Gender Identity Service
Review of the Pathway
Objectives for the Regional Gender Identity Service
The Department of Health has asked the Health and Social Care Board to undertake a review of the Regional Gender Identity Service pathway. A multi-agency group has recently been established to take this forward. It is important that the views of service users are heard to shape and inform this review.
For background and further information please click here.
Two listening events were held in November and December last year. Common themes such as information, communication and timely access to services emerged from both events.
A report of the feedback is available on request. Please contact Amanda Weightman on amanda.weightman@hscni.net for further details.
The Group has developed a draft set of objectives to help inform the future direction of the service in the region.
- The service needs to offer more timely access for those individuals who are referred to it in line with Department of Health waiting times.
- 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.
- 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.
- 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.
- The service needs to b e equitable and accessible for those individuals who meet the criteria for care regardless of where you live in Northern Ireland.
- 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.
- 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.
- 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.
- 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.
- The role of the voluntary and community sector in providing support and advice needs to be an integral part of the care pathway.
- The service needs to be underpinned by awareness raising and training across the wider Health and Social Care.
- In line with the World Health Organisation recommendation, the service should not be hosted within Mental Health services.
- The service needs to represent value for money and be affordable.
- 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.
These objectives are informed by significant feedback received from the listening events and from the NHS England Specification for Gender Services.
The development of a set of objectives for the service once agreed, will provide the baseline from which costed proposals can be developed and considered as to where, when and how, a reconfigured RGIS service can be delivered to citizens within NI which addresses existing need and is capable of meeting increasing demand.
The Review Group is therefore keen to hear from interested individuals and groups on the draft objectives.
A hard copy version is also available on request. Please contact Amanda Weightman for further details by emailing amanda.weightman@hscni.net
Interested parties will be invited to engage in further engagement events over the coming weeks.
Click here to read Gender Identity FAQs.
Background
In Northern Ireland, the Health and Social Care Board (HSCB) commissions a range of services for individuals experiencing gender dysphoria.
In line with NHS Guidance, gender dysphoria refers to discomfort or distress that is caused by a discrepancy between a person’s gender identity (how they see themselves with respect to gender) and that person’s sex assigned at birth (and the associated gender role, and/or primary and secondary sex characteristics).
Belfast Health and Social Care Trust (BHSCT) is funded to provide a Regional Gender Identity Service (RGIS) for adults in Northern Ireland.
The service offers a pathway for care, treatment and support through psychological, social and physical transition, and also coordinates interventions for people with gender dysphoria who are diagnosed as requiring gender reassignment surgery. Where individuals are approved by the Health and Social Care Board for gender reassignment surgery, they are currently referred to surgical providers in England as there is no surgical provision in Northern Ireland.
In terms of staffing, the service is very small. With staff turnover and recruitment issues, the service has limited access to consultant and therapist input. Individuals who use the gender clinic also access other services including endocrinology (hormone treatment), speech and language therapy, mental health services and dermatology.
Children and Young People
For children and young people experiencing gender dysphoria, the ‘Knowing Our Identity Service’ (KOI) is commissioned to provide support, care and treatment. Provided by BHSCT, the service is available to all young people across Northern Ireland.
As with the RGIS, the KOI service has a small number of staff who have very specialised skills. Once a young person who has been assessed as having gender identity dysphoria attains the age of 17 ½ and wishes to progress to adult intervention, arrangements should be made for transfer to adult services. However the transition between services has been problematic due to the long waiting times for assessment and treatment in adult services.
Prevalence
The prevalence of gender dysphoria in Northern Ireland is increasing in line with the trend in many other countries. However, it is difficult to get precise statistics on prevalence in NI: the Gender Identity Research and Education Society suggests that 1% of the population may experience some degree of gender dysphoria with a much smaller number seeking access to services. The World Health Organisation (WHO) reports a rate of one person in every 60,000 although later studies from Psychiatric Associations reference a rate of one person in every 20,000.
Whatever the prevalence, we do know that in tandem with other gender identity services across these islands, Northern Ireland has witnessed a significant growth in demand in recent years and services have not been able to keep pace with the increase in numbers coming forward for assessment and treatment:
- In 2009, there were 14 referrals to the RGIS. Ten years later in 2019, there were 132.
- In 2014/15, there were 33 accepted referrals to KOI. In 2018/19, there were 59.
Coupled with staff turnover and recruitment challenges, the growth in demand has led to long waiting lists for treatment and the RGIS has not been able to see any new patients since March 2018. As at July 2020, some 481 people are on the waiting list waiting for their first outpatient appointment. Understandably, this was a significant frustration for many who attended the listening events held in November and December of 2019.
Service Review
In 2019, the Department of Health asked the Health and Social Care Board to lead a review into gender identity services. A review group was established and the terms of reference are available via this link. It is important to note that the review does not include a review of gender reassignment surgical services.
Listening events were organised by the Review Group in November and December 2019 to hear the issues and experiences of those who had used, were using or waiting to use gender services.
Common themes such as information, communication and timely access to services emerged from both events. A report of the feedback is available on request from Amanda Weightman by emailing amanda.weightman@hscni.net.
As part of the fact finding within the Review Group, models from other jurisdictions were explored to see what learning there might be for future service models in Northern Ireland. Conversations were had with colleagues in England, Scotland and the Republic of Ireland in an effort to learn from their experiences and hear of different approaches to delivering gender identity services.
During the COVID lockdown, BHSCT continued to offer a service by providing contact and treatment to individuals on existing caseloads (both RGIS and KOI) but, as before, no new patients were taken off the adult waiting list.
Although face-to-face contact was largely stood down within the service during lockdown, innovative approaches to support individuals included remote working and virtual consultations. It would be helpful to acknowledge the success of these approaches in the future development of services.
Meetings of the Review Group were paused during COVID lockdown. The Group has now been reactivated and has been meeting from July 2020 to review progress.
Next Steps and Objectives
In order to progress this agenda as a matter of priority, the Review Group has developed a draft set of objectives to help inform the future direction of the service in the region.
These objectives are informed by significant feedback received from the listening events and from the NHS England Specification for Gender Services.
Once agreed, the development of a set of objectives will provide the baseline from which a number of options will be developed and assessed to see how best a gender identity service can be delivered which addresses existing need and is capable of meeting demand.
The Review Group is therefore keen to hear from interested individuals and groups on the draft objectives. To access the survey please click here.
To ensure that planning for this service progresses as a matter of priority, it is proposed that comments and considerations are received by 12 midnight on October 7, 2020 in order to progress to the next stage within the Options Appraisal process.