Whole system change needed in gender identity services

Gender identity services in the NHS are failing to meet the needs of patients. Huge delays in treatment are forcing many to go private or abroad, while a lack of funding and suitably trained staff means patients are not receiving adequate care.

Gender dysphoria is a condition whereby a person experiences discomfort or distress because there is a mismatch between their biological sex and their gender identity (NHS Choices, 2016). Figures estimate there are 650 000 people in the UK living with gender dysphoria, which is equal to 1% of the population (Women and Equalities Committee, 2016). This is expected to rise as society’s increasing tolerance and acceptance of transgenderism has encouraged more people to come forward and seek medical help.

In the UK, transgender people’s health needs regarding gender dysphoria are being met at specialised NHS gender identity clinics or through private care. At present, all GPs in England, Northern Ireland and Scotland may refer their patients directly to a gender identity clinic, and do not need to refer them to a mental health service for assessment beforehand. In Wales, however, GPs have to refer first to a local psychiatrist, who assesses the patient and can recommend they are referred for assessment and treatment at a gender identity clinic (General Medical Council (GMC), 2017).

Unacceptable waiting times

Waiting times for people with gender dysphoria before their first appointment at an NHS gender identity clinic are unacceptable, as are the times for subsequent gender reassignment surgery, should it be wanted. This, in turn, has a massive impact on the health and wellbeing of trans patients. According to the GMC, the risk of self-harm and suicide for trans people is much greater than in the general population, and any delays in accessing medical care can substantially increase these risks (GMC, 2017).

Under the NHS Constitution, patients are legally entitled to have their first appointment at a specialist service within 18 weeks of referral (Department of Health, 2015). However, due to increased demand, some transgender patients have found themselves waiting up to 4 years for an appointment (Lyons, 2016). Remarkably, it was only in January 2015 that the NHS accepted that the 18-week principle applies to gender identity services too (Women and Equalities Committee, 2016).

It is because of these long waiting times that many trans people are turning to private care—but this does not come cheap. Initial appointments can cost between £220 and £280, and tend to cover assessment, diagnosis and recommendations. It is generally after two appointments that hormone therapy is started.

The cost of gender reassignment surgery varies considerably and prices range from £10 000 to £20 000. In desperation, many are turning to far-flung destinations, such as Thailand, to have this surgery.

Things need to change

In an attempt to meet the increased demand on gender identity services, NHS England invested an additional £6.5 million in this area this year. It is hoped this will go some way to reducing waiting times. However, despite increased funding, there is no detracting from the stark truth that the NHS is letting transgender people down. Notably, according to a Government report on transgender equality, the NHS is ‘failing in its legal duty under the Equality Act’ (Women and Equalities Committee, 2016).

A lack of knowledge and understanding among many clinicians and staff within the NHS has meant transgender people all too often encounter significant problems, whether through prejudice or the provision of inappropriate care. Additionally, other commonly cited concerns include too much variation in clinical protocols, confusion about what is available in the NHS, and inequitable access arrangements (Women and Equalities Committee, 2016).

Following this report, NHS England asked its Clinical Reference Group for Gender Identity to make recommendations on new service specifications for these specialist clinics. This led to a 12-week public consultation on proposals for new service specifications that, if adopted, will describe how specialised gender identity services for adults will be commissioned and delivered in the future within England. The final decisions will be made at the end of autumn 2017.

Relationship between public and private services

Among the changes set out in the consultation include a proposal that only designated specialist gender identity clinics will be able to refer individuals for reassignment surgery in the NHS. This would mean other NHS professionals or private clinics would not be able to make the referrals. The decision was made because it is felt the multidisciplinary teams of gender identity clinics are best placed to consider an individual’s suitability for surgery in the context of the relevant medical, psychological, emotional and social issues (NHS England, 2017). They are also able to accurately gauge the likely range of risks in each case.

Unfortunately this means patients would be unable to begin down the private pathway of care for an initial assessment and diagnosis, before moving to the NHS for gender reassignment surgery. Though this would go some way to diverting pressures on NHS services, it could be argued that boundaries of care between private and public could be blurred, making it difficulty to ensure safety and quality of care. Equally, referrals to an NHS gender clinic would have to come through an NHS pathway.

A gender identity specialism is needed

The lack of suitably trained staff to take on specialist roles being created in nursing, medicine, psychology and other professions is one of the key reasons for unprecedented demand on gender identity services. There are under a dozen people in the UK working both privately and in the NHS who can carry out vaginoplasty or phalloplasty operations (Parkins, 2016).

With the above in mind, there have been discussions with Health Education England, the GMC and the Royal College of Physicians about the development of a gender identity specialism, supported by appropriate curricula and recognition. It is evident that this is sorely needed; however, even at a grassroots level, training for GPs is insufficient, consisting of two online educational modules on gender variance on the Royal College of General Practitioners’ website. Without a proper understanding of this patient population, health services cannot begin to address their needs.

Conclusion

While momentum for change is gathering and the Government is beginning to listen, anything short of a whole system change in gender identity services would be insufficient. Waiting times are the most pressing concern that need to be addressed, with demand and capacity out of balance. Quality indicators are needed to assess quality and benchmark providers; a better interface with primary care services is essential; and increased understanding and knowledge across all health services is paramount. Transgender people have just as much right to care as anyone else, and health services and professionals cannot let them down.

References

Department of Health. NHS Constitution for England. 2015. http://tinyurl.com/d7sa3wq (accessed 23 October 2017)

General Medical Council. Good medical practice. Trans healthcare. Treatment pathways. 2017. http://tinyurl.com/grugw8z (accessed 19 October 2017)

Lyons K. Gender identity clinic services under strain as referral rates soar. 2016. http://tinyurl.com/hcb9uzz (accessed 19 October 2017)

NHS Choices. Gender dysphoria. 2016. http://tinyurl.com/ybt7rbj7 (accessed 19 October 2017)

NHS England. Guide to consultation: specialised gender identity services for adults. 2017. http://tinyurl.com/ydg3pfmh (accessed 19 October 2017)

Parkins K. Meet the gender reassignment surgeons: ‘Demand is going through the roof’. 2016. http://tinyurl.com/hdblcpg (accessed 19 October 2017)

Women and Equalities Committee. Transgender equality: first report of session 2015–16. 2016. http://tinyurl.com/y8sftc2h (accessed 19 October 2017)

Taken from Journal of Aesthetic Nursing, published November 2017.