Healthcare

HSCB Draft Objectives for Gender Identity Services in Northern Ireland.

The Health and Social Care Board (HSCB) is conducting ongoing consultation on changes to Gender Identity Services in Northern Ireland. They have recently published 14 draft objectives that they propose new gender-affirming healthcare services should meet, and are seeking input from interested individuals and groups. We encourage trans individuals and organisations as well as allies to feed into these objectives. Information and methods to provide feedback are listed on the HSCB website: http://www.hscboard.hscni.net/gender-identity-service/

TransgenderNI has examined the draft objectives and our responses are set out below. We welcome the HSCB’s willingness to introduce new and fit-for-purpose gender-affirming health services for trans and questioning people in Northern Ireland but stress that services must not continue to be based in outdated, psychiatric models of assessment and care. Instead, health services in Northern Ireland should adopt and adapt models of care from the decades of human-rights-based practice around the world.

  1. The service needs to offer more timely access for those individuals who are referred to it in line with Department of Health waiting times.
    We agree that as a form of essential healthcare, gender-affirming healthcare services must be provided in a timely manner and with respect to the existing legal and policy obligations regarding waiting times. At present, adult gender identity services in Northern Ireland have effectively frozen their waiting lists, and this has been the case since early 2019. The impact on trans communities of these delays are avoidable and significant mental health distress, and the accruement of debt through being forced to access care privately. We argue that the current care pathway, or anything approximating it, will not be sustainable in the long term, as has been strongly demonstrated in NI. Therefore, to reach this objective, the model of care must adopt international best practice outside of a psychiatric and psychosexual realm. The service must be properly commissioned – adult gender identity services have never been formally commissioned in NI. 
  2. It is preferable if a referral is made through an individual’s GP but arrangements need to be put in place for self referral as well.
    We welcome an ability for individuals to self-refer to gender identity services, as is increasingly common across the UK and is standard practice elsewhere in the world. Due to the highly sporadic nature of GP knowledge on transgender healthcare issues, and of contemporary hostility that some individuals experience from their GPs, this is a necessary pathway for accessible care. If GP continues to be the preferred option for referrals, this will require significant resourcing of GP training to ensure no further barriers are placed in the way of trans communities accessing care. 
  3. The population of Northern Ireland needs to be assured that the service they receive is high quality, promotes dignity and respect, and meets professional standards.
    This could be said for any public health service. Whereas we agree that trans individuals and communities need to be assured of this, it must be assured through practice and not through public relations or communications. Continuation of the psychiatric model of gender identity services is unlikely to change perceptions within trans communities and their families, whereas adoption of modern care models is more likely to. The current model of care and activities within gender affirming services act to denigrate trans individuals through inappropriate questions and lines of interrogation centring around sexual activities and trauma. Again, this stems from the psychosexual model within which our gender affirming services operate – a model which should be abandoned not just in name, but also in practice. 
  4. The service needs to be sustainable and able, as far as possible, to withstand the usual challenges of staff turnover without undermining the delivery of the service.
    As with Objective 3, this is a very general proposal, but must be demonstrated in practice through adaptive and suitable models of care following international best practice. At present, it is unlikely that expanding the current model will be sustainable given growing patient numbers. The invasive and unnecessary interrogation of trans peoples’ identities, as well as the requirement for ‘real life experience’ and ‘reasonably well-controlled mental health’, create lengthy artificial waits and cement the lack of sustainability of the current services by increasing patient backlog and impacting staff morale. 
  5. The service needs to be equitable and accessible for those individuals who meet the criteria for care regardless of where you live in Northern Ireland.
    The criteria of care must be established so that they provide access for any trans or questioning individual to support around their gender identity, and/or access to other interventions they may require. The current model centred in Belfast is disruptive and inaccessible for many people in Northern Ireland and a decentralised model based on primary care and Trust hubs would be more suitable, similar to how other services are delivered across the Trusts. The reliance on one single point of assessment for gender affirming care, lack of willingness to accommodate telemedicine, alongside a rigid care pathway not centred on the needs of the individual, disadvantages all trans people but especially those in rural areas and those in the Western area. 
  6. The care provided needs to be person-centred, based on shared decision-making and flexible to meet the needs of individuals within the commissioned care pathway.
    We agree that the care pathway must provide flexibility and choice to patients. This must be available on the timescales needed by individuals accessing the service, and must provide for atypical pathways through services and less common orders or combinations of interventions. In line with legal obligations and to the various Trust’s obligations to progress disability rights, care must be available on a full and equal basis to disabled individuals, and outright or de-facto exclusions based on neurodivergence, disability or health conditions are not acceptable. In line with the UN Convention on the Rights of Persons with Disabilities, this extends to all disabled people without exceptions. In line with other health services, patients must be provided with decision making rights to their own healthcare choices. We remind the Board that despite domestic law, the health service’s obligations under the CRPD prohibit the removal of legal capacity or the instalment of substituted decision making. Current services rely on a rigid and unchangeable assessment process, regardless of individual needs and not taking into account the point of transition that the individual is at. Further, current services and treatment pathways have not been adapted to ensure access for non-binary individuals who may require alternative treatment ie microdosing. 
  7. The transition from adolescent to adult services needs to be seamless so that age appropriate services are available to all individuals during their gender journey and that no barriers are erected that will interrupt or interfere with the individual’s gender journey.
    We agree that a transfer from child and adolescent services to adult services must be seamless and comfortable, with full transferal of records, information, care plans and all other relevant information. Care pathways must be established to abolish the need for reassessment upon transferal to adult services except in extremis. In line with children’s rights law domestically and internationally, we recommend that arbitrary age limits for healthcare interventions are removed where possible, to be replaced with the standard of individual need based on a child’s evolving capacity. In line with the CRPD, disability must not be used as a reason to deny a child’s capacity. As is the case for adult services, mental health professionals being the first point of contact for trans children is not best-practice, and acts as a specific barrier to autistic and otherwise neurodiverse trans children and young people. The current requirement for referral to CAMHS prior to gender affirming services should be abandoned. 
  8. The role of the GP needs to be clarified and supported. The service needs to link more closely with GPs so that ongoing care and support from GPs can be managed appropriately where it is safe to do so.
    GPs should be provided with the information and tools needed to support their trans and questioning patients. They should also be the default option for the prescription and supervision of hormone replacement therapy in line with cisgender (non-transgender) patients where possible. Like how ADHD and other services operate privately and publicly in NI, shared care agreements should be made a standard choice for GPs, with input from specialists as required. Patients must be able to continue hormonal intervention after discharge from gender identity services. If possible, GPs should be contracted for relevant care in line with cisgender patients, including for the prescription and monitoring of hormone replacement therapy. As is the case in Wales and many other parts of the world, the GP is becoming the primary deliverer of gender affirming care on the basis of informed consent. The HSCB should recognise the shift in best practice for delivery of gender affirming care from specialised services to primary care, and put measures in place to ensure Northern Ireland does not continue to fall behind international best practice. 
  9. Inputs from other professionals such as Endocrinology, Speech and Language Therapy, Mental Health, Dermatology etc need to be arranged in such a way that they are available and accessible in a timely manner to individuals as and when required.
    We agree with this, and that access to these services should not be based on progression down any specific pathway through gender identity services – someone should be able to access SLT prior to mental health services should they require it, etc. 
  10. The role of the voluntary and community sector in providing support and advice needs to be an integral part of the care pathway.
    The community and voluntary sector has always and continues to pick up the pieces from present failures in gender identity services in Northern Ireland, providing information both on public and private providers, and to harm reduction information for self-medicating individuals, as well as providing social and peer support across the region. The LGBTQ/trans community sector operates independently from health services in most respects and this is necessary for advocacy work. However, community-based gender identity services are an excellent way to provide care, and we would welcome their commissioning and funding through genuine and good-faith codesign and coproduction. 
  11. The service needs to be underpinned by awareness raising and training across the wider Health and Social Care.
    We have seen first-hand the benefits of appropriate training for health and social care staff on issues relating to transgender healthcare and human rights, and urge that this work be commissioned and funded, codeveloped and delivered by the community and voluntary sector.
     
  12. In line with the World Health Organisation recommendation, the service should not be hosted within Mental Health services.
    We welcome this clarity and urge the Board to remove gender identity services from within mental health services. Since the WHO’s removal of transsexualism from the mental and behavioural chapter of the International Classification of Diseases 11, and its installation of gender incongruence into the sexual health chapter, we urge that gender identity services in NI are rolled out like any other sexual health service.In line with good practice internationally, access to care must not be on the basis of psychiatric or other mental health assessments, and instead based on identified needs of the patients and agreed through informed consent processes.

    In short, the current invasive and often humiliating assessment procedures must be abandoned, and care provided on the basis of individuals’ needs and rights.

     

  13. The service needs to represent value for money and be affordable.
    We agree that any public health service must operate efficiently. It must also provide equal access to care for all, including disabled people. The current psychiatric/psychosexual model of care is extremely inefficient, and highly expensive for the low quantity and extremely variable quality of care provided. This objective is best realised through adoption of modern models of care based on human rights and informed consent. Policies and procedures stemming from this psychosexual model which introduce artificial waiting times – such as the requirement for ‘real life experience’ – not only act as barriers for trans individuals accessing care but also significantly drains already limited resources. 
  14. The service model needs to be deliverable in terms of being able to provide the staff for the service within Northern Ireland or to develop working arrangements with other jurisdictions.
    We agree with this, and encourage that training and progression is available for staff within services to develop the necessary skills as they work, leading to long-term sustainability of services and institutional knowledge here in Northern Ireland. We specifically recommend the resourcing and training of trans individuals interested in working within gender affirming services. As we have seen through the delivery of community health programmes such as sexual health testing and counselling delivered by the Rainbow Project, LGBT+ communities have the best experiences when accessing care delivered by LGBT+ communities. Further, due to the longstanding failings of gender affirming services in the region, trans communities have had to develop an expertise in our own healthcare, creating a pool of already well-versed trans individuals able and willing to help others in similar positions. Working with trans individuals interested in delivering this care would help alleviate the widespread mistrust of statutory services within trans communities in the region, and would begin to address the power dynamics that exist between trans communities and healthcare professionals.