People with HIV are now living longer than ever, because of effective HIV treatment. And many people living with HIV have other health conditions too (also called co-morbidities). That means there are more people with HIV now living in residential care settings, such as care homes and nursing homes.
This page gives general information about how you can advocate for better treatment in residential care settings. The advice may be helpful if you’re living in sheltered housing as well. It might also be helpful if you are advocating for a friend, partner or family member who is living in a residential care home or sheltered housing.
Challenges living in a residential care home or sheltered housing
Living in a residential care home or sheltered housing can be challenging, especially if you’re living with a long-term condition, like HIV. Some people might find that they don’t receive the treatment they need and deserve.
- Unfortunately, there’s still a lot of stigma about HIV. Some people may experience worse care when their care provider knows they’re HIV positive.
- Living in a residential care home means you share the home with other residents. Some people may face abuse or discrimination from other residents if they find out about their HIV status or sexuality.
- One of the groups most affected by HIV are people from minoritised ethnic backgrounds. This means they may face discrimination because of their ethnicity and because of their HIV status.
- Some carers may not know much about HIV and important facts like U=U.
- Some people may not be able to advocate for themselves, for example, because of their mental health or cognitive conditions, like dementia.
- It might not always be clear who is ‘in charge’ of your care. It can feel like you have to rely on others to organise your care, for example to make sure you can attend your clinic appointments or take your medication on time.
- Some people experience breaches of confidentiality, where their care team tells others about their HIV status without their consent.
- Living in residential care or in sheltered housing can feel isolating. It might feel like there’s not enough support for mental wellbeing.
- Sexual and romantic relationships are for everyone. But it can feel difficult to maintain these relationships or build new ones when you live in a residential care home. Some people might also feel worried to share their sexual orientation with their care team or other residents.
There may also be something about your care which needs to improve that is unrelated to HIV. This is just as important.
The care you deserve
Whether you’re living with HIV or not, you are entitled to good care. HIV is classed as a disability from the moment it gets diagnosed. That means you’re legally protected under the Equality Act 2010 and it’s against the law if carers refuse to provide care to you because of your HIV status. It’s also against the law to treat you differently because of your HIV, for example taking unnecessary precautions like double gloving or treating you in a hostile or degrading way.
The Equality Act 2010 also protects you from victimisation. That means it’s against the law for someone to treat you worse after asserting your rights under the Equality Act. For example, a carer shouldn’t treat you poorly after you complained that they shared your HIV status without your consent.
You’re also legally entitled to make requests for reasonable adjustments. These are adjustments to prevent your HIV from putting you at a disadvantage compared to others who are not living with HIV. For example, you should be able to request having your medication at meal times if you’re taking a type of HIV medication that needs to be taken with food.
Other protected characteristics under the Equality Act 2010 include race, sexual orientation and gender reassignment. That means it’s against the law if someone discriminates against you because of your race, sexuality or if you’re transgender.
You are entitled to the care you need and deserve. For example, carers should:
- Always treat you with dignity and respect.
- Ask about and respect your wishes concerning confidentiality. For example, not tell other staff or residents about your HIV status without your permission.
- Support you taking your medication, if you need help.
- Help you attend clinic appointments.
- Support you with personal hygiene, if you need help.
- Help you with referrals to other support services, if you need them.
- Help keep your environment clean and safe.
Speaking up
Unfortunately there might be times where the care and treatment you receive is not good enough or you’re being discriminated against. In these cases, it’s important to advocate for the care you are entitled to.
Speaking up and advocating for yourself can be challenging. It can be especially hard if you are not feeling very self-confident or when you’re feeling unwell or vulnerable. You might want to ask someone else, like your partner, a family member, a close friend or a support worker, to support you.
The staff may not know as much about HIV as you would like or expect. It can be helpful to share resources with them to improve their knowledge. The National AIDS Trust developed the guidelines HIV: A guide for care providers specifically for carers – you might find it helpful to share these with your care team.
If you experience discrimination from your care team, you can reach out to the National AIDS Trust's Discrimination Advice and Support for support by calling 020 7814 6740 or emailing casework.support@nat.org.uk. Their services are confidential and free of charge. You can also reach out to the Citizens Advice Equality Advisory Support Service Helpline for advice.
Making a complaint
If you’re unhappy with the care you receive, you’re well within your rights to make a complaint about this. Typically, the first step is to have an informal conversation with the carer, for example, by telling them about the incident you’re unhappy with. However, you should only do this if you feel safe to do so.
If speaking to the carer doesn’t help or you feel unsafe to do so, the next step would be to make a formal complaint to the manager or director of your residential care home or sheltered housing. You can also make a complaint to the manager or director if you’re experiencing discrimination or abuse from another resident.
If this doesn’t work and you want to make a more formal complaint, you can contact your local council or Local Government and Social Care Ombudsman. You can also make a complaint to the Care Quality Commission if you’re unhappy with how the care home is run.
If someone shares your HIV status with others without your consent, you can also make a complaint to the Information Commissioner’s Office, who can help determine if your status was shared unlawfully.
You can find helpful advice on making complaints in the Age UK factsheet. For example, it can be helpful to make the complaint in writing and provide any evidence you have in your letter or email. It’s also good to be as precise as possible about what you would like the outcome of your complaint to be – for example, an apology or a plan on how to avoid the issue from happening again.
If you’re advocating for someone else, please remember to always seek their consent if you’re sharing personal information, like their HIV status.
You can also ask for advice by reaching out to the National AIDS Trust's Discrimination Advice and Support or the Citizens Advice Equality Advisory Support Service Helpline.
If you or the person you’re supporting are in immediate danger or experience acute abuse, call 999.
10 tips on how to advocate for better treatment in residential care settings and sheltered housing
1. Don’t be afraid to speak up
Remember that you have a say in your care. You’re entitled to care that fits your needs and you don’t have to accept anything less. Don’t be afraid to speak up if you feel like you’re not receiving the treatment you deserve.
2. Keep everything in writing
When advocating for better treatment, keeping things in writing can help to gather evidence in case you need it later on. This way you can refer back to your requests later on.
3. Seek advice early on
It’s always good to seek advice and support early on, especially if you think you may need legal advice. That’s because some legal claims can only be made within 6 months of the discrimination happening. So it’s good to act as soon as possible if you think legal action might be a possibility.
4. Be clear about your expectations concerning confidentiality
Your HIV status should always be treated with confidentiality. Unfortunately, this is not always respected by everyone. That’s why it can be helpful to be very clear about your expectations from the beginning. For example, by telling the carers who already know about your HIV status and if you wish for it to be kept confidential from other staff, residents, family and friends.
5. Ask for support
Everybody needs help sometimes. Remember that you don’t have to do everything by yourself! It’s okay to ask for help if you need it. You might want to ask a family member, friend or partner for help. They can help you with administrative tasks or can be present during appointments to support you. You can also reach out to local advocacy groups for support. You can find them by searching local services at VoiceAbility or by googling “advocacy + your town”. You can also contact your local council to ask about advocacy services in your area.
6. Ask for an assessment of your needs
Being clear about your needs of care is really important to ensure that you receive the right care. This is usually done with a care needs assessment, before you move into residential care. You can request a re-assessment if you think your needs have changed or were not accurately recorded in the last assessment.
7. Do your research
When moving to a residential care home or sheltered housing, it’s good to do some research. You can visit the facilities to get a feeling for what it’s like and speak to residents and staff ahead of time. You can also visit the Care Quality Commission website to see the their rating of each care home.
8. Move if things don’t get better
Your wellbeing and safety is the top priority. If your treatment doesn’t get better, you might want to consider moving to a different residential care home. You can find residential care homes near you on the Care Quality Commission website. You can also use private companies to help you find a care setting that suits your needs.
9. Remember you’re not alone
Many people living in residential care homes feel lonely or isolated. One way of combatting loneliness in later life are befriending services – this is when you regularly meet and chat with a volunteer, either over the phone or in person. There are many charities that offer this service, including Age UK.
10. Connect to other people living with HIV
You might also find it helpful to connect with other people living with HIV. You might have access to different groups and services depending on where you live:
- Positively UK offers peer support. That’s when you receive support from other people with similar lived experience. Positively UK also organises community events, both in-person and online.
- Terrence Higgins Trust also organises peer support groups and learning events for people living with HIV, both online and in-person. They also have an online community forum. It’s a free and welcoming place to meet other people living with HIV.
- Plushealth is another organisation that offers peer support, either online or via the phone.
- Ageing Well is a project by George House Trust for people over the age of 50 who are living with HIV in Manchester and Liverpool. All of their events are in-person.