Getting care and support if you're LGBTQ+
If you’re LGBTQ+ and you are living with a terminal illness, this page may be helpful for you. Your partner, family or friends may also find it useful.
Living with a terminal illness and getting the best care and support can be challenging for everyone. We all have individual needs and will have different experiences. Being LGBTQ+ may mean that you have specific concerns or questions about getting the care and support you need.
On this page:
Getting care and support
When you’re living with a terminal illness, you might have lots of different worries or needs. Getting the right care and support can help with these things and make a difference to your day-to-day life.
You might have physical problems, like feeling tired, feeling breathless or being in pain. You might have lots of emotions or worries, which can be difficult to cope with.
It can sometimes feel difficult to know how to get the care you need, especially if lots of different people are involved. There is support available for you and your loved ones. If you’re not sure how to get support, speak to your GP or a healthcare professional you trust.
Knowing that you can have specialist support without prejudice at your most vulnerable time is so important. Everyone deserves a good life and a good death with the people they love around them.
Palliative and end of life care
Palliative care is treatment, care and support for people with a terminal illness, and their loved ones. You can receive palliative care at any stage in your illness.
End of life care is treatment, care and support for people who are nearing the end of their life. It’s usually for people who are in the last 12 months of their life. It’s an important part of palliative care.
Different health and social care professionals might provide care and support. You may also need help from your partner, if you have one, and your family or friends. There may be other people who can support you, including support groups, faith groups and online communities. Some organisations have specific LGBTQ+ or LGBTQ+-inclusive groups you could join. Stonewall may be able to help you find a support group near you.
Should I tell professionals that I’m LGBTQ+?
It’s your choice what you tell people – there’s no right or wrong decision. What you choose to tell people depends on what you are comfortable with and what you feel is important.
Talking to professionals about your sexual orientation or gender identity can help to make sure care is centred around who you are and what’s important to you. Telling professionals about the people who are important to you means that they can involve them in decisions about your care and can support them too.
You might worry about telling health and social care professionals about your sexual orientation or gender identity. You might be hesitant if you’ve had negative experiences in the past. It might be especially difficult to know whether to say anything if you see different or new health and social care professionals. It can also be challenging if they’ve already made assumptions about your sexual orientation or haven’t used your correct pronouns or name.
If you tell professionals that you’re LGBTQ+, they should continue to treat you with dignity and respect at all times.
I was scared of the hospice to start with, but they made me feel very, very comfortable there. So, once I came to terms more with dying I then felt I could open up more about all sorts of things. Because life was so short, I could open up about my gender. And I actually offered information to the music therapist. I felt I could let go. I just felt this sense of being comfortable around him. And he asked nice questions.
What are my rights?
You should be treated with dignity and respect, and your care should be centred around your needs and preferences. Your loved ones should also be supported.
You might worry that health and social care professionals will treat you differently because of your sexual orientation or gender identity. You may worry that they won’t understand your needs or choices and you may have had negative experiences before.
It’s also common to worry about how other people where you’re staying or receiving care will treat you – for example other people in a hospital, hospice or care home.
Health and social care professionals should always treat you with dignity and respect. It’s against the law for people to treat you less favourably than others because of your sexual orientation or gender identity. If you’ve been treated unfairly, you can report it directly to the person themselves, their manager or the organisation. Organisations should have a complaints procedure, and you might find it useful to see it. You can get support about discrimination and your rights from the Equality Advisory & Support Service . We know that people don’t always feel comfortable or able to report things – it’s your choice what you do.
If you’re not comfortable with the care you get from your GP, you can ask to change GP within the GP surgery or register with a different GP in your area.
It may also help to talk about your experiences with your loved ones or organisations that provide support.
Emotional support
Emotional support is an important part of palliative and end of life care. After you’ve been diagnosed with a terminal illness, you may experience lots of different emotions including denial, anger, regret and loneliness. This can be especially difficult if you also have self-esteem problems, anxiety or depression.
You may start to think about your life in a different way, and some people find themselves searching for meaning, hope and belonging. These things are sometimes called spiritual needs and affect people whether they’re religious or not.
Social care or personal care
You may need help with everyday activities like getting up in the morning, cleaning your home and making meals. This is sometimes called social care or personal care.
You might need help with things like getting dressed, washing and going to the toilet. Many people find it uncomfortable to have someone else help them with these things. It can sometimes help to say if you’re nervous or worried. Health and social care professionals should always treat you with respect.
Some trans people say that they feel concerned about having this type of care because of other people seeing their genitals. You may also have specific needs for your personal care. You can tell your health or social care professional what support you need and they should consider how they can best help you.
If you need social care or personal care at home or in a care home, you may have to contribute towards the cost. This will depend on where you live and how much income or savings you have.
Benefits and finances
If you’re living with a terminal illness, you and someone looking after you might be able to claim benefits. There are benefits that can help with the costs of having a health condition, or the costs of caring for someone who does. Some aren’t means-tested, which means they aren’t affected by any other income or savings you have. If you have a terminal illness, you may be able to get benefits more quickly and they might be paid at the highest rate.
Support for your partner, family or friends
Your loved ones might help with practical things like taking you to appointments, food shopping, dressing and taking medication. They may also provide emotional support and companionship. We know that they might find these things challenging – physically, emotionally and financially.
If a partner, family member or friend is looking after you, they can get a carer’s assessment (in Scotland, an Adult Carer Support Plan). This will look at what help they need to support you.
Palliative care and end of life care also include supporting your loved ones. Their GP or one of your health or social care professionals should be able to tell them about local services and how they can get support.
The words we use
We know that the words we use are important. Everyone will have different preferences and we respect people’s right to choose their own words.
LGBTQ+ is a term we use to include people who are lesbian, gay, bi, trans and/or queer. The ‘plus’ is inclusive of people who may describe their sexual orientation or gender identity in a different way, including asexual or intersex.
When we talk about your partner, family and friends or your loved ones, we mean anyone who is important to you. This might be a partner, husband, wife, civil partner, birth family, family of choice, rainbow family and/or your friends.
In our hospice, we’ve been doing training with staff about LGBTQ+ inclusivity. The response has been really positive and we’re now doing more across the UK.
Equality Advisory & Support Service - advice about your rights
Hospice UK - find a hospice near you
LGBT Foundation - advice, support and information
Opening Doors London - support for LGBTQ+ people over 50
Stonewall - help and advice for LGBT people
Switchboard - LGBT+ helpline
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About this information
This information is not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
