender” to be added to the proposed ban. Given the uncertainties about the interplay between new demands for medical interventions for gender identity and old concerns about internal and systemic homophobia (‘transing away the gay’), it is unwise for NHSE to be seen to be partisan on what should be a medical (not ‘medicalising’) matter. ‘Identity’ (and subjective identity in particular) is not core work of the NHS. Indeed, it would be anathema to offer male and female genital surgeries for children for religious and cultural reasons . It is vital for patients to have individual plans made with trusted health professionals rather than be afraid that some helpful psychological interventions cannot be used.
- vi) Although this consultation is about young people under 18, NHSE needs to urgently consider the adult service transition pathway that continues the kind and level of care provided in child and adolescent services until age 25, which is when the brain reaches its full development, and decisions (say to forego long term sexual pleasure, fertility, or long-term health) can be made in a deliberative way. Adult services are likely currently replicating the failings of GIDS, particularly for the newer, younger demographic of females.
- vii) This guidance does not, and cannot, cover Scotland. This leaves gender questioning children and young people in Scotland at risk of harm and with an inferior service. It also leaves open the possibility of ‘medical tourism’ from England to private providers there. It is very important for NHS England and NHS Scotland to provide similarly authoritative, evidence-based services. We recommend that NHSE enjoins NHS Scotland to use the Scottish Intercollegiate Guideline Network (SIGN), similarly to NICE to advise them.
- viii) There is mention of psychoeducation and group therapy for children and young people “Parents, carers and families, (including siblings) will have the opportunity to access additional resources including facilitated group discussions with peers on a similar journey.”
We think care is needed in a group setting to avoid young people promoting unhealthy behaviours or unrealistic expectations to each other within or even outside of the group once they have met. Awareness of good practice in avoiding these pitfalls regarding group therapy for young people with eating disorders may be relevant here. There is also an evidence base around the differences between adult and adolescents regarding decision making. Key differences include the ability to weigh outcomes outside of ones’ direct experience, reactivity to potential rewards, tolerance for uncertainty and the ability to assess the value of an outcome and risks associated with it. Peer influence disproportionately affects decision making during the teenage years. This must all be taken into account in group settings for adolescents.
ix) Last, but not least, there is no mention of the needs of detransitioners in this interim service specification. It is important that a decision to desist or detransition is not hindered by withdrawal of therapeutic support if still needed. Ideally, detransitioners who need support would be sensitively and successfully managed within the same service to avoid splitting, and so the service can learn from those who regret. This needs to be provided in a way that is acceptable to those who regret or have decided to de-transition in order to prevent minimisation of regret.
7 To what extent do you agree that the Equality and Health Inequalities Impact Assessment reflects the potential impact on health inequalities which might arise as a result of the proposed changes?
We partially agree
(i) Regarding the protected characteristic of age in the Equality Act 2010 we think more attention should be applied to young people aged 17-25 who would benefit from a similar pathway.
(ii) With respect to the protected characteristic of sex, there has been far too little attention to systemic sexism, and the reproductive and sexual health needs of teenagers including risks of coercion. We note that if young people socially transition on the advice of the new Service, this will have an impact on other young people around them e.g. if a birth registered male uses female spaces. This will affect not only the protected characteristic of sex but also religion and belief as young people from religious communities will be disproportionately impacted by this.
(iii) With respect to the protected characteristic of sexual orientation, systemic and familial homophobia also needs to be considered (including that linked to religious beliefs).
(iv) We welcome the clarity that children referred to the Service do not share the protected characteristic of “gender reassignment” as a class. We think that such an assumption would be inappropriate as it could also lead to unwarranted conclusions regarding appropriate treatment.
(v) With respect to the protected characteristics of religion and belief, the new Service should be aware of the Forstater judgement and the protection of gender critical beliefs, including staff members and any family members of service users who have gender critical beliefs. As above in 7(ii), we note that if the Service advises a service user to socially transition, this will impact other young people around them such as those at the same school, including those with this protected characteristic.
(vi) We are concerned that NHSE and GIDS do not have data on race and ethnicity for service users already as this is standard practice across the NHS. We are glad that the Equality Impact Assessment notes here that the early adopter providers are required to take part in continuous data collection but it does not explicitly state that this lack of data on race and ethnicity will be fixed. We question the assumption in the Equality Impact Assessment that Black and Ethnic Minority groups are under-represented. This positions the White British population as the reference point. There may be cultural and social differences affecting vulnerability to ideas and pressures around the concept of gender identity – some groups may be more protected.
(vii) We agree with the Equality Impact Assessment that many service users will share the protected characteristic of disability through co-morbid conditions including mental health conditions and ASD. We welcome the attention paid in the service specification to address the needs of this group.
(vi) Outside of the Equality Act 2010 but considering those potentially vulnerable to substance misuse, we note that there can be a risk of addiction and dependence with mood altering medication and that concerns of this nature have been flagged with testosterone.
(vii) We note the comment within the Equality Impact Assessment that “a programme of work to develop the data strategy for adult Gender Dysphoria Clinics is currently underway within NHS England”. We think it essential that this data strategy collects accurate data including on biological sex and would welcome the opportunity to comment and advise on this project.