The suicide rate for people living with HIV is twice the rate of the general population [1]; with around one in three people living with HIV experiencing symptoms of depression at some point in their lives [2]. The key underlying factor that makes HIV stand out from other long-term conditions is stigma.   

Key points:  

  • There is a clear disparity between treatment for the general public with mental ill-health and those with HIV suffering from mental ill-health 
  • We must breakdown the stigma surrounding HIV to improve the mental health of those with HIV 
  • Whole Person Care for those with HIV outlines a more holistic approach to care, focusing on both mental and physical health 

Problem 

HIV stigma is still very prevalent today. The Positive Voices Survey, Talking about HIV and attitudes, reflected on the impact this Stigma has on people living with HIV, exposing that: ‘1 in 6 (16%) women said they had not shared their HIV status with anyone outside of a healthcare setting, compared to 1 in 9 (11%) men’ [3].  

More worryingly, this stigma was reported to be felt within a healthcare setting. The survey showed that ‘Women do not necessarily feel safer in a healthcare setting; 41% reported feeling worried about being treated differently to other patients in the healthcare setting and 21% of women have avoided seeking healthcare when they needed it’ [3]. 

HIV stigma has been shown to have a detrimental impact on the mental health of those with HIV. Deborah Jack, Chief Executive of NAT (National AIDS Trust), outlines how: “The mental health needs of people with HIV are often overlooked in favour of just focusing on physical health.” [4]. With the effects of stigma, discrimination, side effects of treatment and fluctuating symptoms “psychological support can be as important for the health of someone with HIV as taking treatment.”[4]. 

HIV stigma is preventing the progress towards stopping HIV transmissions, as those suffering report feelings of low self-worth and, consequently, many people do not seek help or treatment. The multi-party 2020 report ‘The Missing Link: HIV and mental health’ has shown that failure to address the mental health needs of people with HIV could negatively impact on progress towards ending the epidemic and is leading to increased infections [3]. The report quotes Dr Spencer: “If we’re serious about tackling HIV and achieving the 2030 target of zero transmissions – and we should be – then we need to get serious about dealing with mental health issues in people with HIV” [5]. 

Solution 

Firstly, public health bodies must campaign to reduce the stigma surrounding HIV and normalise the subject. There are still common misconceptions about how it is transmitted and what it means to live with HIV.  

Secondly, we must move towards a more holistic healthcare service for those living with HIV. The ‘Whole Person Care in HIV care and support’ recommendations show promise in creating a more holistic support and care approach. The report focuses on ‘support and treatment that does not simply treat HIV from a medical perspective, but recognises the many other social, economic, employment, and physical and mental health needs that are associated with the condition.’ [6]. 

Challenges 

There are already challenges presenting themselves when implementing these recommendations. The Missing Link: HIV and Mental Health Report continues that the “implementation of these guidelines is patchy and there is no standard system for monitoring uptake of the guidelines…leading to gaps in mental health provision for people with HIV.” This is significant as it highlights the lack of progress made in developing ‘whole person care’ [5]. 

There is a marked disparity between effective treatment for the general public with mental ill health and those with HIV suffering from mental ill-health. We spoke to Natasha Dhumma, from the NAT, who argues that tailored mental health support is something that’s needed: ”The social care act of 2012 has generated fragmentation within the health care system. This fragmentation has meant that there’s no clear kind of person/organisation taking responsibility for all of the health needs of HIV patients, leading to gaps within care with consequent delays worsening the health of people living with HIV.” 

Next steps 

The Kings Fund research, The future of HIV services in Wales, furthers this line of argument, reporting: 

‘The message we have taken is that people want the national bodies (both statutory and representative) to help make the existing arrangements work better, not to rearrange responsibilities or reinvent top-down leadership.’ [5]. 

They conclude that stronger and better-aligned networks of care, for people living with HIV, must be formed at a local level [6]. The report argues that this can be achieved through: 

  • Vertical integration encourages specialist care, primary care, social care, third sector support and services to work together coherently. 
  • Horizontal integration requires services to join up. For example, across London there are numerous HIV clinics. Horizantal integration encourages them to work together and share sevice. This makes it easier to co-ordinate and be more consistant in implementing good practice.  
  • Hub and spoke requires a combination of vertical and horizontal models. This model works well for specialist services such as pharmacists and doctors, work with a group of general practitioners or social services to provide holistic care for people with HIV. This will help with appropriate information sharing. [6]. 

Local areas will need to integrate their approaches to suit the benefits of the services they already offer using one of the above models. 

Finally, there is a clear consensus that the Department of Health and other national bodies must take ‘action to reduce and eradicate the stigma associated with HIV and increase public understanding’ [6]. 

The Terrence Higgins Trust, NAT, British Association for Sexual Health & HIV, Positively UK and NAZ collectively published a call to action: 

‘We call on policymakers, healthcare professionals, commissioners, funders and local authorities to incorporate the principles of Whole Person Care into HIV treatment and care pathways. These principles should inform and guide changes to funding, commissioning and service delivery, which we hope will ensure that patients benefit from a more holistic and effective support framework.’ [7]. 

Sources:

[1] aidsmap. 2017. Suicide accounts for 2% of deaths in people with HIV, twice the rate of the general population. [accessed 6 January 2021] 

[2] Terrence Higgins Trust. [Accessed 6 January 2021]  

[3] Positive Voices. 2018. Talking about HIV and attitudes. [Accessed 6 January 2021] 

[4] National Aids Trust. 2011. NAT comments on the mental health needs of people with HIV on Mental Health Action Week. [Accessed 6 January 2021] 

[5] The All-Party Parliamentary Group on HIV and AIDS. The Missing Link: HIV and mental health. [Accessed 6 January 2021] 

[6] The Kings Fund. 2017. The future of HIV services in England. [Accessed 6 January 2021] 

[7] MSD. 2017. No-one left behind, A declaration on ’Whole Person Care’ in HIV care and support. [Accessed 6 January 2021] 

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The suicide rate for people living with HIV is twice the rate of the general population, with around one in three people living with HIV experiencing symptoms of depression at some point in their lives. The key underlying factor that makes HIV stand out from other long-term conditions is stigma. 

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