Interim service specification for specialist gender dysphoria services for children and young people – public consultationCloses 4 Dec 2022
Opened 20 Oct 2022
Contact
NHS England Specialised Commissioning
england.scengagement@nhs.net
Overview
NHS England commissions specialised services for people with gender dysphoria, and it is holding this consultation to seek views on a proposed interim service specification for services for children and young people with gender dysphoria.
Once agreed, this interim service specification will be operational for a limited time only until a new service specification is formed in 2023/24 that will be used by a new configuration of regional providers.
In order to complete this consultation, please review the following documents:
- Consultation guide
- Specialist service for children and young people with gender dysphoria (phase 1 providers)
- Equality and Health Inequalities Impact Assessment
The public consultation will run from 20 October to 4 December 2022.
Why your views matter
NHS England is committed to working with patients, patient groups and other stakeholders in the development of its commissioning of services. This public consultation is an opportunity to check whether proposals are right and supported, whether the public understand their impact, and to identify any alternatives before decisions are made.
Give us your views
Online Survey
Related
- Consultation guide330.9 KB (PDF document)
- Specialist service for children and young people with gender dysphoria (phase 1 providers)390.4 KB (PDF document)
- Equality and Health Inequalities Impact Assessment673.7 KB (PDF document)
https://www.engage.england.nhs.uk/sp...oria-services/
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Public consultation
Interim service specification for specialist gender
dysphoria services for children and young
people
20 October 2022
...
Background
The term used to describe a discrepancy between birth-assigned sex and gender
identity is ‘gender incongruence’. Gender incongruence is frequently, but not
universally, accompanied by the symptom of gender dysphoria: “a disorder
characterized by a strong and persistent cross-gender identification (such as stating
a desire to be the other sex or frequently passing as the other sex) coupled with
persistent discomfort with his or her sex”.
There is currently only one provider of specialist services for children and young
people (up to the 18th birthday) with gender dysphoria in England – this is the
Gender Identity Development Service (GIDS) for children and adolescents, delivered
by the Tavistock and Portman NHS Foundation Trust in London.
The GIDS is also directly commissioned by NHS Wales, and the changes described
in this document will impact on patients who are the commissioning responsibility of
NHS Wales.
...
Interim service specification: the case for change
In September 2020, NHS England commissioned an independent and wide-ranging
review of gender identity services for children and young people. The Review, which
is ongoing, is being led by Dr Hilary Cass, past president of the Royal College of
Paediatrics and Child Health. It was established in response to a complex and
diverse range of issues including:
1. A significant and sharp rise in referrals
In 2021/22 there were over 5,000 referrals into the Gender Identity Development
Service (GIDS) run by the Tavistock and Portman NHS Foundation Trust. This
compares to just under 250 referrals in 2011/12.
2. Marked changes in the types of patients being referred which are not well
understood
There has been a dramatic change in the case-mix of referrals from predominantly
birth-registered males to predominantly birth-registered females presenting with
gender incongruence in early teen years. Additionally, a significant number of
children are also presenting with neurodiversity and other mental health needs and
risky behaviours which requires careful consideration and needs to be better
understood.
3. Scarce and inconclusive evidence to support clinical decision making
This has led to a lack of clinical consensus on what the best model of care for
children and young people experiencing gender incongruence and dysphoria should
be; and a lack of evidence to support families in making informed decisions about
interventions that may have life-long consequences.
4. Long waiting times for initial assessment and significant external scrutiny
and challenge surrounding the clinical approach and operational capacity at
GIDS
This has contributed to the current service being unable to meet the scale of rising
demand and concerns being raised by healthcare regulators about the standard of
care.
Next steps
In February 2022, Dr Cass published an interim report in which she set out initial
findings and advice from her Review. She emphasised the need to urgently move
away from the current model of a sole provider, and to establish regional services
that work to a new clinical model that can better meet the holistic needs of a
vulnerable group of children and young people. She began to describe the need for
these new services to work as networked centres that connected with other local
services including children and young people’s mental health services and primary
care to support all a patient’s clinical needs.
In July, Dr Cass gave further advice on the core components of this model. You can read the advice in full here.
In summary, she has said:
• ‘Regional centres should be led by experienced providers of tertiary paediatric
care to ensure a focus on child health and development, with strong links to
mental health services. These will generally be specialist children’s hospitals.
• ‘They should have established academic and education functions to ensure
that ongoing research and training is embedded within the service delivery
model’.
• ‘The services should have an appropriate multi-professional workforce to
enable them to provide an integrated model of care that manages the holistic
needs of this population’.
• ‘Staff should maintain a broad clinical perspective to embed the care of
children and young people with gender uncertainty within a broader child and
adolescent health context’.
• In view of the uncertainties surrounding their use, consideration should be
given to the rapid establishment of the necessary research infrastructure to
prospectively enroll young people being considered for puberty blocking drugs
..
What are the proposed changes?
The interim service specification proposes the following changes and points of
clarification over the current service specification.
1. Composition of the clinical team – substantive change
The current service specification for GIDS describes that the service is delivered
through a specialist multidisciplinary team with contributions from specialist social
workers, family therapists, psychiatrists, psychologists, psychotherapists, paediatric
and adolescent endocrinologists and clinical nurse practitioners. The new interim
service specification proposes to extend the clinical team so that it is a more
integrated multi-disciplinary team that, in addition to gender dysphoria specialists,
will include experts in paediatric medicine, autism, neurodisability and mental health.
...
2. Clinical leadership – substantive change
The current service specification for GIDS does not describe criteria for the clinical
lead for the service. The new interim service specification proposes that the clinical
lead for the service will be a medical doctor.
...
3. Collaboration with, and support for, referrers and local services –
substantive change
The current service specification for GIDS describes a tiered approach for
progression through the clinical pathway: the first tier involves meetings between the
GIDS team and local professionals involved in the care of the child or young person
and the second tier involves the child or young person accessing local services for
mental health needs with GIDS offering advice to local services.
...
4. Referral sources – substantive change
The current service specification for GIDS states that referrals can be made by staff
in health and social services, schools, colleges of further education and by voluntary
organisations. The new interim service specification proposes that referrals may be
made by GPs and NHS professionals.
...
5. Social transition – clarification
The current GIDS service specification acknowledges that social transition in prepubertal
children is a controversial issue, that divergent views are held by health professionals, and
that the current evidence base is insufficient to predict the longterm outcomes of complete
gender-role transition during early childhood.
The interim Cass Report has advised that although there are differing views on the
benefits versus the harms of early social transition, it is important to acknowledge
that it should not be viewed as a neutral act. Dr Cass has recommended that social
transition be viewed as an ‘active intervention’ because it may have significant
effects on the child or young person in terms of their psychological functioning.
In line with this advice, the interim service specification sets out more clearly that the
clinical approach in regard to pre-pubertal children will reflect evidence that in most
cases gender incongruence does not persist into adolescence; and that for
adolescents the provision of approaches for social transition should only be
considered where the approach is necessary for the alleviation of, or prevention of,
clinically significant distress or significant impairment in social functioning and the
young person is able to fully comprehend the implications of affirming a social
transition.
Endocrine Interventions
Building the research protocol
The interim service specification reads:
"Consistent with advice from the Cass Review highlighting the uncertainties
surrounding the use of hormone treatments, NHS England is in the process of
forming proposals for prospectively enrolling children and young people being
considered for hormone treatment into a formal research programme with
adequate follow up into adulthood, with a more immediate focus on the
questions regarding GnRHa. On this basis NHS England will only commission
GnRHa in the context of a formal research protocol. The research protocol will
set out eligibility criteria for participation.”
In due course NHS England will share details of this work, including plans for how
stakeholders and the public will be engaged and consulted on eligibility criteria.
Placing the use of GnRHa in the context of clinical research will have several
important benefits:
• It responds directly to Dr Cass’ advice that ‘Without an established research
strategy and infrastructure, the outstanding questions will remain unanswered and
the evidence gap will continue to be filled with polarised opinion and conjecture,
which does little to help young people, and their families and carers, who need
support and information on which to make decisions’. In this respect the NHS has
the opportunity to make a major international contribution to the evidence base in
this area.
• Secondly, it will ensure that there is greater transparency for children and their
parents / carers around the uncertain clinical benefits and longer-term health
impacts surrounding their use.
• Thirdly, it will further strengthen the consent and information sharing process to
support informed decision making by young people.
Unregulated drugs
The current service specification for GIDS states that GIDS does not offer shared
care with private clinicians, and that in cases where puberty blocking drugs or
hormone drugs are prescribed or accessed outside the service, the GIDS will make
the young person and their family aware of the risks, contraindications and any
irreversible or partly reversible effects of any interventions, and will be unable to
provide ongoing clinical supervision for the management of these interventions.
The proposed interim specification reads:
“Children, young people and their families are strongly discouraged from
sourcing GnRHa and masculinising / feminising hormone drugs from
unregulated sources or from on-line providers that are not regulated by UK
regulatory bodies. In such cases The Service will make the child or young
person and their family aware of the risks, contraindications and any
irreversible or partly reversible effects of the drugs and will advise the GP to
initiate local safeguarding protocols.
“Should a child or young person access GnRHa from unregulated sources or
unregulated providers The Service will not assume responsibility for
prescribing recommendations nor will it enter into shared cared arrangements
in these circumstances.
“Where a child or young person has obtained masculinising / feminising
hormones from an unregulated source (such as the internet) The Service will
not accept clinical responsibility for management of the endocrine
intervention.
The reason for the revised wording is to provide greater clarity and retain and
strengthen current safeguards. Senior clinicians have advised NHS England on the
need for the new interim service specification to have much clearer wording in this
regard so that the interim service specification is less open to interpretation, so that
young people, families and professionals are clear on the approach that will be
adopted by the NHS in such cases.
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https://www.engage.england.nhs.uk/sp...-people-22.pdf
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