Gender identity healthcare: evaluation of the impact of Scottish Government funding

Executive Summary

This report was commissioned by the Scottish Government (SG) to evaluate the impact of Scottish Government funding allocated to NHS Health Boards for work to improve access to and delivery of gender identity healthcare in Scotland. The overall aim of this evaluation is to understand the impact of Scottish Government investment on waiting times and quality of care, and to support future development and service improvement work. The commissioning of this evaluation forms one of the commitments specified in the NHS Gender Identity Services: Strategic Action Framework 2022-24.

Context

The SG has recognised the need to improve access to and delivery of gender identity services. The NHS Gender Identity Services: Strategic Action Framework 2022-24 sets out commitments and planned actions to improve gender identity healthcare services in Scotland. In May 2022, the National Gender Identity Healthcare Reference Group, which oversees the implementation of the framework, agreed principles for the allocation of funding to support existing gender identity clinics (GICs) to use new approaches to address current waiting lists and provide support for those currently waiting. NHS Health Boards were invited to submit proposals explaining ‘how the gender identity clinic will reduce waiting times both to access its service and between referrals, as well as support those waiting.’

SG improvement funding was allocated to all NHS Health Boards with an existing GIC, which includes four adult gender identity clinics (in NHS Greater Glasgow and Clyde, NHS Lothian, NHS Grampian and NHS Highland) and one young people’s gender identity service (which is based in NHS Greater Glasgow and Clyde). The total allocated to Health Boards with GICs to improve gender identity services since December 2022 is £3.6 million at the time of publication. This evaluation assesses the impact of SG funding allocated to Boards to improve access to and delivery of gender identity healthcare. The aims are to:

• understand the impact of SG’s investment
• understand whether the investment has allowed service redesign that has reduced waiting times and improved quality of care
• support further development by evidencing what good service provision looks like in this field
• highlight barriers and/or supportive factors to implementation of service redesign
• provide accountability of spend

Research approach and methodology

The evaluation adopts a complex systems approach to explore the wide range of impacts the funding for gender identity healthcare improvements has had on processes, people and relationships within and across local healthcare systems. The project comprises a process evaluation, which examines the implementation and delivery of services, as well as a summative impact evaluation, focused on the outcomes of the SG funding on patient care including waiting times, for each of the four adult and one young person’s funded gender identity services. The methodology is based on a comparative case study design to explore the context of the funding interventions.

Data collected for this project includes: (1) a review of the literature; (2) a review of budgets and funding allocations; (3) the development of a Theory of Change; (4) questionnaires sent to GICs; (5) two surveys (one with service users, and one with third sector organisations, GPs and partner organisations); (6) research interviews with stakeholders (including NHS staff, third sector partners and GPs); (7) research interviews with GIC service users; (8) the development of system maps; (9) the development of case studies; and (10) an engagement event with stakeholders.

The Theory of Change was developed to guide this evaluation project. It assesses the current situation within which gender identity services are being offered, the inputs/resources of SG additional funding to support GICs to improve services, and the activities undertaken by Health Boards to improve gender identity services. It also identifies the preconditions required for activities to lead to changes and the system-change outcomes and long-term impacts for patients, staff and other partners.

This work culminated in the development of five case studies: one on each of the gender identity services in NHS Greater Glasgow and Clyde (both the adult services and young people’s services), NHS Lothian (adult services), NHS Grampian (adult services) and NHS Highland (adult services). We have also conducted a comparative analysis setting out similarities and differences in the provision of care and impacts on patients across Health Boards.

Results

This evaluation has found that all the GICs in Scotland are facing significant demand with long waiting lists, creating pressures on staff and adverse outcomes on patient care. There are recruitment challenges and staff shortages across clinics, while existing staff are often on fixed-term and part-time contracts. This has created significant bottlenecks in progressing patients through care pathways. There is an absence of adequate training for clinic staff and the broader NHS workforce caring for trans and non-binary patients. Staff morale and safety has been negatively affected by a climate of fear around this topic, exacerbated by political and media polarisation. Yet despite these challenges, GIC staff are exceptionally passionate about, and committed to, supporting patients and delivering the highest quality care possible. This regularly leads to GIC staff working overtime and taking on additional workloads.

Beyond these commonalities across GICs, we have observed some differences in the implementation and delivery of services as a result of the improvement work, and the impact this has had on patient outcomes. While some of the clinics have been able to utilise improvement funding to develop new approaches to patient care, formalise governance structures around the clinics, attract support from Boards and buy-in from secondary care teams, advance training, hire staff, improve communications with patients and reduce waiting lists, other clinics have been less able to do so. We surmise that differences across clinics are due to several factors, including:

• Level of demand (with some clinics experiencing extremely high and increasing demand, and others facing less demand, due to geographical factors)
• Culture and leadership (with some clinics citing a positive working culture, and others facing challenges due to difficulties recruiting clinical leads)
• Staff capacity and skillset (with significant variation in the number of staff working in clinics, and differences in training and development opportunities)
• Healthcare approach (where GICs occupy different places within local health systems / structures, and there are different care approaches)
• Governance and partnership support (with some clinics seemingly receiving more active support, resources and infrastructure from Boards than others)
• Visibility of clinics (with some clinics receiving disproportionate media coverage, further compounding challenges in staff recruitment and retention)

As a result of pressures facing GICs - notably, difficulties in attracting and retaining staff and keeping up with increasing demand - some clinics have reached points of crisis in being unable to offer adequate or effective services. This has had an adverse effect on service users, who have been subject to lengthy waiting times (of up to five years for a first appointment) leading to a belief, for some, that they will never be seen, or a feeling of being ‘lucky’ if they have been able to access services. In response to long waiting lists, some patients are turning to ‘DIY’ approaches (sourcing hormones themselves on the online or black market and self-medicating, which carries specific risks), seeking to access private healthcare, or going abroad for treatment, all of which may put their own financial security and/or health at risk. Service users have shared, in a survey and interviews, that these risks are preferable to not getting any support at all, which has been associated with poor mental health outcomes in other research.

Best practice learnings

Based on the extensive data collected for this evaluation project, we have developed 17 best practice learnings based on how the SG improvement funding has been used by NHS Health Boards, to help support ongoing and future improvement work and implementation of gender identity healthcare provision. We have separated these learnings across the local (clinic), regional (individual NHS Health Board) and national (SG and all Boards / NHS Scotland) levels.

Local Level

At the local level (gender identity clinic), excellence in gender identity services and patient outcomes is supported by:

1. A cohesive team culture with supportive relationships and clear communications

2. A multidisciplinary staff mix

3. Appropriate grading for staff working in gender identity services

4. A focus on staff safety and clinical oversight

5. Staff wellbeing being strongly supported

6. A continuous improvement ethos embedded in day-to-day operations and

7. Clear communications with service users

Regional Level

At the regional level (individual Health Board), positive outcomes are enabled by:

8. Proportionate clinic workloads (to balance demand)

9. Appropriate sharing of responsibilities for delivering gender identity care across NHS Health Boards

10. Consistent structures and care pathways

11. Collaborative working arrangements with third sector organisations (in delivering wrap-around care and social support, including peer-support, to patients) and partnerships with General Practitioners (GPs)

12. Shared Care Agreements between GICs and General Practice

13. Strong NHS Board leadership and support for clinics

National Level

At the national level, best practice for gender identity services is supported by:

14. Long-term core funding to ensure the sustainability of services and to attract and retain qualified staff through more secure contracts

15. Clear and consistent clinical governance frameworks

16. Staff training and education for clinic staff as well as the broader NHS workforce

17. Strengthening of national networks, such as the National Gender Identity Clinical Network for Scotland, to embed cross-clinic learning, and policy learning to enable exposure to innovative practices and approaches globally

Conclusion

This evaluation contributes to an area of healthcare that remains under-studied and where there is a general lack of high-quality data. In exploring the impacts of SG funding on gender identity services, it has sought to highlight the experiences of staff working in services, who are working under extreme pressure in an area of high and increasing demand, which has received extensive public scrutiny. This project has revealed the dedication that NHS staff have shown in supporting trans and non-binary patients and their frustrations around having insufficient resources to do so as effectively as they would like. It has touched upon the broader societal challenges of the general lack of education and knowledge around gender identity healthcare and the associated stigma. It has also examined the impacts on patients themselves, who often feel isolated, forgotten about, or ‘lucky’ just to be seen by staff. In particular, it highlights the fears amongst trans and non-binary patients in disclosing mental health issues in case their care is (further) delayed and the specific challenges non-binary people face in ‘fitting into’ care pathways that are often binary. Finally, it has examined the extreme pressures facing young people’s services, due to increasing demand, challenges of staff recruitment and retention, and negative publicity.

The final period of this evaluation project has coincided with the publication of key documents that will help to address some of these issues - including the Healthcare Improvement Scotland (HIS) Gender Identity Healthcare Service Standards for adults and young people, the updated Gender Identity Healthcare Protocol, the Transgender Care Knowledge and Skills Framework, and the development of rigorous data collection and monitoring of waiting times with first publication of official statistics in development of gender identity services waiting times for first outpatient appointment by Public Health Scotland (PHS), which is the first of its kind in the UK. The best practice learnings detailed in this report provide further evidence to complement these new initiatives around good service provision in gender identity healthcare, which may lead to ongoing and future service improvements to support patient care.