Our latest guest blog is from Eleanor Briggs, Director of Policy and Campaigns at the National AIDS Trust. She explains how the care system could do more for older people living with HIV.
William had a bad experience when he was discharged from hospital to a care home. When he asked for a bath he was often ignored, or left to wait until everybody else had been washed. He was given separate disposable cutlery and when his neighbours came to visit, they were told not to let their child go into his room. Why? Because William is living with HIV.
This is not a story from the 1980s when we didn’t understand the virus and effective treatment was not available. This was last year. If staff had been aware that there is no risk of transmission from everyday care activities, he would have had a very different experience. His awful treatment was based on ignorance and fear.
In response to cases like this, NAT (National AIDS Trust) has developed a guide for care providers in partnership with Skills for Care and the Social Care Institute for Excellence. This is really needed given the ageing demographic of people living with HIV. Now 1 in 4 people living with HIV is aged 50 or over, compared to 1 in 8 a decade ago.
This changing demographic is a result of the rise in number of people being diagnosed in their 50s and beyond, plus improved treatment which means that those diagnosed many years ago are now living into old age. Of course it’s a cause of celebration that someone diagnosed in the UK today can expect to have a normal life expectancy – but it also means care providers need to be ready to meet the needs of older people living with HIV.
And what are those needs? To some extent we’re still waiting to find out. There are many unanswered questions about the long term impact of HIV medication and several ongoing studies looking at HIV and ageing. What is becoming clear is that older people living with HIV are more likely to experience conditions related to ageing at a younger age (heart disease, dementia, and arthritis).
But when you speak to older people living with HIV, they are often more concerned about the stigma and discrimination they may face relating to their HIV status. Throw into the mix the fact that the people in the UK most affected by HIV are gay men and Black African communities (individuals that already sometimes face homophobia and racism) and you can see why people are worried.
NAT’s guide sets out clearly how HIV can and cannot be transmitted, as well as providing information about medical care, the importance of confidentiality and the rights of people living with HIV. Researching this project we did find many examples of good quality care – we now want to make sure that this is the norm so that people like William can feel safe and confident when they need to access care.
For more information about Age UK’s human rights and discrimination work, you can visit our Our Rights Our Voices web pages. If you have any questions or concerns about the content of this blog, you can speak confidentially to one of Age UK’s expert advisers by calling the Age UK Advice Line free on 0800 169 65 65.