GIDS Archives - Mermaids

What is the Cass Review?

In 2020, NHS England launched an independent review of children and young people’s gender services in England, led by Dr Hilary Cass. The review had a massive scope, including:

What care trans youth received
How they get to and through the service
What medical options are available
How to staff services
How to explain the changes in demand for the service.

They also commissioned a set of research from the University of York.

Mermaids has regularly engaged with Dr Cass, most importantly through platforming trans children and young people’s views directly to the team through a series of focus groups. We have, however, been disappointed with the review’s consistent engagement with groups who deny the existence and legitimacy of trans youth.

What did the Interim Report say?

In 2022, Dr Cass produced her Interim Report. She wrote to trans youth saying “I think that more services are needed for you, closer to where you live”, and that success would be measured by “timely, appropriate and excellent care… from every healthcare professional they encounter”.

Mermaids supported the proposal to expand services across England’s regions, to better train healthcare professionals, and to build a consistent, holistic approach to healthcare (from GPs to specialised services).

However, we were concerned by parts of Dr Cass’ report, which fell into common misconceptions that gender-affirming care doesn’t allow space for open, supportive exploration.

The report also inferred that being trans could be caused by adverse childhood experiences, neurodiversity or sexual orientation, which we wholly reject.

Finally, her report was clear that preventing social transition is “not a neutral act”, but her words have been widely used by anti-trans activists to argue against trans youth’s self-expression.

While skeptical of the review’s approach, including the lack of trans people or experts in trans healthcare in the team, Mermaids conducted research with trans youth to ensure the Cass Review heard directly from them.

What do trans youth want?

Mermaids works directly with trans children and young people to listen to and platform their voices, with lack of adequate healthcare and support consistently their top concern. We held a series of focus groups specifically on the Cass Review, where trans youth told us they want:

Reasonable waiting times for a first appointment (currently at 6+ years)
Services which help people with their gender dysphoria, to grow confidence, and become more comfortable in themselves
Interact with accepting, supportive and respectful healthcare staff specifically trained in trans-inclusion, ideally including trans people themselves
Ensure neurodiversity doesn’t prevent support for transition
Any assessments should start from a point of respect, and feel less like being on trial
The process should involve asking the patient what they want out of the process, with a wider offer including voice training, laser treatment, and signposting to LGBTQIA+ youth groups
Services should feel welcoming, less clinical, and accessible for disabled people
Referrals into the service should be from a wide variety of sources, based on those the young person is most comfortable disclosing to – including schools, youth groups and family

What happens next?

NHS England did not wait for the Cass Review to conclude before making radical changes to the gender services offered in England for children and young people. The previous provider, GIDS, was closed last week, with two new services (much delayed) opening in the North and South, which will expand to 7-8 regional services.

These services operate under a new set approach (specification), which we fear over-medicalise and restrict care. They have also removed puberty blockers from routine prescribing, which will only be available through a research protocol in the future.

Following the final Cass Review, which is expected in the next few weeks, NHS England will review her recommendations and likely produce an updated set of policies and specifications in the coming year to reflect them.

We’ll be analysing the review closely when published, and will continue to advocate for the young people we support, pressing for timely, holistic and supportive healthcare for trans youth across the UK.

Mermaids’ policy team explains what the recently published guidelines mean for trans youth in England and Wales

NHS England has published guidelines for how the new Hubs replacing GIDS will deliver children and young people’s gender related healthcare, which will be updated based on the Cass Review’s final report.

While responses from Mermaids and supporters mitigated some of the most harmful proposals from the consultation, the final version continues to restrict, pathologise and undermine access to care.

These guidelines do not come into effect until the new Hubs open, and do not apply to current GIDS patients at this point.

Our main concerns are:

Waiting times: nobody will be taken off the ever-growing waiting list, now at almost 7,500 people, until the new Hubs are established. We believe this has been the case for many months, which is wholly unacceptable.
Access to puberty blockers: is to be restricted to only those with “early-onset gender dysphoria” as part of mandatory research.
Social Transition: despite improvements since the initial draft, the approach to social transition remains overly medicalised and unclear.
Private Providers: the guidelines still take a punitive approach to families using private providers to access gender-affirming care, unless under very specific circumstances.
Neurodivergent young people fear they will face additional barriers when seeking support.

An Analysis of the Specification

Waiting times

It is wholly unacceptable that the already excessive 3+ year wait for a first appointment has grown even longer in the period of chaos between announcing the closure of GIDS (July 2022) and the opening of new services later this year.

As of April 2023, there are 7,484 children and young people on the waiting list for a first appointment. GIDS has “ceased commencing new appointments” for the waiting list, which is “likely to remain in place until the new providers begin seeing new patients, planned later in 2023” (Equality and Health Impact Assessment p.19). We understand that few, if any, new appointments have been offered over the past six months.

Access to Puberty Blockers

NHS England has stated that puberty blockers will no longer be “routinely available” and only be prescribed as part of a research protocol.

The nature of this research will be decided by a newly established Oversight Board, which has, so far, only approved the development of a study into the use of puberty blockers for those described as experiencing “early-onset gender dysphoria”.

At no point has this term been defined, and a review of existing literature shows it is predominantly used by discredited researchers who have supported the roll back of transgender rights and anti-trans discrimination protections.

We are particularly concerned that “early-onset” is used alongside “rapid-onset gender dysphoria” in other academic literature, an offensive and debunked theory that argues the rise in young people coming out as trans is a “social contagion” rather than a result of growing societal acceptance.

International professional bodies specialising in gender-related healthcare disagree with the guidelines’ mandatory research enrolment, emphasising the evidence supporting the safe use of reversible puberty blockers. NHS England appears to be basing its approach on outdated and pathologising theories from gender-critical groups who reject the existence of trans childhood.

Not only is it deeply unethical to force young people into a research trial simply to access treatment but the restrictive criteria will compound inequalities by forcing families to use expensive private providers, and result in avoidable distress for trans youth.

Social Transition

The guidelines continue to highlight the supposed “risks” of social transition, however our campaigning has meant that NHS England will no longer require a formal diagnosis of gender dysphoria for clinicians to support socially transitioning. In fact, they state that “Social transition is something that should be led by the young person with family input”.

The approach to social transition for adolescents has been described as “informed consent” yet we feel the language in the specification continues to overly medicalise being trans, in stating that social transition should only happen where it is “necessary” for a young person’s social functioning. We think the choice should always lie solely with a young person.

For children, the guidelines remain out of step with the experiences of the children we work with, who find social transition to be deeply affirming. Changing your name or pronouns should not be a decision that requires approval or observation from medical professionals. Instead, it is the responsibility of our public services to end the “risk”, such as the stigma and discrimination that trans, non-binary and gender-diverse young people often face.

Use of Private Providers

Many families were worried by the initial specification which threatened to report parents to local safeguarding authorities if their young person was accessing healthcare through a private provider. It is positive that the NHS has listened to these concerns, and removed this. But the guidelines take an overly punitive approach to those accessing private care.

Our major concern is that if a young person is rejected under the restrictive eligibility criteria for blockers and/or gender-affirming hormones, clinicians are encouraged to suggest that a young person’s GP “considers what safeguarding protocols may be appropriate”.

Families access private care because they are desperate and have been failed by the long waiting times. They should be supported by the NHS rather than being reported to local safeguarding measures.

Neurodivergence

Many young people we work with highlighted the ableism present in the idea that their neurodivergence diminished, or “explained away” their trans identity.

While we welcome greater support for young people around their mental health and other aspects of neurodiversity, this should not create additional barriers for them to access gender-related care.

In particular, the requirement that clinicians explore the relationship between neurodivergence and gender identity remains a concern that could lead to yet more distressing and invalidating conversations, where neurodivergent patients feel their neurodivergence is framed as a “cause” of their gender identity, rather than existing alongside.

What’s next?

This specification will come into force when the new Hubs open, in autumn 2023 for the Southern Hub and April 2023 for the Northern Hub. NHS England will also be releasing further guidelines for public consultation on puberty blockers, the referral process, and gender-affirming hormones.

Mermaids is working hard to get more clarity and answers from NHS England and advice for experts in the field, and will share further information when we can.

You can support our work to advocate with and for trans young people and their families by signing up to our mailing list and joining a growing movement of people coming together to create a better world for trans young people.

If you find any of this distressing and would like some support, do call our helpline on 0808 801 0400. Our team are available Monday to Friday, 9am – 9pm.

Your Questions Answered: The new “interim service specification“

What does this specification do, and when does it start?

A service specification defines the standards of care for a service, in this case, the new Hubs replacing GIDS. This specification will only apply to the new services, which open in autumn 2023 (Southern Hub) and April 2024 (Northern Hub). It will apply until a final specification is made, following the Cass Review’s final report (date unknown).

Is NHS England stopping the prescription of puberty blockers?

Not entirely, but they will no longer routinely prescribe puberty blockers. Only those who are part of mandatory research will be eligible, which currently only includes those deemed to have “early-onset gender dysphoria”.

Who is eligible for the research protocol to be prescribed puberty blockers?

To our understanding, the only research proposed would be restricted to those deemed to have “early-onset gender dysphoria”.

What do they mean by “early onset gender dysphoria”?

We also do not know! The diagnostic criteria is unclear, and the term is largely used by anti-gender groups. Whereas the rest of the guidance uses the ICD-11 framework of gender incongruence or the DSM-5 criteria of gender dysphoria, this term is based on neither internationally-set standard.

What about current GIDS patients who access puberty blockers?

NHS England has previously said that the research protocol will not be applied retrospectively, so won’t affect those already prescribed puberty blockers. We have sought reconfirmation of this.

Will I be referred to local safeguarding measures if I need to access private care?

The guidelines no longer recommend that GPs refer families accessing private gender care (“unregulated medication”) to local safeguarding measures. However, they do still “suggest that the GP or local health professional considers what safeguarding protocols may be appropriate” (p.18) if a patient enters the NHS England pathway already on blockers or gender-affirming hormones, and is not accepted by the service to continue their care. There are various reasons why the service won’t accept continuation of care, listed on page 17, including if they’ve accessed gender-affirming hormones before approximately 16 years of age.

Do I need a diagnosis to socially transition?

No. The guidelines specifically stated that “social transition is something that should be led by the young person with family input”. However, the guidelines do say children and young people and their families will undergo “an in-depth process of discussion and thinking around the decision of social transition” if they “will present in public fully… in all forms and aspects of their daily lives” (p. 12-13).

I am accessing blockers or hormones from a private provider right now. What does this mean for me?

There is a possible pathway onto the NHS England services for those accessing private care (“unregulated sources and providers”), which is a welcome change. However, the patient must meet certain criteria (p. 17).

For blockers, they must stop using the medication for a brief period of time to assess a baseline, and be assessed by the service to meet the research requirement.

For gender-affirming hormones, they must have documented evidence of assessment, evidence of multi-disciplinary team support, not start before puberty, have used puberty blockers for 12 months prior, not start before 16 years of age, and have evidence that fertility was discussed.

What does this mean for neurodiverse people?

The new service will include people with expertise in the direct assessment of autism, ADHD and other forms of neurodiversity. While this could provide more holistic care and support, neurodivergent trans young people we work with worry that the assessment would focus on “fixing their neurodiversity” before supporting their gender incongruence/dysphoria.

Your Questions Answered: GIDS’ closure and new Hubs

In May, NHS England gave updates on the timeline for the Hubs replacing GIDS, which we have explained in another blog.

Has GIDS at Tavistock already closed?

NHS England announced in May 2023 that GIDS would remain open until at least April 2024, focusing on their open caseload (around 1,000 patients). They are not offering new appointments, although this could change.

When do the new Hubs start?

The Southern Hub (London-based) is due to open in autumn 2023, and the Northern Hub (Manchester/Liverpool) in April 2024. This was delayed from spring 2023.

Can people still be referred to a service right now?

Yes, people can still be referred to join the waiting list, which is now managed by NHS Arden and GEM. You can contact them at [email protected].

What about people still on the current waiting list?

The waiting list is now held with NHS Arden and GEM. Anyone referred to GIDS should have been transferred to them, and will be receiving a letter from NHS England shortly.

Is anyone being taken off the waiting list right now?

No. NHS England confirmed that “GIDS has ceased commencing new assessments” and this is “likely to remain in place until the new providers begin seeing new patients, planned later 2023”.

What about current patients?

GIDS will continue to support their current caseload. When the new services open, we understand that patients will be transferred to the appropriate service.

NHS England’s updates today gave much welcomed clarity on the current and future provision of youth gender health services, but we remain concerned about the ever-growing waiting times.

What has NHSE said?

“Following the further advice Dr Cass’ provided in July 2022, NHS England set out plans for how it would start building a more resilient service by expanding provision and enhancing the focus on quality in terms of clinical effectiveness, safety, and patient experience. These plans were welcomed and supported by the Tavistock and Portman NHS Foundation Trust.

The first phase in these plans is to establish two new nationally networked services which, consistent with Dr Cass’ advice, will be led by specialist children’s hospitals.

These Phase 1 service providers (previously referred to as Early Adopter Services), will take over clinical responsibility for seeing children and young people on the national waiting list as well as providing continuity of care for the GIDS open caseload at the point of transfer. The Tavistock GIDS service itself will be decommissioned as part of a managed transition of the service to the new Phase 1 service providers.

One service – The Southern Hub – is being formed through a partnership between Great Ormond Street Hospital, Evelina London Children’s Hospital (part of Guy’s and St Thomas’ NHS Foundation Trust) and South London and Maudsley NHS Foundation Trust.

The other service – The Northern Hub – is being formed through a partnership between Alder Hey Children’s NHS Foundation Trust and the Royal Manchester Children’s Hospital (part of Manchester University NHS Foundation Trust).

These new services will be commissioned against a new interim service specification. A final version of the interim service specification will be published later in May 2023. This follows on from a period of formal public consultation on a draft specification which generated over 5,000 responses which have had to be carefully considered.

A single national transformation programme has been overseeing all aspects of the work to establish and commission the new services. The initial ambition was for the new services to commence in spring 2023. However, the complexity of the programme, including the need to design, commission and implement a new service model rather than simply transfer the existing service model across to the new providers, as well as the need to recruit and train a new clinical workforce has required revisions to the timetable. It is now anticipated that the early stages of service provision at the Southern Hub will begin in autumn this year (2023) – with the Northern Hub mobilising by April 2024.

During 2023/24 the GIDS at Tavistock will focus on providing continuity of care for their open caseload of around 1,000 patients. Continuing workforce capacity constraints within the GIDS, combined with the need to provide ongoing care for the large open caseload means that the Tavistock is currently not offering any new first assessment appointments. This will be kept under review but may remain the position until the Hubs begin seeing new patients. While this situation may be frustrating, particularly for young people who are towards the top of the waiting list, this is a temporary arrangement. The hubs will contact patients ahead of the services opening and as soon as practical, with offers of appointment dates.

In the meantime, the GIDS team will continue to work with all partners to consider how best to support patients whilst they wait to be assessed. Additionally, NHS England has commissioned new on-line support resources and materials for families of children and young people with gender incongruence and for professionals, and these will be made available in June.

To support the transition of service provision to the new providers, responsibility for managing the GIDS waiting list has now transferred completely from the Tavistock to NHS England, who now holds a single national waiting list from which the new providers will see children and young people. NHS Arden and GEM Commissioning Support Unit (CSU) is supporting NHS England in managing the national waiting list and has been supporting the Tavistock GIDS in managing the waiting list since August 2021. With a single national waiting list in place, NHS England will now write to all children and young people to confirm that we have their referral information, asking them to update this information where needed and to let them know what they can expect to happen next.

Placing the management of the waiting list with the CSU, has a number of advantages, including the ability to transfer children and young people from the waiting list to new providers in a managed way as the new services initially begin seeing patients and then as they ramp up capacity. The CSU will work with children, young people and their families to ensure that the information held is up to date to prevent delays in starting assessments.

A single waiting list has also enabled NHS England to begin to directly address some of the historical challenges in the pathway that have delayed or prevented children and young people progressing through a clinical pathway, such as the cohort of young adults aged 17 and over for whom a transfer to adult gender dysphoria services or to alternative local services has not happened. NHS England has also directly commissioned a specially convened multi-disciplinary team of children and young people’s mental health professionals and gender dysphoria specialists to jointly review referral information held in individual referral notes to identify cases where children or young people may benefit from additional local support while on the waiting list. In such cases the MDT is contacting GPs and local professionals to provide advice on appropriate sources of support.”

What does this mean?

The past 10 months have left young people and families distressed about their future or continued care, following the premature announcement of the closure of GIDS in “Spring 2023” to be replaced by two Phase 1 services, or Hubs. This has clearly not happened.

NHSE’s update clarifies that:

GIDS will remain open into 2024, continuing to provide care to current patients
The Southern Hub of new services will open in Autumn 2023, seeing patients from the waiting list
The Northern Hub of new services will open in April 2024
Additional support will be provided for people on the 3+ year waiting list (via referrals to local support and online resources) in June 2023
The interim service specification (how the new Hubs will run), following last year’s public consultation, will be released at the end of May 2023

Kai O’Doherty, Head of Policy at Mermaids, said: “Mermaids welcomes clarity from NHS England on the current and future gender healthcare of young people in England, including the continued care for current patients at GIDS, and future services opening late 2023 and 2024.

“The growth of the 3+ year waiting list remains a core concern for the young people we work with, however, and it is not good enough that no one will be taken off this list until later this year. Trans young people deserve better.”

What happens next?

In addition to the new services opening, and an interim specification being finalised, the Cass Review’s work is continuing. This includes a set of research work they commissioned, and ultimately Dr Cass’ final report. This report will inform the new services, and the future Hubs planned in the future.

If you have any concerns about what this latest announcement means for you and would like to talk to someone, contact our helpline on 0808 801 0400. We’re here for you Monday to Friday, 9am-9pm.

A paediatric doctor and parent of a trans child shares her view on the future of healthcare for gender diverse young people in England.

I have been a paediatric doctor for 10 years. I also have a primary-school age transgender child.

When my child first raised questions about their gender identity (“Mum, how do people know if they are a girl or a boy? Because I think I’m a boy”) I went looking for evidence to help me decide how to respond.

After about six months of being supportive and non-judgemental while they continued to express their questions, my child asked to change their name and pronouns, haircut and clothes to reflect their male gender identity.

Following a further few months of making these changes at home, he made a full social transition at school and all other areas of his life, which was straightforward and joyful. I am confident that this is right for him now and in the future, however his exploration of gender identity turns out.

As an academic health professional I was dismayed to read the recommendations on social transition for pre-pubertal children in the NHS England commissioning documents that are currently out for consultation.

The document states that in most cases “gender incongruence does not persist into adolescence” and that we should be “mindful of the risks of an inappropriate gender transition and the difficulties that the child may experience in returning to the original gender role upon entering puberty” – discouraging a social expression of the child’s gender identity.

What is really shocking to me is that the specification ignores a whole body of evidence that has been published in the last five years which directly contradicts their recommendation.

The specification relies on one source to support their claim about the low likelihood of “persistence” of transgender identity, the Endocrine Society guideline published in 2017. The evidence base indirectly cited in this guideline is made up of small and low-quality studies, including material published as far back as 1967 with titles including “the cissy boy syndrome”, focused on how to prevent homosexuality.

However in 2022, we have evidence reporting the gender journeys of larger and more relevant cohorts of kids. One study found that 97.5% of socially transitioned North American kids (first assessed around eight years of age) retained a transgender identity at adolescence and after an average of five years follow-up.

Another study showed that even among the kids who “retransitioned”, social transition was primarily a positive experience, for example strengthening parent-child relationships through the demonstration of respect for the child’s chosen path.

We also now have evidence that the mental health of the teens who had been socially transitioned since childhood was similar to cisgender teens, especially important considering the poor mental health outcomes of transgender teens in non-affirmative settings.

When making decisions on how to respond to my own child’s request for social transition, this was the most important factor I considered – how can I maximise and protect their mental health right now AND if their transgender identity is persistent? In my mind the answer is loud and clear – listen, trust, respect and affirm their expressed identity.

Put simply, I could not parent my child in a respectful and loving way while simultaneously ignoring their expressions of gender identity.

My child is incredibly happy in their social context and confident that their family and social community support them. They have learnt so much about themselves and felt empowered to form new friendships – things that will be of long-lasting value whatever they decide in the future.

All parents want to do the best for their child and will look to the NHS for guidance. This specification must change to more accurately reflect the evidence in order to avoid further harm to our kids.

The consultation for the proposed specification runs until 4 December 2022. Mermaids has produced guidance to help you respond.

Two young trans people share their views on proposed changes to NHS healthcare services for trans and gender-diverse young people in England

We continue our series of blogs from our communities on the impact of the proposed guidelines with two young trans people, Jamie and Elijah, who have shared their views on the specification.

The consultation on the proposed guidelines runs until 4 December 2022, and we have produced guidance on the consultation to help you respond.

Jamie: “Social transition – it’s a lifesaver”

Social transition saved me as a teenager.

To some, it may seem unbelievable how such simple acts can have such a profound effect on someone’s life. For me, cutting my hair short started the long journey of being able to look myself in the mirror once more.

The new proposals argue for clinicians not to encourage social transition until a diagnosis of gender dysphoria has been made, citing Dr Hilary Cass’ statement that social transition is “not a neutral act” and fears over its long-term psychological impact.

To me, this is a huge step back in trans advocacy and self-determination. A clinical diagnosis to be permitted to cut your own hair short may seem preposterous. And that’s because it is!

All individuals, trans or cis, go through a journey of self-discovery through their lives. Finding what it means to be authentically you is something inherent to the human experience, and it’s only once this authenticity is placed into a transgender context that it’s seen as something to be wary over, something to be medicalised.

When I changed my name to a nickname, this was in a cis context, and thus was permissible, even encouraged. When I changed my name to what it is today, I was told to “think about my future”, and consider whether this was a “permanent” change that I really wanted. Silly considering how easy changing your name is here!

The new proposals will undoubtedly cause harm to trans youth. Dr Cass was right, social transition isn’t neutral. It’s a lifesaver.

Elijah: “a worrying outlook for what is to come for gender-diverse young people”

Holistic support is undoubtedly key for the well-being of young trans people and to make them feel supported there is a need for honesty and openness in communication from both sides.

While young people using unregulated sources of medication is a concern, an approach that attempts to persecute the young person and their support system does nothing to reduce harm.

The proposed guidelines state that safeguarding protocols will be initiated if a young person seeks medication outside the NHS which will make it difficult for young people to build trust with workers involved in their care.

The attitude towards social transition within the report is also concerning, painting it to be a process that requires medical approval rather than a gradual process of presenting in a way that makes you feel most comfortable. Young people know themselves better than a clinician who they only see once every few months.

I think it is ironic that while some claim that “allowing” children to be trans is depriving them of their childhood, in reality, the restrictions placed on trans young people create an environment where they are filled with fear, unable to simply enjoy their youth.

Community support has been crucial in being able to manage the complex and overwhelmingly negative feelings I felt in relation to this consultation and has reaffirmed the importance of specific services for trans young people such as Mermaids.

Although the specification seems to provide a worrying outlook for what is to come for gender-diverse young people in the UK, there is still hope and solidarity within the community, and we will push even harder for progress.

Read more about the proposed changes in our explainer blog, and find guidance to help you respond here.

“It sounds like they are trying to stop trans youth existing”

This month, we published a blog summarising some of the proposed changes to the NHS healthcare services for young trans and gender-diverse people in England.

The new guidelines were met with anger and frustration by the young people and families we support, with those on our helplines and forums expressing deep concern about the implications to their future wellbeing.

In response, we held two online engagement sessions, one for trans and gender-diverse young people, and one for parents to listen to their views.

What struck us most was the message that, in their current form, the proposals categorically fail our communities. Participants strongly felt that NHS England appears committed to denying trans young people the right to be their authentic selves.

“Literally everyone transforms themselves socially in some way or another”: The right to socially transition

Under the new guidelines, clinicians are now advised to only consider supporting “social transition” – i.e. changing name, pronouns, clothing – if a young person experiences what is described as “clinically significant distress“.

There was shock amongst young people at this inclusion within the guidelines, who felt this is reflective of efforts to “medicalise” trans people. In other words, it opens up the possibility that a person will require permission from a doctor to dress how they please, and use their chosen name and pronouns.

As one young person remarked, social transition is “a thing that people should be allowed to do freely because people, even children, have bodily autonomy.”

Both parents and young people recognised the enormous benefits that social transition can bring to a child’s mental well-being, so far as to be life-saving for some.

There was bewilderment that someone could only access support if they reached the point of showing “significant” distress. “Why would they want young people to get to that point?” one young participant observed.

Rather than uplift and support trans youth, our participants felt the proposed changes deny them the right to express themselves as they choose – something one parent suggested could be seen as “conversion therapy”.

“I don’t think it’s about increasing the capacity to help more people”: The right to access care

Currently, young people can be waiting over three years to just have a first appointment with gender services.

Everyone we heard from felt it is a priority to urgently reduce the waiting lists but there was concern that the guidelines would create additional barriers and delays to care.

Under the proposals, a young person can only be referred to gender clinics via their GPs or NHS professionals. Both young people and parents shared negative stories from local doctors, with some having to deal with GPs with no knowledge of trans healthcare, while others had experienced outright hostility.

The requirement for an additional assessment stage before joining the waiting list will not only create further delays, but also risks retraumatising young people seeking healthcare.

One young person mentioned that the “whole process is a hoop-jumping and emotionally taxing exercise which is inevitably going to be a problem for those with additional needs” such as those who are neurodiverse.

This view was echoed by a parent who told us how her child had “already had to speak to 10 or 12 people” about their body. “Why should I force my child to traumatise themselves just to get medication?”

“Not acting is not neutral: hearing your children saying I am, you know, whatever gender they are, and doing nothing, that’s where you need to go to social services”: The right to be heard

These excessive delays and barriers are leading families, who can afford it, to seek out private healthcare for their young person.

The proposals encourage a GP to make a local safeguarding referral if a young person accesses medications through a private provider, putting families in the unenviable position of choosing between either listening to what their child wants and needs through private care, or being unable to access vital support from their GP.

Far from reducing possible harm to trans young people, the guidelines are a dereliction of the duty of care towards an already marginalised community.

Both young people and parents were very clear that the proposed changes reflect a complete lack of understanding of the experiences of trans people and those who support them. “If you are trans, or you have a loved trans person in your family, you get it. But if you don’t, you don’t. And that’s the problem” one parent told us.

We asked our young people if they could encourage the NHS to change one thing, what it be. “We know ourselves better than you ever will” was one response.

It’s time we started listening to, trusting and believing trans and gender-diverse young people and their supportive families, placing their needs front and centre in the design of new healthcare services.

These proposals are not final and we have produced guidance to help those wishing to take part in the consultation.

Regardless of the outcome, Mermaids will continue to campaign for a world where trans young people can thrive in every aspect of their lives.

If you have found any of this information distressing and would like some support, call our helpline on 0808 801 0400.

NHS England has launched a consultation running from 20 October to 4 December on how the future youth gender services should run in the new clinics opening in Spring 2023.

We have significant concerns about these proposals, which you can read about in our explainer blog, and in collaboration with Stonewall, Gendered Intelligence and Trans Learning Partnership, have now published guidance to help with your response.

The guidance takes you through the questions as they are on the response form, with key issues you may wish to raise in bullet points. We’ve also highlighted relevant research, as well as differences between this new specification and the previous specification where useful.

You can respond to the consultation via an online survey on the NHS England website any time before 4 December 2022.

Guidance for consultation responses: Interim service specification for specialist gender dysphoria services for children and young people in England (Phase 1 services)

Already completed the consultation? Great! Let us know you’ve done so by completing this form.

A content note: these proposals may make for heavy reading for those accessing, or hoping to access, children and young people’s gender services in England. Take care while reading.

NHS England has launched a consultation running from 20 October to 4 December on how the future gender services should run in the new clinics opening in Spring 2023.

Mermaids has significant concerns about these proposals, which will likely add more barriers to accessing care. They suggest that young people should be prevented from exploring social transition (e.g changing name or pronouns) unless diagnosed with “clinically significant distress”, and that young people seeking gender-affirming treatment outside of the NHS (e.g. private clinics) could be seen as at risk or a safeguarding concern.

We will be publishing advice on how to respond to the consultation shortly, but wanted to explain some of what’s going on first. There are still many unanswered questions, but we have tried to break down what we know so far.

What is the consultation about?

Last week, NHS England released proposed guidelines for trans and gender diverse young people who require gender health services. Known as a “service specification”, it is essentially a guidance manual on how gender services are expected to run.

The guidelines are “interim” which means that they will only be used for a limited time until a new, more permanent “service specification” is formed after The Cass Review concludes.

NHS England is running a consultation on these interim guidelines meaning the public and relevant organisations, like Mermaids, can provide feedback about what they like, and what they think needs to change.

Why now?

Earlier this year, NHS England announced that NHS Tavistock and Portman’s Gender Identity Development Service (GIDS), England’s sole provider of gender health services for children and young people, is being replaced in Spring 2023.

This followed recommendations made in February by Dr Hilary Cass, who has been given the job by the NHS of reviewing the current healthcare options available to gender-diverse youth.

In her interim (i.e. not final) report, Dr Cass identified that young people were experiencing extremely long waiting times to access gender health services and that the existing model was unsustainable.

Dr Cass then wrote to NHS England in July to recommend GIDS be replaced by multiple new regional hubs, which started this process.

What changes are proposed?

Two new clinics will be established – one in London and one in the North West of England, as part of a pilot. Existing patients or those on the waiting list for GIDS will be transferred to these services.
The introduction of yet another stage before even joining the waiting list. This will be between the new service and the professional who referred the young person (e.g. a GP) to determine whether they meet the criteria for a referral to the service. Even those who meet the criteria might not be added to the waiting list. The document says local professionals will be able to provide alternative support.
Currently, the long waiting times mean many families seek private providers to access the healthcare required by a young person. If they do, the new service will not take on any clinical responsibility for monitoring these patients (this is currently the case), and will also encourage the patient’s GP to “initiate local safeguarding protocols” (e.g. referral to the local authority’s social care department). Noting that supporting your child’s gender exploration with private clinical support is not a safeguarding issue, the claim here is tenuous at best.
When a young person is taken on by the service, clinicians are now advised to only consider supporting “social transition” – i.e. changing name, pronouns, clothing – if they experience what is described as “clinically significant distress“.
The guidelines continue to allow for young people to be prescribed “puberty blockers” – which pause puberty giving time for a young person to explore their options. However, they will be required to take part in research as they grow up to become adults.

What do we think of it?

While an additional clinic should add capacity to an overstretched service, we are concerned that proposals will increase the barriers to care, and treats being trans as an illness, rather than an expression of someone’s authentic self which might require additional support. There are also many unanswered questions on how this would work in practice.

The introduction of an assessment prior to joining the waiting list will add further delays to a service already unable to meet the level of need. Among those young people able to access healthcare through a private provider, the guidelines will deter families from speaking with their GPs and accessing any NHS service, denying them the care they need (e.g. blood tests and general health).

For many young people, social transition is a vital way to preserve their mental wellbeing and be their authentic selves – it shouldn’t require medical approval.

International best practice states that “recognition that a child’s gender may be fluid and develop over time… is not sufficient justification to negate or deter social transition” (World Professional Association for Transgender Health (WPATH) Standards of Care (SOC8, 2022) Available at: Standards of Care for the Health of Transgender and Gender Diverse People, Version 8 (tandfonline.com), p. S75). This section clearly supports anti-trans views and could create fear and misinformation in various areas of life.

There are other more specific areas of concern which we will expand on in our consultation response guidance.

What’s next?

Despite our concerns, it is important to state these proposals are not finalised, and must take consultation responses into account.

We would expect these interim guidelines to be published in the new year, and GIDS at the Tavistock and Portman Clinic will continue to operate as usual in the meantime.

There will be further opportunities to make our concerns known ahead of the publication of the final, more permanent guidelines following the conclusion of the Cass Review.

We would encourage those concerned about these changes to respond to the consultation, which we will be publishing advice on soon.

No matter the outcome of this service review, Mermaids will continue to support trans and gender diverse young people and their families to access the healthcare and support they need to live the happy and fulfilling lives that they deserve.

If you find this news distressing and would like some support, do call our helpline on 0808 801 0400.

This blog post is now out of date. Please see this link for the latest information.

We welcome today’s High Court Family Division ruling that parents can consent to their children being prescribed puberty blockers without needing to go to court, and that puberty blockers are not a special category of treatment which has to be authorised by a court order. This is welcome news for those fearing the Keira Bell ruling would prevent them from accessing ‘puberty blockers’.

“We feel a huge amount of relief having heard this news. My youngest is 12 and we were told just before Christmas that she would have access to blockers after a 6-year-wait, only to have that taken away. It was so cruel. We sat in tears after the Keira Bell ruling. The thought of putting my child through a court case to get access to thinking time with puberty blockers was so concerning.” – Sarah, mother of a 12-year-old trans girl.

In the wake of the Bell judgment, this decision carves out a way for under 16s with supportive parents to access vital medical intervention. Up to now, GIDS have only used a child consent pathway in relation to accessing puberty blockers, which was effectively blocked by the Bell v Tavistock decision (which ruled that children were not legally able to consent to puberty blocking treatment for themselves). Today’s court ruling establishes that, even if children cannot give legal consent, their parents can do so on their behalf. We’ve heard first-hand the confusion and distress the Bell decision has caused and we know the relief this will bring many families around the country.

To be clear, the court has decided that there is no obligation for families or clinicians to apply to court to authorise the prescription of puberty blockers, if parents or carers have given legally valid consent to treatment. As with any other medical treatment, that is the case unless there is a dispute between parents or a concern by the clinician that the parents are not able to give free and informed consent themselves. This will only affect a tiny minority of cases.

“It’s a really good outcome. It’s reinforcing the right to bodily autonomy. Trans young people are having their rights completely ignored. I’ll be watching closely to see what NHS England does to update its guidance so it reflects the latest legal judgment.” – Parent of a 15-year-old trans young person.

CALLING FOR ACTION FROM NHS ENGLAND

We hope to see this court ruling promptly reflected in updated NHSE guidance.

The Court has confirmed that the administration of puberty blockers is lawful without a best interests court order (as long as there is parental consent). Importantly, this judgment will only have an impact on access to puberty blockers in practice once the NHS has changed its Service Specification to reflect what has now been confirmed to be the correct legal position.

“I’m so happy with the outcome today. It is right that I am able to make decisions about my body and my healthcare. It’s my life, my body and my choice.” – Ashlynn, 15

We now call on NHS England to immediately revise its guidance to reflect that there is no need for a best interests court order in cases where there is parental consent (irrespective of the outcome of the forthcoming hearing in the Court of Appeal aimed at overturning the Bell decision on the child’s capacity to consent).

As a result of today’s ruling there is no legal reason why clinically-recommended treatment should not proceed on the NHS in cases where parents consent and we look forward to updated guidance which brings the NHSE’s guidance in line with this.

“This is a huge relief because our daughter is 16 in June and this means her rights and our rights are still recognised. I could have cried when I saw the judgment and it gives me hope that NHS England will change their guidance straight away.’ – London, father of a 16-year-old trans young person

Mermaids believes in the right to timely and accessible healthcare for all young people. We also believe in the value of bodily autonomy. These values must not be applied differently because someone is transgender. At the core of this judgment is a ruling that puberty blocking treatment should not be treated any differently to any other form of medical treatment for children, where informed parents routinely make complex decisions on behalf of their children. We see this judgement as an important step in the right direction, but more must be done to ensure that transgender children are able to access healthcare.

“I’m lost for words, it’s just a fair decision and places the decision here around those who know the child best: the child themselves, the clinicians and the family. If we’re all in agreement, the courts aren’t necessary so we’re delighted and hope NHSE will follow the ruling with their guidance.” – Mum of 12-year-old daughter

FAQs

What has the AB and CD case decided?

The High Court has confirmed that parental consent is valid in relation to the administration of ‘puberty blockers’. The court has also confirmed that if there is parental consent then there is no obligation to apply for court authorisation unless there is a concern by the clinician that the parent(s) are under too much pressure from the child to consent to treatment or if the clinician has some ethical concerns in relation to the provision of treatment. We anticipate that this will only affect a tiny minority of cases.

How does this relate to the Bell v Tavistock case?

The Bell v Tavistock case concerned identifying the circumstances in which a child was competent as a matter of law to give valid consent to treatment. The Bell case did not answer whether parents as a matter of law could consent on behalf of their children – the AB and CD case was asking the court to answer this. This case therefore is related to Bell, but distinct.

What does this mean for families?

We will be contacting NHSE to ask if it will be updating the Service Specification further to the decision and specifically asking NHSE to reflect the decision through an introduction of an alternative parental consent pathway at GIDS. The High court has made clear that this approach is a lawful approach to consent.

If NHSE changes its approach to consent in light of this case, logic follows that young people clinically recommended for puberty blockers, with parental support would be able to access puberty blockers without the need to apply to court for approval.
GIDS have updated its website with the following Guidance.