Purpose of this document
NHS England is committed to working with a wide range of patients, patient groups and other stakeholders in the development of its commissioning of services. A public consultation is an opportunity to check whether proposals are right and supported, the public understand their impact, and identify any alternatives before decisions are made.
NHS England is the responsible commissioner for specialised services for individuals with gender dysphoria, and it is holding this consultation to seek views on changes to the referral pathway into the Children and Young People’s (CYP) Gender Incongruence Service, how the national waiting list is managed and how transfers are made from the waiting list into the service.
The public consultation will run for 90 days from 7 December 2023 to 6 March 2024.
This consultation guide summarises the proposed changes to the referral pathway into the specialist service and sets out how the waiting list is managed.
We recommend that you read this consultation guide alongside the other documents published as part of the consultation, including the service specification, the Equality and Health Inequalities Impact Assessment (EHIA), and the engagement report. While this consultation guide has been produced to summarise the proposals, the other documents provide additional detail and important context.
Documents included in this consultation:
- Service specification – The service specification is a contractual document that describes the referral pathway into the specialist service for children and young people with gender incongruence.
- Equality and Health Inequalities Impact Assessment (EHIA) – This document assesses the potential impact of the service specification on population groups that may be disproportionately affected by changes and make appropriate recommendations to mitigate any inequity.
Background
There is currently only one provider of specialist services for children and young people with gender dysphoria in England; the Gender Identity Development Service (GIDS), delivered by the Tavistock and Portman NHS Foundation Trust in London.
Following interim advice from the Cass Review in 2022, NHS England set out plans to start building a more resilient service by expanding provision and enhancing the focus on clinical effectiveness, safety, and patient experience.
The first phase in these plans is to establish two new nationally networked services which – in keeping with Dr Cass’ advice – will be led by specialist children’s hospitals. More information about the new service and providers can be found on the NHS England website.
The Tavistock GIDS service will close on 31 March 2024. As part of the managed transition to new services, the waiting list for GIDS has transferred from the Tavistock and Portman NHS Foundation Trust to NHS Arden & GEM Commissioning Support Unit to hold on behalf of NHS England. Children and young people on the waiting list will begin to be transferred to one of the new providers as the services begin to open, in chronological order using the date of referral to GIDS.
In June 2023, NHS England published an interim service specification for specialist gender incongruence services for children and young people to support the new providers in developing their services. The public consultation on this draft interim service specification ran on the NHS England website for 45 days from 20 October to 4 December 2022.
In light of the feedback from consultation, NHS England decided to form a separate service specification which described in greater detail the process for making referrals into the service, as well as the process for managing the national waiting list held by NHS Arden & GEM Commissioning Support Unit. This consultation seeks feedback on this further specification.
Stakeholder engagement
NHS England sought feedback on this draft specification and the draft EHIA with registered stakeholders for a period of three weeks from 3 – 28th August 2023. NHS England thanks all those who took the time to respond.
You can register as a stakeholder for this service. Registered stakeholders receive important updates on the programme and are occasionally invited to comment on proposed changes ahead of public consultation.
NHS England received 71 responses during stakeholder testing. A summary of the responses can be found in the Engagement Report which forms part of the suite of documents that support this consultation. The engagement report was shared with NHS England’s National Programme Board for Gender Dysphoria Services and with NHS England’s Patient and Public Voice Assurance Group to determine whether and for how long public consultation would be required. No changes were made to the specification between engagement and public consultation, but NHS England did make amendments to the EHIA. Please refer to the Engagement Report and the revised EHIA to understand what changes were made.
What are the proposals?
The service specification proposes the following changes from the previous service specification that was used to commission the GIDS at the Tavistock since 2016:
Referral sources
New referrals to the national waiting list may only be made by NHS general paediatric services or CYP mental health services. If agreed, this change would not be applied retrospectively; those currently on the waiting list would not be affected, regardless of their referral source.
In view of the relatively high number of children and young people who present to gender incongruence services with other complex needs, such as mental health needs, neurodiversity or autism, this arrangement will ensure that a holistic needs assessment is undertaken by the NHS and an individual care plan put in place as appropriate before a referral is made into the specialised gender incongruence service. This also helps the NHS to respond to the previous concerns of the Care Quality Commission (the independent regulator of health services) about the lack of support or risk assessment around children and young people while they remained on the waiting list of the Tavistock GIDS.
This arrangement will also facilitate a shared care approach, where relevant to the child or young person’s needs, reflecting the terms of NHS England’s interim service specification for CYP Gender Incongruence Services that describe how the specialist service and local services will collaborate in the best interests of the child or young person. A shared decision is made between the child or young person, the family and local service about the need for a referral to the specialist Gender Incongruence Service.
Children and young people who are registered with a Welsh GP would continue to follow the existing referral protocol put in place by NHS Wales, which is that all referrals are made via CYP mental health services.
Minimum and maximum age restrictions
There is no firm clinical evidence to determine whether a minimum age threshold should apply for referrals into the service and, if so, what that age threshold should be.
To date, there has been no minimum age threshold and children have been referred into the Tavistock GIDS from as young as 4 years.
For some people, this just seems too young, and they are concerned that it could result in unnecessary and inappropriate referrals being made. For example, we know that showing an interest in clothes or toys of the opposite sex- or displaying behaviours more commonly associated with the opposite sex- is reasonably common behaviour in childhood and is usually not indicative of gender incongruence.
On the other hand, some people would argue that there should not be a minimum age threshold as expert NHS support should be available to any child experiencing gender distress. Furthermore, they would argue that having no minimum age threshold may also provide an important safeguarding measure against children being encouraged or supported to take any premature action with regards to their gender identity which might narrow or close down future choices.
Having carefully considered these different perspectives, for the purposes of this consultation a minimum age threshold of 7 years for referral into the service is being proposed as by this time children may have more developed their cognitive, comprehension and communication skills to an extent that they will be able to engage with health professionals in the process of an holistic clinical assessment and formulation, as described in the published NHS interim service specification.
However, NHS England welcomes views on this proposal including the evidence that may support an alternative lower or higher minimum age threshold. A final decision will be taken following consideration of consultation responses. Nevertheless, any age threshold will need to be kept under review as further evidence emerges.
The maximum referral age of 16 is being proposed as a temporary measure and will be revised back to 18 once waiting times for the children’s service have reduced sufficiently. Although young people may be referred into adult gender services from age 17, waiting times for adult services remain very long due to significant workforce capacity constraints which means it is highly unlikely that any young people who are newly referred into adult services from age 17 would be seen until they are at least 18 years of age.
Management of the waiting list
The CYP Gender Incongruence Service will see young people up to their 18th birthday. Reflecting current operational practice, young people who reach 17 years of age while on the waiting list for the children and young people’s gender incongruence service would continue to be removed from the waiting list. They will be advised to consider with their GP whether a referral to an NHS-commissioned Gender Dysphoria Clinic for adults is appropriate for them. If so, their original referral date into the CYP service will be honoured. This arrangement would be in place until the long waiting times into the CYP Gender Incongruence Service are materially reduced.
Interaction between the new Gender Incongruence Services and local health services
A new referral consultation service will be offered by the new providers to help referrers support children and young people and families and determine suitability of a referral to the specialist gender incongruence service.
Give us your views on the proposed changes
NHS England would like to hear what patients, parents and carers, clinicians, providers and other interested parties think about the proposed interim service specification for gender dysphoria services.
These are the questions we’re asking as part of the public consultation:
- In what capacity are you responding?
(Patient / Clinician / Service Provider / Other) - Are you responding on behalf of an organisation?
- To what extent do you agree with the points below?
a) Referrals to the waiting list may only be made by general paediatric services or CYP mental health services.
b) Children under 7 years of age will not be added to the waiting list.
c) Young people aged 17 years will not be added to the waiting list of the children and young people’s gender incongruence service as a temporary measure in response to long waiting times.
d) Young people who reach 17 years of age while on the waiting list for the children and young people’s gender incongruence service will be removed from the waiting list; they may seek a referral into the adult gender service with their original referral date into the CYP service honoured.
e) The role of the pre-referral consultation service.
f) Any other element of the service specification. - To what extent do you agree that the Equality and Health Inequalities Impact Assessment reflects the potential impact on health inequalities which might arise as a result of the proposed changes?
You can share your views with NHS England by completing the online survey.
Please do not submit comments on matters that fall outside the scope of this service specification.
Your feedback will help NHS England to further shape and refine children and young people’s gender dysphoria services.