Empowering people living with HIV to get the care and treatment they need

Often, we are asked how many people in the UK are living with HIV. The most recent figures for 2023 suggest that there are around 113,500 people living with HIV in the UK, with 100,063 people currently getting treatment and care. This leaves over 12,000 people who have been diagnosed with HIV but for various reasons are not currently getting care and treatment. In the health service this is known as being ‘lost to care’.

HIV Prevention England talked with Clara Marukutira, the Re-engagement in Care Coordinator and Ruth Burns, the Head of HIV Services at Terrence Higgins Trust to find out more about these people’s experiences; why are people not engaging with their care, and how can people get the help they need to re-start their care?

Clara told us: 'As the Care Coordinator, I have come across many service users who want to access services but have other issues which need to be dealt with first before fully engaging with health care services.'

Clara gave us an example of someone she has been working with to give an idea of how someone’s experiences can affect their ability to access the services they need.

'PP was trafficked into the UK. She had been told use a false name to board the plane, to destroy her passport on arrival and flush it down the toilet, and also to say she was from a different country to where the plane had flown from, as this would confuse the Immigration Service. She didn’t realise that this would be the beginning of many problems for her.

'PP was allowed to come into the country but had no benefits and even when the Home Office granted her status it was in the name she had used to board the plane. PP had been going back and forth with the Immigration Service and she still could not access benefits.'

'Even after being granted her status, she still struggled with the incorrect name issue and the system would not allow her to get subsistence money. PP then became homeless and because she had no recourse to public funds she continued to struggle. PP was slowly disengaging with services because she had no money and her situation was not getting better.'

'When I started seeing her we first dealt with her housing issue and she was put in temporary accommodation outside of her old borough. We also helped PP access peer mentoring services from 4M Mentor Mothers network and put her in contact with The Food Chain and the YMCA.'

'Eventually she got to work with someone who had experience working with the Immigration Service and they wrote on her behalf to the Home Office to officially correct her name. PP has gradually come back to care and is now taking her medication.'

Clara pointed out that when service users disengage from services it can be due to other pressing issues, such as the ongoing fear of being sent back to their country of origin.

Trying to resolve one problem can then bring up other problems which have not been dealt with, all of them getting in the way of someone being able to access the correct services and continue taking their medication.

Ruth told us that often the main barriers to care are:

• Life stability – perhaps someone is dealing with insecure housing/accommodation or immigration status which is more of a priority for them than their health.

• Financial issues – if money is tight, they may be unable to afford the extra costs of travel to their clinic, which can be some distance away from where they live.

• Lack of knowledge of the health care service - many people who are visiting the UK or have just arrived may think that they have to pay to access HIV tests and treatments, which is not true as they are free for everyone.

• Personal barriers – someone may be working multiple jobs to earn enough money and can’t take time off or rearrange shifts to attend clinic. Also, people often prioritise their children’s welfare over their own care and this gets in the way of them attending services.

• Self-stigma and/or denial – living with HIV still has a lot of stigma attached to it, and this can make it difficult for people to accept their diagnosis and seek and continue treatment. Diagnosis is often a shock and without understanding and support it can just be too much for someone to deal with.

• Chaotic lives – the regularity of appointments and medication adherence can be a challenge for some people. This can be due to the situation/s they are dealing with like domestic violence or because of alcohol or drug use, either theirs or their partners.

We asked Ruth how people who are in these situations could seek help.

‘The first thing you can do is call THT Direct on 0808 802 1221, open from 10am to 6pm Monday to Friday and an adviser can talk with you about your situation. From that conversation they can link you to any help and support you need, including support from someone in the Living Well Team at Terrence Higgins Trust.

If you are having money issues, they may be able to link you to the Hardship Fund which will assess your situation and make a small cash grant to help with any immediate financial needs.

The Living Well Team at Terrence Higgins Trust can link you with other organisations like 4M Mentor Mothers who can help support new mothers and The Food Chain who can help provide food and formula milk.

You can get online support and help and ask any questions you may have at My Community which is a private and confidential online space. You can join using a made-up name if you are worried about people finding out you are living with HIV, chat with people who have been in similar situations to you and read posts about the help and support you can get to make sure you are able to look after yourself. You can post a question 24 hours a day 7 days a week and you are likely to get a reply within a day.

There are other organisations across the UK like the George House Trust in Manchester, Waverley Care in Scotland and Brigstowe in Bristol and the south west that you can contact for help and support and that Terrence Higgins Trust works closely with in providing services for people living with HIV across the UK.

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