A common theme running through these stories is that the needs of people living with HIV are complex, change over time and go beyond the day-to-day management of HIV. When these needs are unmet it is often due to obstacles to accessing services, difficulty navigating health and benefit systems, or lack of awareness that a service even exists.
The Positive Voices survey revealed significant levels of unmet need among people living with HIV in England and Wales, particularly for social care, support services and certain health services.
However, survey responses also painted a positive picture. In the past year, 4 in 5 people needed an HIV-related service, such as HIV treatment advice, adherence support, or peer support. In 80% of cases, respondents said that these needs had been met. This suggests that the majority of people with HIV can find the information and support they need from HIV clinics, HIV charities and voluntary organisations, or other places such as the internet.
The survey found extremely high levels of satisfaction with HIV clinical services, with participants rating their HIV clinic on average 9.3 out of 10. Over 95% of people reported feeling involved in decisions about their HIV care and enabled to self-manage their HIV.
In contrast, a similar proportion of respondents (77%) reported other health needs not related to HIV, and only half of people with other health needs had these met. Discouragingly, nearly half (46%) of people had a social and welfare need, and two-thirds (62%) of these needs were unmet.
Each need represents a personal concern or crisis that can have many possible causes. Some needs may be resolved by a simple intervention, while some may require ongoing support and may never be fully resolved. However, the impact of an unmet need can have serious consequences on our emotional and physical well-being, and ability to cope with daily life. In this section, we explore some of the key themes around ‘need’ that emerged from the stories and data.
The Positive Voices survey asked people whether they used specific services (29 in total) in the past year, and whether they received that service. The services were split into three categories: HIV-related services (6), health-related services (11), and social and welfare service (12). People who had a specific need for which they could not get help or felt not able to ask for help were said to have an unmet need.
Managing multiple health conditions is very common among people living with HIV, reported by 73% of respondents. Conditions such as high cholesterol, hypertension and diabetes were all prevalent (affecting 29%, 23% and 7% of people with HIV respectively) and are known precursors of cardiovascular disease, for which people with HIV have double the risk. Two other common conditions reported, included arthritis (12%), peripheral neuropathy (8%) and kidney disease (5%).
The survey also found that long-term conditions cluster (having one condition makes it more likely to get another) and increase with older age. With effective treatment, the HIV population is ageing and by 2023 over half of people with HIV will be over 50. Therefore, it is increasingly important that people with HIV have the information and advice needed to manage HIV and other health conditions and understand the possible effects of living with multiple health conditions.
The HIV clinic is the gateway for many to access services. This often depends on us being proactive and persistent in seeking support or advice, and yet not all of us are able to self-advocate for the referrals we need.
HIV care and treatment and the management of non-HIV related conditions were historically provided by specialist HIV services until changes in the provision of care meant responsibility was split across the health system. This has resulted in a complicated care pathway that does not work well for people living with HIV.
Outside of the HIV clinic, healthcare providers can lack the knowledge or confidence to treat and prescribe for conditions where HIV is also present. This leaves many people with HIV feeling responsible for educating their GPs about basic HIV facts, having to research drug interactions and treatment side- effects, or possibly avoiding seeking healthcare.
Robust communication and referral pathways are vital to ensuring that our clinical needs beyond HIV are met. Good communication between HIV clinicians and other NHS providers can be reassuring. If clinicians in other specialitites know where to get up-to-date advice on HIV and drug-drug interactions this will support better care.
People living with HIV are around twice as likely to have mental health problems compared to the general public, depending on how it is measured.
The most common mental health conditions reported were depression (diagnosed in a third) and anxiety (diagnosed in a quarter). There was also significant experience of rarer conditions such as sleep disorders (15%), post-traumatic stress disorder (5%), psychosis/schizophrenia (2.4%) and bipolar-disorder (1.7%). Significantly, the presence of mental health difficulties was the same across all ages, genders and ethnicities.
Many of the needs identified in the Positive Voices survey are interrelated with mental health, for example loneliness and isolation, poverty, alcohol and drug use, and managing multiple health conditions. But, many struggle to access the mental health services they need. This is exacerbated by the fact that some HIV specialist support services that would alleviate stress, promote well-being and prevent crises, are becoming harder to access.
The link between HIV and poor mental health varies from person to person, but having HIV is clearly connected to how mental health is experienced. Most people in the survey (70%) had a mental health diagnosis around the same time or in the years following their HIV diagnosis. However, 30% had a pre-existing mental health condition diagnosed prior to HIV.
HIV can be a catalyst for negative feelings. In the HIV Stigma Survey UK in 2015, 1 in 5 people reported having felt suicidal and more than half had felt shame, guilt or self-blame in relation to their HIV status in the past year.
The HIV clinic was identified as important for signposting to mental healthservices. It is a place where people feel protected from stigma and plays a role in supporting people to access the broader mental health support they need.
Among people with HIV, binge drinking and use of illegal or non-prescribed drugs was commonly reported, particularly among gay and bisexual men – 41% reported binge drinking and 39% using drugs in the previous 3 months. In contrast, recreational drug use was reported by only 5% of women, but binge drinking was reported by 32%.
Overall, one in 12 (8.5%) people with HIV reported a need for support arounddrug use – such as drug counselling, drug detox or maintenance and chemsex (sexualized drug use) support. Need for these services rose to 22% among people who reported recent drug use. 1 in 8 (12%) men and 1 in 25 (4%) women who binge drink said they needed alcohol counselling or treatment.
For many people, the needs reflected an ongoing and potentially urgent issue: 70% of people who were not able to access drug-related support services continued using drugs.
When drug and alcohol support services are available, they can be highly effective at stopping a cycle of drug and alcohol abuse. These services offer strategies to overcome stress and anxiety, to improve self-confidence and create supportive social networks, and can help us to develop safer and healthier lifestyles.
Drug and alcohol services are funded through local authorities as part of their public health remit and, while they have a duty to identify and meetlocal needs, there is no specific legal requirement to provide these services. The public health budget has faced significant cuts and clearly the servicesavailable are not adequately meeting the needs of people living with HIV.
Financial instability affects many people living with HIV – 46% of women
and 32% of men live at or below the poverty line (less than £20,000 annualhousehold income). The need to access welfare benefits is crucial for many people living with HIV to meet their costs of living – 56% of women and 30% of men with HIV are in receipt of some sort of means-tested benefit.
One in eight (13%) people with HIV are in receipt of housing benefit, 13% get Employment and Support Allowance (ESA) or Incapacity Benefit, and 15% get Disability Living Allowance (DLA) or Personal Independence Payments (PIP).
Yet, 68% of women and 44% of men said they do not always have enough money to meet their basic needs (eg utilities, food, rent), and 43% of women and 22% of men are behind with household bills. This is supported by the high unemployment rate for people with HIV – 2.5 times the UK average over the same time period in 2017 (11% vs. 4.5%).
Navigating the benefits system can create fear and anxiety. Many struggle to access the benefits they are entitled to, especially with the UK benefit system undergoing such big changes. A NAT review of the new PIP system raised significant concerns with how eligibility is assessed and how suitable the approach is for people living with HIV.
The report found that the assessment criteria fail to consider issues relevant to people living with HIV, such as treatment adherence and the impact of living with a fluctuating condition.
The NAT review also found that the assessment process itself was a source of great stress. In the Positive Voices survey, 20% of people needed help claiming benefits and 16% needed financial advice – but an alarming proportion of this need was not met. Nearly half (48%) of the need for help claiming benefits was unmet and two-thirds (64%) was unmet for financial advice.
Nicholas took his appeal to tribunal. He is not alone. In 2016/17 almost 300,000 cases went through reconsideration by the Department of Work and Pensions (DWP) and 107,645 cases were appealed at tribunal.
In 65% of tribunal cases, DWP’s original decision was overturned; this
only happened in 15% of DWP appeals of new claims (as opposed to reassessments).
Not everyone is in a psychological or financial position to take this matter to court and HIV-related stigma may also act as a barrier to challenging decisions. High quality advice and support is vital.
Supportive relationships, social networks and social interaction with other people who have HIV are all important for our well-being and quality of life. Talking about HIV and how it affects us can be pivotal to overcoming challenges.
But, feelings of isolation and loneliness were commonly reported by 1 in 5 (20%) people with HIV. Of all the services examined this had the greatest area of unmet need – 75% of people who needed help dealing with loneliness and isolation did not receive it. Feelings of loneliness and isolation were equally common across all ages, ethnicities, genders and areas of residence and similarly this need was mostly unmet for everyone.
HIV support services can be life-saving for people with HIV, providing a wide range of services such as peer support, psychological support, sex and relationships support, information, advice and advocacy. Of those who had ever used them, 81% said that HIV support services were moderately or very important to their health and wellbeing.
To view the Changing Perceptions report regarding HIV and our needs please click on the Download below.