More than two decades ago, nurse Liz Hills had a moment that would transform her career. A surgeon Liz was working with invited her to observe gender affirmation surgery at Charing Cross Hospital. “I met a wonderful patient who told me her story. It had such a profound effect on me,” Liz says. “The way that she was treated in the systems, by her family and by the general public was quite a horror story and it stayed with me.”
Liz took time out to have children, but when she returned to nursing in Brighton in 1998, she was happy to discover that a surgeon nearby, at Nuffield Health Brighton Hospital, was a pioneer in gender affirmation surgery. “I started training with the specialist nurse there and felt like I had come home,” she says.
Now, Liz is a clinical nurse specialist, working with transgender and non-binary patients accessing gender-affirming care. She works as part of a multidisciplinary team, liaising with gender identity clinics (GICs), psychiatrists, surgeons, GPs, social services and nursing teams. “A strong network is vitally important in the care of patients with gender dysphoria,” she says.
Growing waiting lists
Nurses like Liz, and services like the one she works in, are in high demand. There are only seven NHS gender dysphoria clinics in England and a handful across Scotland, Northern Ireland and Wales. The latest statistics from the NHS Tavistock and Portman Gender Identity Clinic reveal a waiting list of nearly 11,000 people for their clinic alone, translating to waiting times of four years. This is a fourfold increase on the waiting times reported by our members in 2018.
The National LGBT Survey published in 2018 found that 80% of trans and non-binary people who accessed or tried to access gender identity clinics said the experience was difficult, with long waiting times cited as the most common barrier.
This is reflected in Liz’s observations: “The reality is that waiting times throughout the UK can be between three and seven years.”
Laura Mita is a gender specialist nurse at the private Parkside Hospital in London, which offers gender-affirming surgeries. She has worked in this area of nursing for five years and has also noticed the growing waiting lists – she says at least one of her patients reported waiting 10 years. “The waiting lists are now really long,” Laura says. “I’ve got patients who are really, really distressed.”
At RCN Congress 2022, nursing staff discussed the urgent issue of access to care for transgender and non-binary patients. Increased investment in gender identity clinics and specialist nursing staff is needed to better serve this patient group.
Mental health impact
Both Laura and Liz have seen patients resort to desperate measures when faced with long waits to access a GIC appointment. “Patients want to start on hormones, but if they can’t access a gender identity clinic to see an endocrinologist because the waiting list is really long, some of them will start self-medicating,” says Laura. This can mean buying hormones online and taking them without medical supervision: “This is really dangerous. There can be serious problems like myocardial infarction or stroke.”
Liz says: “The reality of patients waiting for treatment and support is a decline in their mental health, resulting in self-harm and possible suicide.” In 2018, a report from Stonewall, LGBT in Britain: Health Report, revealed that 67% of trans people had experienced depression in the previous year, while 46% had considered taking their own lives.
There is no set pathway for gender dysphoria. It is up to the individual how to proceed
In Liz’s expert opinion, as well as tackling waiting lists with a greater number of specialist clinics and the staff to work within them, we also need to improve knowledge among staff in all health care settings. “We need to ensure clinicians have confidence, and that it is an established area of care within the NHS,” she says. “There should be clear training pathways for people who wish to practice in this area. We need to address the stigma that has been historically attached to gender care like it’s not here to stay, which it is.”
Despite the long waiting times, with the right knowledge, nursing staff in every setting can play their part to support transgender and non-binary patients. General practice is the first point of contact for many patients, before they are referred to a GIC. “Nursing staff working in general practice should have some formal training in the care of transgender patients,” says Liz. “Often, it’s the patients that do the teaching. More care in the community is required.”
There are some common misconceptions about transgender people and the care they need. Stonewall’s 2018 health report found that 62% of trans people said they’d experienced a lack of understanding of specific trans health needs by health care staff. “Most people think that the vast majority of patients will proceed to surgery, but many do not,” Liz says. “There is no set pathway for gender dysphoria. It is absolutely up to the individual as to how they proceed.”
The NHS defines gender dysphoria as “a sense of unease that a person may have because of a mismatch between their biological sex and their gender identity”. Some people mistakenly think that gender dysphoria is a mental health issue – this is not true. However, it can lead to significant mental health issues, which can be exacerbated by excessive GIC waiting times.
Laura says: “This feeling of unease may be so strong that it leads to harmful outcomes for the individual such as anxiety, depression or more severe manifestations such as self-harm. Some people seek to change their bodies to resemble more closely the gender with which they identify, which may not be a binary gender.” Not every transgender person experiences dysphoria, but for those who do, medical and surgical intervention can be transformative.
Nurses like Liz and Laura play a vital role in the pathway to surgery, discussing options in detail and making sure each patient makes the right decision for them. It’s a holistic role, says Laura: “You need to connect with your patients and support them emotionally.”
Improved knowledge of gender dysphoria among nursing staff would benefit patients, Liz explains, and ideally nurses would be taught about gender diversity during their university training. Staff in all settings should receive ongoing training on the topic too. “Patients will be seen in all areas of the hospital setting,” Liz says. “We currently train our staff, including reception, housekeeping, catering and anybody who comes into contact with our patients.”
In January 2016, the House of Commons Women and Equalities Select Committee published its Transgender Equality report, which found: “Trans people encounter significant problems in using general NHS services, due to the attitude of some clinicians and other staff who lack knowledge and understanding — and in some cases are prejudiced. The NHS is failing to ensure zero tolerance of transphobic behaviour.”
A warm welcome
When caring for gender diverse patients, there are a few simple things nursing staff can consider. “The beginning of good care for any trans or non-binary patient is a warm welcome,” says Laura.
“Ensure handover sheets have patients’ first names on,” Liz says. “Ask your patients how they would like to be addressed, they will not take offence.” Laura echoes this: “It only takes a few seconds to use your clinical judgment and interact appropriately with the patient. This can make the difference between making the patient comfortable or having them leave the clinic.”
Certain health care settings are currently gendered. “Those who identify as female should not be placed on an all-male ward,” says Liz. “Ensure when room allocations are done, these patients are placed in a side room if possible. There needs to be more exceptions and flexibility around where to place a patient.”
Nursing staff should also familiarise themselves with their patient’s medical history, ensuring that they are receiving appropriate care – for example, trans men who have a cervix or breast tissue should be invited for relevant screening.
There needs to be reform to improve early diagnosis of gender dysphoria, with easier access to HRT and blockers
But most of all, Liz says, action must be taken to cut waiting times for GICs. “It’s possible that GP surgeries could play a role,” she says, for example, by referring patients to GICs and monitoring patients who have been prescribed hormones.
“Training for GPs is extremely important. I can’t tell you how many times a GP has stated when asked for help with their patient that it's not in their realm of expertise,” Liz says. “There needs to be some reform to improve early diagnosis of gender dysphoria, with easier access to HRT and blockers.”
Although there is still a long way to go, Liz has seen some improvements in the way that trans people are treated and the care that is available to them. “When I started many years ago, there was a diffused lack of knowledge amongst the medical profession. GPs were often reluctant to treat or help their patients, whether that was from a lack of knowledge or transphobia, it existed far more than it does today,” she says.
“We have a much better understanding of the gender spectrum now. Patient gender expression has changed. Patients may not want their gender to define them. I for one think that in this progressive society, it is right that people can state they do not want their gender to define them.”
Myth-busting: gender-affirming care
What do gender identity services offer?
The NHS commissions clinics that provide holistic care for transgender and non-binary people. This care includes psychological support, voice therapy, hormone therapy, and diagnosis of gender dysphoria. They may prescribe cross-sex hormones (for those over 16) and offer surgery (for those over 18).
What does the gender-affirming surgery care pathway look like?
Patients generally speak to their GP or practice nurse first. They will then be referred to a gender identity clinic. From here, they can begin to take steps towards gender-affirming surgery, if this is what they want. They must fulfil the following criteria before they can access gender-affirming surgery:
- persistent, well-documented gender dysphoria
- be aged 18 or over
- have capacity to consent to treatment
- no significant mental health concerns
- have received at least 12 months of continuous hormone therapy
- have spent at least 12 consecutive months living in the gender role congruent with their gender identity.
What gender-affirming surgical procedures are available in the UK?
For patients who wish to progress to surgery, a number of procedures are available, some via the NHS and some that must be sought as a private procedure:
- vaginoplasty and vulvaplasty
- phalloplasty and scrotoplasty
- mastectomy and chest reconstruction
- breast augmentation
- facial feminisation surgery.
Nursing staff help their patients understand what each procedure involves and what the recovery process might look like.
Fair Care For Trans and Non Binary People is an RCN publication designed to help nursing staff respond to the care needs of their trans and non-binary patients. It contains more information about the medical side of transition, treating patients with dignity and respect, and a collection of further reading and resources.