Why we need to improve mental services for people living with HIV
by Dr Alexander Margetts
Not everyone who’s living with HIV needs mental health support. Indeed, many people manage the condition well, with good support from family, friends and the healthcare system.
However, we know that compared with those not living with HIV, there is sadly double the rate of distress and difficulties like anxiety and depression, with 1 in 3 people living with HIV reporting being diagnosed with a mental health condition at some point.
For some this will pre-exist their diagnosis of HIV, for others HIV may be a catalyst or a trigger. Diagnoses and labels are not without their issues as they can detract from the causes and consequences. In the world of HIV, stigma is a massive contributor, connecting also to isolation and loneliness. HIV can affect anyone, but we know that groups who are statistically more likely to acquire HIV are also more likely to experience other structural and social challenges, such as poverty, misogyny, racism, homophobia, transphobia, violence and trauma depending on their individual demographics and lived experiences.
The public’s ignorance, lack of awareness and in some cases prejudice about HIV lags behind the medical advancements in physical health care. This means those diagnosed with HIV now can expect a normal life expectancy given access to appropriate medication, and also be no transmission risk to others once stable on this (aka ‘undetectable’).
While this is incredibly positive compared with the situation a few decades ago, the transition from acute to chronic health condition is not without its own challenges. Some are applicable to all long-term health condition, such as appointments, medications, and health uncertainty. Others are specific to HIV, such as survivor’s guilt and PTSD (post-traumatic stress disorder) reactions for some of those diagnosed in the devastating earlier years of the disease.
Improving the mental health of people living with HIV is important then, and a double win, as this can assist with physical healthcare too (e.g. adherence to treatment), creating ‘virtuous cycles’ of positive wellbeing. So where and how can people get such care?
HIV and mental health services
Peer support (aka experts by experience) is crucial for many people living with HIV, and may be found locally or nationally. In addition, some people may need or request input from specialist mental healthcare professionals. Some larger HIV clinics will directly employ or contract this ‘in-house’, with colleagues forming part of the HIV multidisciplinary team alongside HIV doctors, nurses, healthcare assistants, pharmacists, physiotherapists, occupational therapists, dieticians and others.
Others rely on ‘mainstream’ non-HIV specific services, including IAPT. These services provide short courses of evidence-based talking therapy (usually Cognitive Behavioural Therapy, CBT) to people with common mental health needs such as depression and anxiety. Staff are unlikely to have expertise in HIV, although some may have completed training in other long-term health conditions.
After anecdotal feedback of mixed experiences, the UK’s HIV rights charity National AIDS Trust was keen to learn about the challenges and examples of best practice.
Its new HIV and mental health report prioritised the crucial voice of service-users within this in its survey of 58 people living with HIV who’d engaged with IAPT, with 12 of these engaging in in-depth interviews. The exciting findings have allowed for evidence-based recommendations and policy as highlighted below.
What we’ve learnt
IAPT currently is working for some people living with HIV, with examples of good experiences and care. However, we clearly have further to go, as unfortunately a significant minority encountered problems.
For example, 2 of every 5 respondents reported their mental health did not change, and 1 in 10 felt it had got worse. This does not necessarily mean that IAPT is to ‘blame’ for this. However, it clearly indicates the need for both training to improve current services, and stepped care pathways to more specialist services to counter the lack of HIV literacy and poor integration with wider HIV care found.
Indeed, even among those who benefitted in IAPT there is still a need and room for further development, as over 3 in 4 noted their experience could have been improved, with less than half happy to use the same service again.
Some of the critiques relate to general and common criticisms of IAPT such as waiting times (1 in 10 reported waiting more than a year to be seen) and number of sessions (2 in 3 wished for more). Others specifically to the interface with HIV, which is especially pertinent given that 4 in 5 respondents related their mental health difficulties to living with HIV.
Sadly over 1 in 3 did not think their therapist understood the ways in which HIV affects mental health, and less than half described their therapist’s understanding of HIV as quite or very good. Such ignorance is bad enough, however shockingly a quarter reported that their HIV status negatively affected the way they were treated.
Finally, the majority of experiences will have pre-dated covid-19 and the impact on healthcare delivery, both physical and mental, and so we can expect this is the tip of the iceberg. The value of this report is not only that it alerts us to such experiences of IAPT clients living with HIV, but that it offers practical and implementable solutions, so that we may work more effectively and compassionately to meet the needs highlighted above.
What we need to do next?
There is a clear requisite for training of existing and new IAPT staff with regards to HIV and HIV stigma, as well as wider marginalisation and intersectionality. Some of this could be added to the IAPT-LTC pathway and syllabus, while a minimum standard must be added to the broader national programme. Crucially, it must not be left to clients to educate their therapists during what should be their therapy time.
We do not expect IAPT to take a sole or solo role in mental healthcare provision for people living with HIV. Equally they certainly should not replace or defund existing specialist psychological services and staff working with those living with HIV. The appropriate template would be to mirror the way that IAPT trains therapists to work with cancer which dovetails with specialist psycho-oncology services.
Specialist HIV mental health services and clinicians will need to continue to be commissioned within and for HIV clinics, as will peer support services at local and national levels continuing to form another bedrock of support. We want then to enhance and improve - and in some cases instigate - the care pathways between them.
Equipped with improved cultural competency, we then have a duty and responsibility with and to our clients to collaboratively help them navigate their different options so they do not ‘fall through cracks’. In doing so we must be especially mindful that some will not have ever discussed their HIV status with their GP, and may wish to keep things this way.
All such work should also be evidence-based and evidence-generating, in line with IAPT’s general ethos, so we can monitor the impact of changes and audit the hopefully improving experiences of people living with HIV. And it needs to start today.
What can you do next?
So what can you do to improve the lives people living with HIV where you work?
- Read and share National AIDS Trust’s full HIV and mental health report to find out more details and galvanise others
- Think about what it may be like for a client living with HIV to access help in your service (and remember, you won’t always know they are living with HIV)
- Update yourself on HIV to spot and challenge any HIV stigma you encounter (in yourself and/or others)
- For more information about HIV, check out National AIDS Trust’s Understanding HIV page or contact info@nat.org.uk with any questions.
Dr Alexander Margetts is a Clinical Psychologist at Central and North West London NHS Foundation Trust. He was a member of National AIDS Trust’s HIV and mental health report’s advisory group.
As a Clinical Psychologist he has worked in HIV for over a decade, and is also a director for an IAPT-LTC (Improving Access to Psychological Therapies for people with Long-Term Conditions) training course,
This blog originally appeared in Mental Health Today.