Independent Review of Gender Identity Services for Children and Young People: Final Report

Given the complexity of this population, these services must operate to the same standards as other services seeing children and young people with complex presentations and/or additional risk factors. There should be a nominated medical practitioner (paediatrician/child psychiatrist) who takes overall clinical responsibility for patient safety within the service.

Clinicians should apply the assessment framework developed by the Review's Clinical Expert Group, to ensure children/young people referred to NHS gender services receive a holistic assessment of their needs to inform an individualised care plan. This should include screening for neurodevelopmental conditions, including autism spectrum disorder, and a mental health assessment. The framework should be kept under review and evolve to reflect emerging evidence.

Standard evidence based psychological and psychopharmacological treatment approaches should be used to support the management of the associated distress and co-occurring conditions. This should include support for parents/carers and siblings as appropriate.

When families/carers are making decisions about social transition of pre-pubertal children, services should ensure that they can be seen as early as possible by a clinical professional with relevant experience.

NHS England, working with DHSC should direct the gender clinics to participate in the data linkage study within the lifetime of the current statutory instrument. NHS England's Research Oversight Board should take responsibility for interpreting the findings of the research.

The evidence base underpinning medical and non-medical interventions in this clinical area must be improved. Following our earlier recommendation to establish a puberty blocker trial, which has been taken forward by NHS England, we further recommend a full programme of research be established. This should look at the characteristics, interventions and outcomes of every young person presenting to the NHS gender services.

- The puberty blocker trial should be part of a programme of research which also evaluates outcomes of psychosocial interventions and masculinising/feminising hormones.
- Consent should routinely be sought for all children and young people for enrolment in a research study with follow-up into adulthood.

Long-standing gender incongruence should be an essential pre-requisite for medical treatment but is only one aspect of deciding whether a medical pathway is the right option for an individual.

NHS England should review the policy on masculinising/feminising hormones. The option to provide masculinising/feminising hormones from age 16 is available, but the Review would recommend extreme caution. There should be a clear clinical rationale for providing hormones at this stage rather than waiting until an individual reaches 18.

Every case considered for medical treatment should be discussed at a national Multi Disciplinary Team (MDT) hosted by the National Provider Collaborative replacing the Multi Professional Review Group (MPRG).

All children should be offered fertility counselling and preservation prior to going onto a medical pathway.

NHS England and service providers should work to develop the regional multisite service networks as soon as possible. This could be based on a lead provider model, where NHS England delegates commissioning responsibility to the regional services to subcontract locally to providers in their region.

The National Provider Collaborative should be established without delay.

To increase the available workforce and maintain a broader clinical lens, joint contracts should be utilised to support staff to work across the network and across different services.

NHS England, through its Workforce Training and Education function, must ensure requirements for this service area are built into overall workforce planning for adolescent services.

NHS England should commission a lead organisation to establish a consortium of relevant professional bodies to:

- develop a competency framework
- identify gaps in professional training programmes
- develop a suite of training materials to supplement professional competencies, appropriate to their clinical field and level. This should include a module on the holistic assessment framework and approach to formulation and care planning.

The National Provider Collaborative should coordinate development of evidence-based information and resources for young people, parents and carers. Consideration should be given as to whether this should be a centrally hosted NHS online resource.

A core national dataset should be defined for both specialist and designated local specialist services.

The national infrastructure should be put in place to manage data collection and audit and this should be used to drive continuous quality improvement and research in an active learning environment.

NHS England and the National Institute for Health and Care Research should ensure that the academic and administrative infrastructure to support a programme of clinically-based research is embedded into the Regional Centres.

A unified research strategy should be established across the Regional Centres, co-ordinated through the National Provider Collaborative and the Research Oversight Board, so that all data collected are utilised to best effect and for sufficient numbers of individuals to be meaningful.

To ensure that services are operating to the highest standards of evidence the National Institute for Health and Care Research should commission a living systematic review to inform the evolving clinical approach.

Within each regional network, a separate pathway should be established for pre-pubertal children and their families. Providers should ensure that pre-pubertal children and their parents/carers are prioritised for early discussion with a professional with relevant experience.

NHS England should ensure that each Regional Centre has a follow-through service for 17-25-year-olds; either by extending the range of the regional children and young people's service or through linked services, to ensure continuity of care and support at a potentially vulnerable stage in their journey. This will also allow clinical, and research follow up data to be collected.

Given that the changing demographic presenting to children and young people's services is reflected in a change of presentations to adult services, NHS England should consider bringing forward any planned update of the adult service specification and review the model of care and operating procedures.

NHS England should ensure there is provision for people considering detransition, recognising that they may not wish to re-engage with the services they were previously under.

The Department of Health and Social Care and NHS England should consider the implications of private healthcare on any future requests to the NHS for treatment, monitoring and/or involvement in research. This needs to be clearly communicated to patients and private providers.

The Department of Health and Social Care should work with the General Pharmaceutical Council to define the dispensing responsibilities of pharmacists of private prescriptions and consider other statutory solutions that would prevent inappropriate overseas prescribing.

The NHS and the Department of Health and Social Care needs to review the process and circumstances of changing NHS numbers and find solutions to address the clinical and research implications.

NHS England should develop an implementation plan with clear milestones towards the future clinical and service model. This should have board level oversight and be developed collaboratively with those responsible for the health of children and young people more generally to support greater integration to meet the wide-ranging needs of complex adolescents.

NHS England should establish robust and comprehensive contract management and audit processes and requirements around the collection of data for the provision of these services. These should be adhered to by the providers responsible for delivering these services for children and young people.

Professional bodies must come together to provide leadership and guidance on the clinical management of this population taking account of the findings of this report.

Wider guidance applicable to all NHS services should be developed to support providers and commissioners to ensure that innovation is encouraged but that there is appropriate scrutiny and clinical governance to avoid incremental creep of practice in the absence of evidence.