The Committee held an outreach event to hear from LGBT people and their experiences in health and social care. Participants included people with a range of sexual orientations and gender identities, and were recruited through open recruitment, with anyone able to sign up. The discussion was facilitated by the Committee Chair and Jess Phillips and anonymised notes were taken of the discussion.
A trans bisexual man living in London commented that he had arrived from the US 12 years ago and has accessed healthcare in multiple ways. He said: “The ‘B’ [bisexual] has made no difference.” But he said he was still on waiting list to be assessed or the gender identity clinic. He said: “My primary care provider is fantastic. They have other trans patients, but I may be the first trans man. They have been incredibly supportive but I understand from, for example, online forums that that is the exception rather than the rule.”
A gay cisgender man talked about his experience with HIV services. He said that best practice could be found in London, but that outside London, the situation was “appalling”. He attributed this to the high numbers of gay men living in London, leading to more experience in the NHS and the existence of specialist charities. He also spoke of the stigma, which he believed was increasing, saying that doctors ask: “why have you got this, are you not smart enough, are you engaging in risky behaviour?”
A trans man compared the treatment he received for a broken ankle, where he had a great experience, to his treatment for lower surgery. For the latter, he was placed in a women’s ward by the nurse, only to have this questioned by the doctor. He said “People feel a right to treat you differently as the rules don’t apply to us.” He also commented that he had been spoken to in a discriminatory and offensive way, with phrases such as being told he would go to hell and that he would be prayed for. He commented “training alone isn’t going to deal with that–it’s their core belief”.
A trans woman spoke about the fact that she has a rare genetic condition. She said that when she goes to a new GP and speaks to them about this, she is always given the prescription she requires. However, she said that when she tells the GP that she is trans and needs a hormone prescription (which she has been taking for a long time) the GPs get confused and are unwilling to prescribe. She considered this to be a double standard.
Another trans man, based in Yorkshire, spoke of the frustration he felt at having to wait for his referral to the gender identity clinic. He said he felt “left” trying to deal with his business, his marriage and his three step-children. He said: “I made a drastic decision to create my own pathway–I ordered testosterone off the internet. I spoke to GP and was honest–the GP didn’t condone but said it [the testosterone] appears to be real, did my blood tests so I had a baseline. The decision was mine. It was a very positive experience.” He also paid to see a private psychiatrist, but could not afford this long-term. He said that, while his GP was doing their best, “The GPs are terrified because they have no experience. They were not trained in medical school though this starting to change. A good experience with a GP is them saying–look I don’t really know what I’m doing, but come and see me in a week.”
A trans woman from the south west also had a difficult experience with GPs and hormone treatments, having come out of an abusive relationship where her partner had prevented her from taking hormones. Her GP tried to get advice from the gender clinic, but they refused to advise without seeing the patient themselves. The GP decided that this was unnecessary, as the trans woman had transitioned years earlier. The GP prescribed the hormones without support, despite his reservations.
A gay cisgender woman from a local charity commented that suicide rates for trans people are very high. As an organisation, they started to provide workshops to try to support people during their long wait for a referral.
Another trans man from north London spoke of his experience trying to register at a new GP surgery. He thought he had registered successfully, but later found out that they were waiting for a deedpoll to confirm his name change. Even after he provided it, they stated that this was not a legal document and would not accept it.
A trans woman said that she had had a similar issue, with her former name being put next to her current name on her records. She felt she had to change surgeries. She also spoke of discriminatory treatment, saying: “Another professional said they don’t want to treat people like me, was told how much money spent on me and told that NHS money shouldn’t be spent on me”
Another trans man, from Yorkshire, had to have emergency surgery and spoke of an experience where a nurse asked him questions that, on reflection, he thought were inappropriate regarding his medical transition. He commented: “She asked professionally and I was vulnerable so I answered - later I felt violated”.
Another trans man spoke about trying to access mental health services and A&E. He said that some NHS staff use transphobic and homophobic slurs, which he was able to hear on the ward. This made him feel unsafe as an LGBT person. He said that this was especially acute in one hospital: “I am talking about stuff like nurses talking about killing gay people … the hospital was terrified to have this talked about, [to have it known] that it was happening in our city”.
A gay cisgender woman stated that she had a good relationship with her GP, who she found respectful and supportive. But she also found that there were assumptions made by medical staff around her sexual practices. She stated: “I went for smear test and when I mentioned sexuality the nurse basically stopped the test and said, ‘you don’t need it’. It wasn’t expressly homophobic and a few follow up questions but was clear I didn’t need it. Then got a follow up saying I need it–so I went back and receptionist told me the same thing!”
A straight trans man spoke about how he was misidentified by NHS staff. He was referred to as a virgin, as he has never had penetrative sex with a man and was also told that he did not require a cervical smear.
A cisgender lesbian woman spoke about how it was unclear whether a lesbian partner would be welcomed on a hospital ward and whether affection would be acceptable. She said that this depended on the ward and who the chief nurse was. Another lesbian concurred with this assessment, saying that she was questioned: ‘why are you here, we don’t do that, we don’t have your kind here’.
There was general consensus that the group had not come across any practices that were especially good for LGBT people. A straight trans man commented that some sexual health services in Yorkshire were good because they were commissioned out to a local charity. A cisgender gay man commented that there was a similar service in London, but that people “order things off the internet”. He commented that: “we have seen hands off referral from GPs”.
A straight trans man commented that, because his GP is LGBT, he felt comfortable with him. This was echoed by other participants. Another participant commented that they had had good experiences where the medical staff concerned were specialist in a particular area.
The group stated that they use networks to identify good GPs, from lists that are circulated online between the communities. One participant said that: “If I meet an LGBT person from my area I recommend my surgery”.
A trans woman stated that having satellite clinics rather than single gender clinics would take the pressure off them and would give patients a “bridge” as they are waiting for their appointments with gender clinics.
There was disagreement among participants over whether specialist services were needed for LGBT people or whether mainstream services needed to be more inclusive. One participant commented: “I don’t prescribe to ghettoization. [All staff] need to be given mandatory training [in LGBT issues].”
It was generally agreed that perceptions of LGBT people (especially trans people) among medical professionals need to change. One participant suggested that there should be “LGBT champions” in medical settings.
Another participant spoke about how difficult it was to challenge problems when they arise, saying “we are expected as patients to complain but don’t always have strength or time … lots of this is left to charities”.
Two of the participants in this session opened by performing a poem entitled “Lesbian Loneliness” that dealt with a woman living in a care home. The participants commented that the message of the poem was that people “go through life as if they have something they didn’t want others to know. it is particularly the older people.”
When the poem was concluded, the participants stated that they were taking these sorts of performances into care homes. One cisgender woman who presented stated: “Care homes must fall over backwards to show they are LGBT friendly. They must do this so we can know our end of life care is in safe hands. At the moment it isn’t. CQC are masking this; they must find out how many LBGT people there are in care homes.”
One of the participants runs a home care services for LGBT people. He spoke about how his service tries to match the user with LGBT and non-LGBT staff, as appropriate. He spoke about he wants his service-users to feel: “People are safe and they know no one is going to judge them”.
One participant spoke of the problems that LGBT people can have in later life, focusing in on trans people. She said: “especially late in life trans people who get dementia, their memories of themselves are not necessarily the same and they don’t necessarily remember they have transitioned–the care system doesn’t know how to cope.”
One participant spoke of a local care home that was very explicit in its inclusion of LGBT people, using rainbow symbols and t-shirts with slogans that make it clear that LGBT people were welcomed and respected. The participant said that this was due to one person who had “sold the idea” to the care home. In addition, she said: “in brochures they have pictures of people in same sex relationships and they have an LGBT champion”.
One participant felt that there should be LGBT-specific care homes, stating, “need and demand is high”.
One participant, a trans gay man, spoke of his fear of having to go into a care home, seeming to prefer death over going into care. He said: “my biggest champion is my husband and there’s a history of early onset dementia in my family. All my family are back in US. If my husband goes first, and the choice is a care home here or returning to US, I’m not sure I want to be around.”
Some participants raised the issue of “next of kin” in care settings. One participant stated that “England, Wales and Northern Ireland you have to live with a partner for 5years before you can be considered next of kin–biological family takes precedence. In Scotland you can nominate someone–that is so important to our community”.
Another participant stated that, near the end of life, some trans people find that their families are so unsupportive of their gender identity that they “transition people back”. Another participant mentioned that in California, legislation has been introduced that, if a trans person has a living will, families are unable to de-transition them. There was general discussion that there should be a legal mechanism available to help people to set out their wishes around their sexuality and gender identity as they age.
Published: 22 October 2019