NHS England » Referral pathway for Children and Young People’s Gender Services

Purpose

This document provides community and hospital paediatric services with guidance on:

supporting a child or young person (up to their 18th birthday) and their family who are concerned about their gender identity and who may be seeking a referral to the specialist NHS Children and Young People’s (CYP) Gender Service
support resources that are available to you

Note: Parallel guidance has been provided to CYP mental health services and accompanies this guidance.

Key messages

From 1 September 2024, referrals to the specialist NHS CYP Gender Service must be made through one of:
- NHS Community and Hospital Paediatric Services
- NHS CYP Mental Health (CYPMH) Teams
You are not being asked to change your access criteria, and you are not being asked to work beyond your existing competencies; but to use, as appropriate, your experience and generalisable skills.
- Paediatricians are not expected to provide mental health and wellbeing support beyond their usual remit; but to refer or signpost to relevant local mental health or wider wellbeing services as appropriate.
Children and young people who are referred for gender incongruence or gender dysphoria show significantly higher than expected levels of:
- autism spectrum disorder
- attention deficit hyperactivity disorder (ADHD)
- anxiety
- depression
- eating disorders
- suicidality
- self-harm
- adverse childhood experiences
  (as described in the final report of the Cass Review)
For children and young people with significant features of gender incongruence, including persistent questioning or distress, your service is asked to refer and co-ordinate onward care, where indicated, to the NHS CYP Gender Service (see below) following local assessment and allocation or referral to appropriate interventions, including CYPMH or local wellbeing and support services.
Your service is not expected to diagnose gender incongruence, or to form an individual care plan for this aspect of care.
Private prescribing/self- medicating with puberty blockers is now unlawful as an outcome of recent emergency legislation.
- A best interest assessment should be made for children and young people who have self-medicated with puberty blockers prescribed by UK private prescribers or non-UK registered prescribers, including those in the European Economic Area (EEA) or Switzerland.
- The legislation allows NHS prescribers to continue prescribing for these patients if they feel competent.
- The legislation is extended until Tuesday 26 November 2024 while the government consults on a proposal to make the legislation permanent.
This guidance will be reviewed early in 2025 to reflect learning from the operation of the new referral pathway, and as part of potential revisions to ensure full alignment with NHS England’s service specification and the Cass Review.

Young people aged 16 and above

Where hospital and community paediatric health services normally cease at 16 years of age, they are requested to extend services and practice to include provision for the small number of 16/17 year-olds without mental health needs (and so will not access CYPMH services), who are gender querying or experiencing gender incongruence.

There are existing precedents for this approach: for example, NHS paediatric services that see young people aged 16 and above for long-Covid. In some areas multidisciplinary triage/liaison arrangements may facilitate the approach.

Local actions and expectations following referral

Where a referral is made to the NHS CYP Gender Service, your service is asked to continue providing support where appropriate to the child or young person while they remain on the waiting list (see checklist below), working with the GP and local health and multi-agency network in the usual way.

Clinical responsibility will remain with the referrer until the NHS CYP Gender Service accepts responsibility for the referral from the NHS National Referral Support Service and commences direct assessment and intervention; at which point, clinical responsibilities will be apportioned as part of a collaborative care agreement.

In the context of the current very long waiting list, it may be appropriate in some cases to discharge to primary care where, following assessment and referral, there are no other needs or concerns.

However, the child or young person and their family (and GP) should be given explicit written instructions on how to request a prompt review or/and access to urgent mental health support if their presentation changes.

Such a protocol should be agreed across the services concerned.

Making a referral to the NHS CYP Gender Service

Referrals are made through a National Referral Support Service for the CYP Gender Service. Details of the referral pathway and electronic form to make the referral is available from the Arden and Greater East Midlands (GEM) Commissioning Support Unit (CSU) website:

National Referral Support Service for The NHS Gender Incongruence Service for Children and Young People – NHS Arden & GEM CSU (ardengemcsu.nhs.uk)

The National Referral Support Service will use the date of referral to your service for the purpose of determining the child or young person’s position on the national waiting list for the NHS CYP Gender Service.

Although waiting times into the NHS CYP Gender Service are long because of constrained capacity (around 3 years), you should proceed with making your referral even if there is reason to conclude that your patient will have reached the age of 18 years before being seen by the NHS CYP Gender Service.

This is because additional capacity is now being built by the NHS with an ambition of having a specialist service established in every NHS region by 2026, and because there are arrangements in place for the National Referral Support Service to contact an individual as they approach their 18th birthday and advise them to discuss with their GP whether a referral to an adult gender service is appropriate.

As an exception to this principle, and as an interim measure while additional capacity is built over time, you should consider whether a referral directly to an adult gender service is appropriate where your patient has reached the age of 17 years and 9 months.

Checklist for Community and Hospital Paediatric Services	Commentary
Does the child or young person meet the referral threshold for your service?	Children and young people (CYP) who present with gender incongruence are likely to meet the referral threshold in view of the incidence of co-occurring: ADHD; autism; social, emotional and mental health needs. Although the current national waiting list is substantial, the rate of new referrals to national CYP Gender Services in each local service area reflects just 3-4 per month per integrated care board. Many CYP will have significant co-existing mental health conditions and will already have been referred to CYPMH services. Consider also consultation or liaison with local CYPMH service.
Offer assessment in the usual way. Appointments are held with the child or young person and family members in accordance with your service’s established operating protocol.	You are not asked to act beyond your competence, and you are not expected to diagnose gender dysphoria or gender incongruence. Where mental health or neurodiversity needs are identified, CYP should be referred to the appropriate pathway or service.
Through a process of assessment and risk assessment, confirm primary diagnoses or conditions and identify support needs for the child or young person and their family through a documented individual care plan. – Assessment of health needs and risks – Review and assessment of potential neurodevelopmental needs – Review of any additional health concerns – Identification of wider psychosocial concerns – Identification of any safeguarding concerns	Safeguarding concerns should be identified and addressed locally with trust safeguarding leads and/or wider safeguarding services where required. See Appendix A regarding CYP who source endocrine medication from unregulated sources. CYP and their parents/carers should always receive a separate interview as part of the assessment and referral process so that the young person’s voice is heard. Include local multi-agency support services from education, local authority social care and wellbeing services as appropriate
Determine whether the child or young person meets the criteria for a referral to the NHS Children and Young People’s Gender Service. Criteria to consider include: – Is there evidence of marked incongruence between an individual’s experienced/ expressed gender and their assigned sex at birth – with persistent – and outward expression of gender querying or distress? You are not expected to make a primary diagnosis of Gender Incongruence; but see Appendix B for ICD-11 criteria to consider.	Whether or not there are significant features of gender incongruence, determine whether there are other ongoing healthcare needs that require intervention from your service; if there are not, advise the family or young person of other resources for support, as appropriate. A child or young person who may have a neuro-developmental condition should receive an appropriate local assessment or be referred into the appropriate local pathway for assessment. Where waiting times for local specialised assessments are lengthy, you should make a clinical determination as to whether a referral to the NHS CYP Gender Service should be made prior to (or concurrently with) such an assessment being completed, recognising that the CYP Gender Services will prioritise according to the date of referral into your service.
If the criteria are met, obtain informed consent for a referral to the NHS CYP Gender Service	Make a referral to the NHS CYP Gender Service via the National Referral Support Service using the standard electronic form at the NHS Arden & GEMCSU website.
Usual good practice would indicate that CYP referred to tertiary services would not be discharged or closed in advance of being seen by the specialist CYP Gender Service. Local secondary care referrers would act as a point of contact and review and monitor health risks even in cases where the child or young person does not present with additional health needs that require direct intervention by the service. However, it may be appropriate to discharge to primary care CYP where there are no active concerns.	Clinical responsibility will remain with local services until the NHS CYP Gender Service accepts responsibility for the referral from the National Referral Support Service and commences direct assessment and intervention. Where the child or young person has been discharged following referral to CYP Gender Services, they and their family (and GP) should be given explicit, written instructions on how to request a prompt review or/and access to urgent mental health support. Such a protocol should be agreed across the services concerned. Local paediatric and CYPMH services may build on or develop multi-disciplinary triage/liaison arrangements to facilitate a local approach. Where CYP have been discharged from the local service following referral to the CYP Gender Service, the latter will contact the referring secondary care service to provide or/and co-ordinate local care in the usual way as part of a collaborative care plan.
Determine if CYP have been prescribed puberty suppressing hormones by UK private prescribers or non-UK registered prescribers, including those in the EEA or Switzerland.	Make a best interest assessment on whether to continue prescribing as permitted by emergency legislation, (which is now extended until Tuesday 26 November 2024).

Checklist for Community and Hospital Paediatric Services

Commentary

Does the child or young person meet the referral threshold for your service?

Children and young people (CYP) who present with gender incongruence are likely to meet the referral threshold in view of the incidence of co-occurring: ADHD; autism; social, emotional and mental health needs.

Although the current national waiting list is substantial, the rate of new referrals to national CYP Gender Services in each local service area reflects just 3-4 per month per integrated care board.

Many CYP will have significant co-existing mental health conditions and will already have been referred to CYPMH services.

Consider also consultation or liaison with local CYPMH service.

Offer assessment in the usual way.

Appointments are held with the child or young person and family members in accordance with your service’s established operating protocol.

You are not asked to act beyond your competence, and you are not expected to diagnose gender dysphoria or gender incongruence.

Where mental health or neurodiversity needs are identified, CYP should be referred to the appropriate pathway or service.

Through a process of assessment and risk assessment, confirm primary diagnoses or conditions and identify support needs for the child or young person and their family through a documented individual care plan.

– Assessment of health needs and risks

– Review and assessment of potential neurodevelopmental needs

– Review of any additional health concerns

– Identification of wider psychosocial concerns

– Identification of any safeguarding concerns

Safeguarding concerns should be identified and addressed locally with trust safeguarding leads and/or wider safeguarding services where required.

See Appendix A regarding CYP who source endocrine medication from unregulated sources.

CYP and their parents/carers should always receive a separate interview as part of the assessment and referral process so that the young person’s voice is heard.

Include local multi-agency support services from education, local authority social care and wellbeing services as appropriate

Determine whether the child or young person meets the criteria for a referral to the NHS Children and Young People’s Gender Service.

Criteria to consider include:

– Is there evidence of marked incongruence between an individual’s experienced/ expressed gender and their assigned sex at birth

– with persistent

– and outward expression of gender querying or distress?

You are not expected to make a primary diagnosis of Gender Incongruence; but see Appendix B for ICD-11 criteria to consider.

Whether or not there are significant features of gender incongruence, determine whether there are other ongoing healthcare needs that require intervention from your service; if there are not, advise the family or young person of other resources for support, as appropriate.

A child or young person who may have a neuro-developmental condition should receive an appropriate local assessment or be referred into the appropriate local pathway for assessment.

Where waiting times for local specialised assessments are lengthy, you should make a clinical determination as to whether a referral to the NHS CYP Gender Service should be made prior to (or concurrently with) such an assessment being completed, recognising that the CYP Gender Services will prioritise according to the date of referral into your service.

If the criteria are met, obtain informed consent for a referral to the NHS CYP Gender Service

Make a referral to the NHS CYP Gender Service via the National Referral Support Service using the standard electronic form at the NHS Arden & GEMCSU website.

Usual good practice would indicate that CYP referred to tertiary services would not be discharged or closed in advance of being seen by the specialist CYP Gender Service.

Local secondary care referrers would act as a point of contact and review and monitor health risks even in cases where the child or young person does not present with additional health needs that require direct intervention by the service.

However, it may be appropriate to discharge to primary care CYP where there are no active concerns.

Clinical responsibility will remain with local services until the NHS CYP Gender Service accepts responsibility for the referral from the National Referral Support Service and commences direct assessment and intervention.

Where the child or young person has been discharged following referral to CYP Gender Services, they and their family (and GP) should be given explicit, written instructions on how to request a prompt review or/and access to urgent mental health support. Such a protocol should be agreed across the services concerned.

Local paediatric and CYPMH services may build on or develop multi-disciplinary triage/liaison arrangements to facilitate a local approach.

Where CYP have been discharged from the local service following referral to the CYP Gender Service, the latter will contact the referring secondary care service to provide or/and co-ordinate local care in the usual way as part of a collaborative care plan.

Determine if CYP have been prescribed puberty suppressing hormones by UK private prescribers or non-UK registered prescribers, including those in the EEA or Switzerland.

Make a best interest assessment on whether to continue prescribing as permitted by emergency legislation, (which is now extended until Tuesday 26 November 2024).

Appendix A

Unregulated endocrine intervention

Some children and young people who are waiting for a referral or appointment at a specialist gender incongruence service may have sourced endocrine intervention from unregulated providers or unregulated sources.

These interventions typically are puberty suppressing hormones (gonadotrophin-releasing hormone [GnRH] analogues) and exogeneous gender affirming hormones. The NHS strongly discourages the use of medicines from unregulated sources.

In March 2024 the NHS adopted a policy that puberty suppressing hormones are not to be prescribed to gender variant children outside of a clinical study because of the limited evidence about risks, benefits and outcomes.

Puberty suppressing hormones

Puberty suppressing hormones (gonadotrophin-releasing hormone analogues, also known as puberty blockers) are used to suppress the onset of secondary sexual characteristics and are administered by injection, implant or nasal spray.

These medicines consist of or contain:

buserelin
gonadorelin
goserelin
leuprorelin acetate
nafarelin
triptorelin

This category includes, but is not limited to, medicines sold under the brand names:

Decapeptyl®
Gonapeptyl Depot®
Salvacyl®
Prostap®
Staladex®
Zoladex®
Synarel

In May 2024 regulations were put in place to restrict the prescribing and supply of puberty-suppressing hormones to children and young people under 18, when used for the purpose of puberty suppression (in those experiencing gender dysphoria or incongruence).

From June 2024 it is a criminal offence for a pharmacist, doctor or any other individual in Great Britain to sell or supply puberty suppressing hormones to children and young people under the age of 18, except in prescribed circumstances, and for an individual to possess the medications outside of the prescribed exceptions. This is described on the gov.uk website.

This emergency ban on prescribing these drugs has now been extended until the end of Tuesday 26 November 2024.

The ban applies to prescriptions for these drugs, written by UK private prescribers and prescribers registered in the European Economic Area (EEA) or Switzerland.

In addition, the government has also introduced indefinite restrictions to the initiation of prescribing of these medicines within NHS primary care in England. Pharmacies in Great Britain will no longer be able to dispense new prescriptions for GnRH analogues from non-UK registered prescribers, including those in the EEA or Switzerland, for anyone aged 17 years or under.

However, it is recognised that the individuals who will be most impacted by the government order are those under 18 years of age who are currently receiving a prescription for GnRH analogues for any reason from a healthcare professional who is registered outside of the United Kingdom in the European Economic Area (EEA) or Switzerland, or who intended to obtain such a prescription.

Therefore, for those individuals who were receiving GnRH analogues, but who are no longer able to have prescriptions from Europe dispensed by a British pharmacy: a private or NHS prescriber who is registered in the UK (including the individual’s GP) may agree to accept responsibility for continued prescribing if they consider it to be in the best interests of the patient and if they feel competent to prescribe. It is therefore for determination on a case-by-case basis by the relevant healthcare professional.

Gender affirming hormones

Gender affirming hormones are used to encourage the development of physical characteristics of the preferred sex and are administered as an oral pill, injection or through a skin preparation. They may cause irreversible changes such as breast development, deepening of the voice and compromised fertility.

Gender affirming hormones may only be prescribed on the recommendation of a consultant paediatric and adolescent endocrinologist through the NHS CYP Gender Service if strict criteria are met, from the age of 16 years, and subject to the recommendation for initiation of the intervention being endorsed by a national multidisciplinary team that has an independent chair.

Actions in the event of self-medication

If the child or young person referred to your service is currently receiving/taking puberty suppressing hormones or gender affirming hormones from an unregulated source, please:

review advice from the interim service specification for the new CYP Gender Service on the prescribing of hormone treatments in young people (note: the General Medical Council has provided advice for adults (only))
advise the young person and their parent/carer that they should not continue to take this type of medication, or similar products obtained through these routes
remind them that following the government’s legislation, possession of GnRH analogues is a criminal offence in cases where the individual had reasonable cause to know that the medicine had been sold or supplied in breach of the government’s ban
provide information on the limited research evidence for hormone treatments, including long term side-effects of treatment
highlight the increased risks of possible harm due to the unregulated status of the provider issuing prescriptions for hormone treatment
highlight the information that has been circulated to patients about the changes in legislation (available at the Arden and GEM CSU website)
for medication sourced directly (for example, via the internet), explain the increased risks of harm due to the unregulated nature of these medicines/products. These may include the use of counterfeit chemicals, unsafe/unknown ancillary ingredients or variability of potency, etc; more information can be found on the NHS.UK website.
make a best interest decision as to whether to continue prescription of GnRH analogues; this is permissible in the context of the emergency regulations; initiation of treatment is not permissible
if the child/young person or their carer disregards your advice, and you consider that this puts the child/young person at increased risk, then the usual safeguarding processes must be followed in line with national and local legislation and standard safeguarding approaches; discuss with your line manager and with your organisation’s safeguarding lead
take steps to ensure the physical health of the child or young person is appropriately monitored, (and has not been compromised by taking these medicines – for example, impact on mineral bone density, blood tests)
seek, where necessary, further specialist paediatric endocrine advice from the NHS-commissioned specialist paediatric endocrinology clinics at Leeds Teaching Hospitals NHS Trust and University College of London Hospitals NHS Foundation Trust

(cont)

Appendix B

ICD 11 – Gender incongruence

Gender incongruence of adolescence or adulthood (ICD-11 HA60):

Gender incongruence of adolescence and adulthood is characterised by a marked and persistent incongruence between an individual’s experienced gender and the assigned sex, which often leads to a desire to ‘transition’, to live and be accepted as a person of the experienced gender, through hormonal treatment, surgery or other healthcare services to make the individual’s body align, as much as desired and to the extent possible, with the experienced gender.

The diagnosis cannot be assigned prior the onset of puberty.

Gender variant behaviour and preferences alone are not a basis for assigning the diagnosis.

Gender incongruence of childhood (ICD-11 HA61):

Gender incongruence of childhood is characterised by a marked incongruence between an individual’s experienced/expressed gender and the assigned sex in pre-pubertal children.

It includes:

a strong desire to be a different gender than the assigned sex
a strong dislike on the child’s part of his or her sexual anatomy or anticipated secondary sex characteristics and/or a strong desire for the primary and/or anticipated secondary sex characteristics that match the experienced gender
make-believe or fantasy play, toys, games, or activities and playmates that are typical of the experienced gender rather than the assigned sex

The incongruence must have persisted for about 2 years.