these groups had much in common, they also had significant differences in their
attitudes, needs and characteristics. Gay and bisexual men are by far the
largest community of over-50s with HIV, but black African women can face
complex challenges that often differ from other populations. White heterosexual
people, often neglected in HIV studies, are particularly well-represented in
this age group.
“I am worried that
too many clinics, hospitals and practitioners are treating me for separate
illnesses. There is one hospital for my HIV, another for HPV and two GPs for
cardiovascular problems.” White, gay man, 60
Physical health and
health care: The vast majority of respondents were on HIV treatment,
with over half reporting side-effects. Just under two-thirds were also on
treatment for other long-term conditions.
found almost twice as many other long-term conditions than we would expect in
the general public at this age. These conditions, like high blood pressure,
kidney and liver problems and arthritis, are mostly conditions of ageing but
can also be exacerbated by HIV itself and, in some cases, HIV treatment.
the fact that most people were registered with a GP, and most had disclosed
their HIV to them, there were extensive experiences of poor treatment in
primary and generalist healthcare settings. Older people use their GPs and
primary care far more often than younger people; they need as strong and
positive a relationship with them as with their HIV clinicians.
“The local GP I don’t think I’ve seen at all. I went
to one at the very beginning and found her so unhelpful and freaked out about
the fact that I was HIV … I never went back there again.” White, heterosexual
indicates an urgent need to improve the quality of primary care for people with
HIV and for better interaction between HIV specialists and other clinicians.
Black African women and other migrants in particular reported difficulties in
accessing health care and needed more support to negotiate the system.
single most common future need expressed was for good quality treatment and
health information, indicating high levels of clinical uncertainty and threats
to health. Many co-morbidities reported could be improved or reduced by
lifestyle interventions like good nutrition, exercise and smoking cessation.
People want to know more about these issues and how to take better care of
reported varying levels of sexual activity. Almost two-thirds were sexually
active in the previous year. A quarter had one partner, but one in six (all of
them gay/bisexual men) reported more than ten partners in the previous year.
HIV testing and sexual health promotion services need to take this into account
when planning initiatives and explicitly consider the needs of sexually active
older adults. A number of people commented that they felt left out by a lot of
current sexual health promotion.
Mental health: This group
also reported substantial levels of depression and mental health concerns and a
higher level of concern for future mental health. There is a need to identify
or develop counselling, emotional support and other strategies to improve
emotional wellbeing in older people with HIV.
overwhelmed by my circumstances and the state of mind I was in that I made
myself vulnerable to getting HIV…I’ve had to question why I allowed that to
happen. It’s to do with guilt.” White, heterosexual woman, 51
Social care: Three-quarters
of the respondents were concerned about access to social care (such as home
helps) in the future. Given that half of them already reported mobility
problems and almost half had difficulties with everyday activities, this is
unsurprising. Many people expressed fears about needing to use home or
residential care because of perceived prejudice and ignorance about HIV within
these services – a fear borne out by some of the experiences already related to
interviewers in the qualitative part of this survey.
advocacy workers have already come across cases of poor treatment by providers
of social care services to older people. Better staff training and clear
management standards for clients with HIV are needed – funders should ensure
these are included amongst quality measures. Given the imminent removal of the
ring fence on the AIDS Support Grant in England,
and cutbacks in all the countries of the UK, it is unlikely that there will
be many specialist HIV care services in the future. We are going to need to
make general services acceptable and accessible to people with HIV.
that in case I need to be cared for, the carer would be as ill-informed and
prejudiced about HIV as the rest of the general public.” Bisexual
Money and work: People
with HIV aged 50 or over were, in comparison with their peers, less likely to
be economically active and far less likely to have a financial cushion for
their old age. Almost half sometimes or never had enough money to manage on,
and they expressed serious fears about how they would manage financially in the
future. Black African women were the worst off financially.
around a third of respondents were working, almost as many were reliant on
state benefits. Half of those surveyed were not confident that they understood
their entitlement to benefits and many were worried about possibly losing
benefits in the future. Returning to the workplace, while it may be good for
financial security, for mental health and for long-term wellbeing, is not an
easy thing for many people who have long relied on disability benefits, and is
simply not possible for some.
with HIV aged 50 or over need support to stay in or re-enter the workplace –
where possible; where not, they need good, clear advice on benefit
entitlements. They also need access to debt counselling and financial planning
as an integral part of long-term condition management.
would like to go back to work but I can’t afford...because of the rent
and…there’s many out there like me. If we had the opportunity...there are many
people out there that are willing to move on with their lives.” Black
African man, 55
ownership was lower in this group than amongst their peers, and they were more
likely to be in council or housing association stock or in private rented
accommodation. Widespread concern about needing to go into a care home or
sheltered housing in the future – perceived to be unlikely to be supportive to
people with HIV – again featured. Additionally, gay and bisexual men feared
homophobia within these settings. HIV organisations need to work with providers
of social housing and care homes for older people to help them audit their
policy and practice around HIV and gay issues.
Social wellbeing and
seeking support: Many people reported social isolation and a need for
greater social contact, including a need for general social support, which is
currently more likely to be met in services for older people than those for
HIV. However, there was a clear overall preference for using HIV organisations
to get services.
am somewhat fearful of a lonely old age. In practical terms, if I become
mentally or physically frail, the prospect of being the only gay man in
people’s home is very frightening indeed.” Gay man, 52
many people reported good service from particular agencies in both sectors, no UK service was
widely identified as being suitable for older people with HIV. Rightly or
wrongly, the perception from many was that mainstream organisations for older
people may not understand HIV and both HIV services and those for older people
need to work together to change this.
older people were using volunteering as a route to social contact with other
people with HIV – volunteering opportunities for older people with HIV need to
be maximised. Not only would this increase social involvement, it could also
contribute to making services more representative of and appropriate to older
adults with HIV.
“Working as a health care worker...I have seen and
heard the nurses stigmatise patients. I’ve heard them say make sure you always
wear gloves and use plastic spoons, plates...I think one day I am going to be
ill and I am going to be treated the same way.” Black African woman, 51
discrimination: The greatest surprise within the findings was the
overwhelmingly positive or neutral outcomes reported by people disclosing their
HIV status. This differs considerably from some narratives within the HIV
sector, which can posit disclosure as a negative and dangerous action. In
talking with colleagues about this finding, we have faced responses from “of
course that’s true” to “but that can’t be right”. It seems that the whole issue
of disclosure and its genuine impact is ripe for exploration and discussion.
finding did vary between groups and settings, however, and those negative
outcomes could have important consequences. No African woman, for example,
reported an improved relationship from telling their partner, though many
reported good outcomes from other family and friends. There is a need for
services to constructively support older people with HIV in making informed
decisions about disclosure. Further research into the impact of disclosure
should also be undertaken with a balanced all-ages sample of people with HIV.
“My Mum just carried on drinking her tea. I never had
any fear of telling anyone I got it.” Gay man, 50
in five people did report experiencing discrimination in a variety of ways in
the past year, either because of age or HIV status. Overall, people were as
likely to report age discrimination as HIV discrimination, but in two areas –
health care and provision of goods and services – HIV discrimination was by far
the higher. Given the theme running throughout the research of problematic
relationships with primary and non-specialist health care, it is clear that the
NHS and other statutory bodies need to show greater leadership in challenging
HIV stigma. A good example of this is the recent Welsh Assembly inquiry into
HIV discrimination by healthcare professionals.
number of other examples of good practice were identified, including four
projects from the US, which
could easily be adapted to the situation in the UK. They included an employment
project, a project providing targeted advocacy for LGBT older people, a
speakers’ bureau for older people willing to talk about HIV and sexual health
to their peers and a care home for LGBT people, which specifically welcomes
people with HIV.
has benefited from HIV and ageing experts, working within both medicine and
policy, collaborating to improve services for older people with HIV and
challenge age and HIV discrimination in their respective areas.
“Hiding my rape from
people, I thought that was harsh, but HIV is worse. HIV is like you are a
or you sleep with gays. People back home…won’t come to your house, your
children will be mocked.” Black African woman, 51
in terms of the specific populations examined within the report, it was clear
that, while much about HIV and ageing bound them together, each group showed
strong and specific characteristics. Gay men had immense fears for the future
around how care services would cope with any gay man, let alone gay men with
HIV, yet they also felt marginalised within a youth-obsessed gay culture.
African women had by far the hardest time overall, coping with poverty, poor
housing, treatment access and migration issues, as well as major HIV stigma
within their cultures.
know this is a new life for me, I am living again. This is my chance of
I don’t think if I was at home I would get my 50th birthday – that’s for
– Black African woman, 51
heterosexual people reported considerable isolation, financial concerns and a
sense that existing services did not prioritise their needs.
research is far from the last word on HIV, ageing and social issues in the UK, but should
be seen as the start of a dialogue between older people with HIV, organisations
that provide services and policymakers and funders. Older people with HIV face
an uncertain future in many ways; the knowledge generated by this report
enables us to change for the better how our society supports them in that