Public mental health services in the UK are failing to adequately support people who are living with HIV due to a lack of knowledge and understanding about the virus, a new report has found.
The study, which was conducted by the National AIDS Trust and was published on Thursday (21 October), investigated the effectiveness of the Improving Access to Psychological Therapies (IAPT) services for those living with HIV. The IAPT programme, which was launched in 2008, has “transformed the treatment of adult anxiety disorders and depression in England”, according to the NHS.
However, the National AIDS Trust’s new research shows that the service is failing many people who live with HIV – many of whom face a specific set of stigmas and mental health issues not experienced by the wider population.
In fact, people who are living with HIV are twice as likely to have depression or anxiety than the general population. More than one third of those who contract the virus later go on to receive a diagnosis for a mental health condition.
The National AIDS Trust asked people who are living with HIV and who had direct experience with IAPT services to share their experiences – and the results show the chasm that still exists in mental healthcare for people who have the virus.
Two in five respondents said their mental health did not change as a result of therapy they received through IAPT services. One in 10 said their mental health had gotten worse.
Notably, four fifths of respondents said their mental health issues were specifically related to living with HIV, while a third said their therapist did not understand the ways in which a HIV diagnosis can impact on a person’s mental health.
One quarter of respondents said their HIV status had impacted negatively on the way they were treated by IAPT services, while three quarters said their experience could have been better.
Overall, less than half of all respondents said they would be happy to use IAPT services again in the future.
Mental health services failed to address the ‘underlying problem’ for gay man with HIV
Eugene Lynch, 38, is one of the many people living with HIV whose experience of mental health services fell short. He was diagnosed with HIV in 2013 after he developed shingles alongside cold and flu-like symptoms. While he knew that HIV was no longer a death sentence, he was still filled with fear about what people would think of him.
“I had a lot of preconceptions about HIV and stigma,” Eugene told PinkNews. “I was really worried about being open with my status.”
Eugene had been experiencing issues with anxiety for some time prior to receiving his HIV diagnosis – however, his mental health took a nosedive after he found out about his status.
“Over the course of five years, after not really seeking help for my mental health, things deteriorated to a point where I was having panic attacks all the time. I couldn’t leave my house without having a panic attack. I wasn’t able to go to work anymore. I had to go to my GP and say, ‘This has gotten really serious and I need some help.’ That’s how I was referred to the NHS mental health services.”
From the start, Eugene felt that the NHS mental health services weren’t able to see the full picture of his condition. He was drinking heavily at the time and taking drugs as a coping mechanism, which “complicated” his treatment further.
“When I went to speak to the mental health support they did the standard thing where they do a questionnaire, they figure out what your diagnosis is and what support you might need,” Eugene explained.
“They really focus on, what problem do you have right now that you need the most help with? For me it was panic attacks. I couldn’t be around other people because of my fear that they would think I was ill. The effect that would have on my body is that I’d get really sweaty, I’d hyperventilate.
“What the mental health support services did was they said, ‘OK, we’ll focus on working on reducing the frequency of the panic attacks but also we’ll give you some coping mechanisms to make them less severe or prevent them from happening in the first place.'” It was helpful, but it wasn’t really addressing the underlying problem.”
Eugene was also afraid of being “upfront” about his HIV status with his therapist as he wasn’t sure if they would be understanding of what that meant.
“The other thing I had a big fear of was, will they think I’m a risk to them by sitting in a room with them? I know I’m not a risk to them, but do they know that? I didn’t know at that point. I know now that they don’t actually get any training around what HIV is or how it’s transmitted, so they might have some preconceptions.”
It has now been three years since Eugene first sought support. He ultimately accessed HIV-tailored counselling services through the Terrence Higgins Trust, a charity in the UK that works with people who are living with the virus.
“In that scenario, I knew I didn’t have to tell them about HIV, I knew they already knew, so that was really helpful,” he said. “I didn’t have to explain why stigma was a factor because they already knew stigma was a factor.”
“Now my mental health is much, much better. My mental health is now better than it was pre-diagnosis.”
National AIDS Trust wants to see a clear plan from the government
The National AIDS Trust’s report recommends that basic training on HIV and HIV stigma is included on the national IAPT curriculum so people who are living with the virus can feel more comfortable accessing services.
This recommendation is echoed by Calum Douglas, policy and campaigns officer with the charity.
“The relationship between HIV and mental health has been known for a long period of time,” he told PinkNews. “Traditionally, people living with HIV have tended to access mental health support through specialist services offered in HIV clinics, by the voluntary sector, and by HIV charities.”
In 2019, a study found that people with HIV were increasingly having to rely on generic, mainstream mental health services. The report found that staff in those services were not well trained on issues around HIV, which meant that those living with the virus weren’t getting the best possible care.
“We know that societal attitudes and knowledge around HIV is relatively poor,” Douglas said. “What we found is that unfortunately, while we might expect healthcare professionals to have more understanding, that actually there is still relatively low knowledge. People who responded to our survey did not feel that there was a high level of expertise about HIV.”
According to Douglas, there are “a range of things” that need to be done to improve the outlook for people living with HIV.
“Later this year we’re expecting heath secretary Sajid Javid to publish the UK government’s HIV Action Plan, and that will serve as the roadmap to reaching England’s goal of ending new HIV transmission by 2030.
“Within that, the department of health and social care must ensure that improvements to mental health provision for people living with HIV are included in that action plan. Those improvements need to include training for existing mental health professionals about HIV, the provision of more mental health professionals within HIV clinics, and better connected services so people living with HIV receive better care.
“There’s also a need for more resources to become available so access to good quality mental health supports is not a postcode lottery for people living with HIV, which currently it is.
“The government needs to ensure that the action plan is backed by appropriate funding,” Douglas added.