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'The lack of medical support is a travesty': Trans people facing five-year healthcare waiting list

On Transgender Day of Visibility, Teni CEO Éirénne Carroll talks to The Journal about access to healthcare in Ireland and worrying developments in the US.

File photo of a mother comforting her child
File photo of a mother comforting her child
Image: Shutterstock/Ilike

SOME TRANS PEOPLE are facing a five-year waiting list for healthcare, according to the Transgender Equality Network Ireland.

Teni has consistently raised concerns about issues facing members of the trans community in Ireland when trying to access healthcare.

Last month the organisation warned that children are being referred to a healthcare service that “doesn’t exist yet“, as previously reported by The Journal.

A long-awaited report on transgender healthcare published in December made a number of recommendations including that psychological support for those under the age of 18 should be provided and delivered by the Irish health service, rather than in the UK as was previously the case.

However, until this service is up and running, Teni CEO Éirénne Carroll said the patients in question will “be re-referred back to the Irish new service, which does not currently exist”.

Meanwhile, trans adults are travelling abroad for surgery they can’t access in Ireland.

One parent who wished to remain anonymous has said “Ireland’s absolute lack of medical support is a travesty; it’s an attack on trans youth and their families”.

“Citizens are not being educated, creating the false belief that transgender youth are invalid and less than, and ignorance leads to hate.

“Ireland needs to grow past their stoic, religious and dependent thinking, and show progression and advancement regarding the medical needs of transgender youth,” the parent said.  

Speaking to The Journal, Carroll said: “There has been no movement or addressing clients on the waitlist since December, causing many of the numbers to grow as referrals and processing of referrals is slowing.

“We also have learned that the National Gender Service, while stating that new staff is being hired and the service expanded, care for patients has slowed and the waitlist has now grown to three years for new referrals.”

Carroll said the adolescent and adult healthcare services for trans people in Ireland need to be integrated.

“Currently there are two distinct waiting lists and there’s two distinct processes or service for trans people in Ireland,” she said.

As a result, teenagers may spend two years waiting for treatment as an adolescent then when they reach 17 and are transferred over to the adult service, face an additional three-year wait.

“We’re asking 15 to 17-year-olds to possibly wait five years for access to healthcare services which really increases the mental stress on any trans individual. Any individual who has to wait five years for a healthcare service is going to be in a state of stress because there’s no plan, there’s no next step.

“The approach of ‘we may get to you, but it’s going to take so long’ consistently wears on you, especially for trans youth and trans adolescents who are of the age where they can start to see physical changes, it’s going to increase their distress, while they’re also being delayed access to healthcare.”

Self-harm and suicide rates are much higher in the trans community than in the general population.

2020 deadline missed

In Ireland healthcare for young trans people is delivered at Children’s Health Ireland (CHI) in Crumlin Hospital, while adult services are delivered at the National Gender Service (NGS) in St Columcille’s Hospital (SCH) in Loughlinstown in Dublin.

Patients receiving treatment in Crumlin previously received psychological services via the Tavistock clinic in London, which was funded by the HSE’s Treatment Abroad Scheme.

Tavistock’s contract with the HSE ended late last year and is not due to be renewed.

Carroll said the HSE knew the contract was coming to an end and should have had measures in place to deal with the impact this could have on patients.

“According to the LGBTI+ Youth Strategy, a multi-disciplinary service for children and adolescents was meant to be established by December 2020. There was always this expectation that the contract was going to end with Tavistock, and that by 2020 we’d have our own service here.

“And yet, we got to December, and issues came up and there was no multidisciplinary team. It’s unfair to say that because of something that happened abroad the service is ending, when the people involved in the process knew the service would be ending (for other reasons).”

The LGBTI+ National Youth Strategy 2018-2020 was published by the Department of Children and Youth affairs three years ago. The document set 2020 as the year by which “appropriate resources” would be available to trans children and teenagers “in order that the HSE Service Development model of care is implemented and accessible to support trans young people”.

“These services should include the provision of appropriate mental health services at primary and specialist services,” the document notes.

Access to trans healthcare was raised by Sinn Féin’s Spokesperson on Health David Cullinane in a number of recent parliamentary questions to Health Minister Stephen Donnelly which were referred to the HSE.

In response, Thomas O’Brien, General Manager of Mental Health Services at the HSE, confirmed that the HSE is “working on the establishment of a child and adolescent service in Ireland with a CAMHS Consultant post recently approved with the recruitment process underway”.

“It is important that the care pathway applied to children and adolescents is compatible with the adult service to which they are likely to transition, in order to provide a comprehensive, sensitive and safe service for these young people,” O’Brien said.

CHI at Crumlin is seeking a replacement Consultant Paediatric Endocrinologist who will be part of this team and interviews were due to place earlier this month but did not.

The Journal sought to clarify when this position will be filled but CHI at Crumlin had not replied to a request for comment at the time of publication.

In a letter to Cullinane, Joe Gannon, Chief Operations Officer at CHI, wrote that the HSE is “working on the establishment of a team and service in Ireland”.

Over 600 people on waiting list

In the last five years adult referral rates to the NGS have increased significantly resulting in large increases in waiting times.

In relation to trans adults having to go abroad or surgery, a spokesperson for the NGS told The Journal: “There is currently no public sector provision of gender affirming chest or genital surgery in Ireland. The National Gender Service currently refers people seeking gender affirming surgery to specialist centres in the rest of Europe with funding support provided by the Cross Border Directive or the Treatment Abroad Scheme.

“In the National Gender Service, our goal is to have surgical services available in the public system in Ireland. However this will require additional resourcing from the HSE.

“Due to the specialist nature of this type of surgery and the competencies required to support it, specialist multidisciplinary input and specialist training will be required to establish gender affirming surgical services.”

There are currently over 600 people on the waiting list for the NGS, and this number is expected to grow “because of the ongoing increase in demand”.

The current waiting time for services at the NGS is between two and two and a half years.

“This has continued to increase as the number of referrals received continues to exceed capacity. In line with international experience, there has been more than a 10-fold increase in referrals over the last 10 years.

“To address this, the National Gender Service has submitted a number of business cases to the HSE for additional staff in order to bring down the waiting time. These business cases are being considered. If approved, we can then start recruitment of additional staff which will help us to reduce waiting times for the service,” the spokesperson said.

They added: “Following initiation of a care pathway in the National Gender Service, people attend us for review until such time as their medical transition is well established without complications.

“We currently offer over 1,000 review appointments per year. Once a person’s medical transition is well established, and specialist support is no longer required, then they are discharged back to their GP for ongoing care.”

Puberty blockers

There has much debate in recent months about puberty blockers – medication used to postpone puberty in children – which are sometimes prescribed to transgender teenagers.

Last week the UK High Court ruled that parents can consent to their child being given puberty blockers without applying for a court’s approval.

The recent judgement came on foot of a high-profile case late last year which questioned whether or not teeangers could fully consent to taking the medication given their age.

Last December, the UK High Court ruled that under-16s can only consent to puberty blockers if they can “understand the nature of the treatment”.

The case last year was brought by Keira Bell against Tavistock and Portman NHS Trust, which runs the UK’s only gender identity development service for children.

Bell, a 24-year-old woman who began taking puberty blockers when she was 16 before “detransitioning” in her early 20s, argued that children cannot properly consent to the treatment.

Last week’s ruling has been welcomed by trans advocacy groups. Activists have said that the small percentage of people who detransition should be supported to do so, but the experiences of a minority should not prevent a larger number of people having access to necessary healthcare.

When asked about puberty blockers, Carroll noted that this type of treatment is not new and has been available for over 30 years.

“The use of puberty-blocking medication should follow the international best practice and protocols in place that recommend a full multi-disciplinary team and six assessments.

“Even more, in relation to the Bell case, we have seen that a recent decision has affirmed that parents can give their consent on behalf of their children, a decision we hope will positively impact trans youth healthcare.”

image1 Teni CEO Éirénne Carroll Source: Teni

Carroll said a worrying aspect of recent discussions on the subject is “this prevalent idea that trans youth don’t exist”.

“What we’re seeing is this disbelief that trans youth really are who they say they are. And that is a horrible belief to put in place, telling someone that they are not who they say they are. Trans kids are exactly who they say they are and they deserve to be respected.

“I’m a trans adult, a trans woman, and I also had the same experiences and the same gender dysphoria when I was a teenager, but I wasn’t allowed access to healthcare, so it’s been a part of my entire life.”

‘Worrying trend in US’

On Monday, the Arkansas Senate passed a bill Monday that would ban access to gender-affirming care for transgender minors, including puberty blockers and hormones.

If the bill is enacted, it would prohibit doctors from providing gender confirming hormone treatment or surgery to minors, or from referring them to other providers for the treatment. It also allows private insurers to refuse to cover gender-affirming care for trans people of any age.

The bill that has been widely criticised by medical and child welfare groups, but Arkansas’ Republican governor Asa Hutchinson is expected to sign it into law this week.

Conservative legislators in the US have introduced more than 80 bills restricting trans rights so far in 2021 – with some states already banning children access to certain sports teams.

Carroll is originally from the US and described this legislative trend there as “very worrying”.

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She said debates on access to sports and which toilets people are allowed you are “clickbait” and “straw man argument” used by certain groups to “stoke fear”.

“Trans people across society just want to live a life of peace, and to enjoy their own life and their own hobbies. And yet we’re seeing some political organisations stoke fear, or try to gain support, by making issues out of things that aren’t really issues and don’t actually affect people.”

Carroll said trans youth who do have access to affirming healthcare “are not at an advantage against any of their cisgender counterparts”, and banning them from taking part will put even more pressure on their mental health.

She said efforts in the US to deny people access to healthcare are particularly worrying and – as well as the obvious impact it will have on trans-affirming service – could have a dangerous impact on trans people accessing other types of healthcare.

“If legislation is passed that allows people to deny health care according to a religious belief, how does that work across the board with so many other things like access to surgery, access to basic healthcare?

“If a hospital takes a position based on religious beliefs, are they then going to be allowed to turn away trans people from any care at the hospital? For example, if someone comes to an emergency room, and a doctor finds out it’s someone who’s trans, does the doctor have a legal right to deny emergency care to someone, just based on their religious beliefs?

“It’s much wider than access to trans-affirming healthcare, it’s a bigger issue when it becomes linked to religious liberty.”

Transgender Day of Visibility

Today is International Transgender Day of Visibility – an annual event on 31 March dedicated to celebrating transgender people’s achievements and raising awareness of the discrimination they face.

Carroll noted that today is one of two international awareness days dedicated to the trans community.

The second such date, Transgender Day of Remembrance, takes place on 20 November and is dedicated to transgender people whose lives were lost in acts of anti-transgender violence – a figure which is increasing in the US and other countries.

“In November we come together and it’s a very sad day. We have to mourn family or friends that we’ve lost to violence related to transphobia, but today has a two-fold purpose, it’s both pride and a protest.

“It’s supposed to be a day where we celebrate the resilience of our community, celebrate the achievements that trans people have made and the fact that despite mounting challenges, we won’t be erased and we’re still here.”

Carroll said today also presents an opportunity for cisgender people, those who identify with the gender they were assigned with at birth, “to support us and advocate for us while we’re still here”.

Carroll said allies need to “call out transphobia” whenever they encounter it.

“If you know a trans person, you know that they’re facing both micro and macro aggressions every day. Especially on March 31st, make sure that you’re calling into question why discrimination exists and are looking at ways to support and amplify the voices of the trans people around you.”

More information on Teni and support services can be read here.

About the author:

Órla Ryan

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