Referral pathway for Children and Young People’s Gender Services

Guidance for NHS Mental Health Services

Purpose

This document provides children and young people’s (CYP) mental health 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 CYP Gender Service
  • support resources that are available to you

Note: Parallel guidance has been provided to community and hospital paediatric 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 nor to work beyond your existing competencies; but to use, as appropriate, your experience and generalisable skills.
  • 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)
  • NHS CYP mental health teams have the competencies to holistically assess and make diagnostic/clinical formulations for these children and young people and develop treatment plans for these presentations.
  • For children and young people with significant features of gender incongruence, including persistent questioning or distress, your service should refer and co-ordinate onward care, where indicated, to the NHS CYP Gender Service (see below) following local assessment, formulation and allocation or referral to appropriate interventions.
  • Your service is not expected to diagnose gender incongruence or form an individual care plan for this aspect of care.
    • It is expected that you will complete a comprehensive assessment as you would for any other children and young people; and will co-produce a holistic formulation based on this assessment.
    • Gender questioning or distress may form a part of this formulation.
  • 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.

Local actions and expectations following referral

Where a referral is made to the NHS CYP Gender Service, your service is asked to continue to provide support and intervention to the child or young person while they remain on the waiting list, 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 for CYP Gender Services 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 or risks.

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.

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 Children and Young People’s Gender Service, using an electronic form that is available on the NHS Arden and Greater East Midlands (GEM) Commissioning Support Unit (CSU) website.

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 CYP Mental Health Teams

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 between the local CYPMH service and the local community and hospital paediatric services.

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.

Through a process of assessment and clinical formulation, including diagnoses and risk assessment, confirm primary concerns and identify support needs.

Undertake a developmentally informed holistic (biopsychosocial) assessment and formulation of the child or young person’s needs.

The formulation will support the development of a care plan which:

–       Addresses identified risk and co-creates safety plans as clinically indicated.

–       Reduces distress and supports any associated mental health issues and psychosocial stressors, including offering NICE-compliant evidence-based treatment for co-existing mental health conditions, to optimise the child/young person’s functioning and support them to make complex decisions.

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

See Appendix A in regard to CYP who source endocrine medication from unregulated sources.

CYP and their parents/carers should always receive a separate interview as part of the assessment, formulation 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 CYP meets the criteria for a referral to the NHS CYP 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 CYP 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 on the NHS Arden and GEM CSU 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 CYP 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 CYP 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 the CYP has 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 has been prescribed puberty suppressing hormones by UK private prescribers or non-UK registered prescribers, including those in the EEA or Switzerland.

A best interest assessment should be made for CYP who have been prescribed puberty blockers  by non-UK registered prescribers, including those in the EEA or Switzerland as to whether to continue prescription as permitted by emergency legislation (which is now extended until 26 November 2024).

Mental health practitioners can prescribe continuation of GnRH analogues if they feel they have the relevant competencies and resources to do this safely and with the support of their employer.

If not, clinicians should liaise with the patient’s GP, local paediatric team or specialist gender services.

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 and 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.

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 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:

  1. 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))
  2. 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
  3. remind them that because of the government’s legislation, possession of GnRH analogues is a criminal offence where the individual had reasonable cause to know that the medicine had been sold or supplied in breach of the government’s ban
  4. provide information on the limited research evidence for hormone treatments including long term side-effects of treatment
  5. highlight the increased risks of possible harm due to the unregulated status of the provider issuing prescriptions for hormone treatment
  6. highlight the information that has been circulated to patients about the changes in legislation (available from the NHS Arden and GEM CSU website)
  7. 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
  8. 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
  9. 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
  10. take steps to ensure the physical health of the child or young person is appropriately monitored, (and has not been compromised as a result of taking these medicines – for example, impact on mineral bone density, blood tests)
  11. 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

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’, in order to live and be accepted as a person of the experienced gender, through hormonal treatment, surgery or other health care 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.

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

Appendix C

Useful resources and information

Additional online educational materials for secondary care professionals are planned to be made available by the NHS in 2024/25.

Publication reference: PRN01545_ii