Opening up hospice care
Dallas Pounds, CEO of Royal Trinity Hospice, on why end of life services need to do more for LGBT people.
Hospice staff at Pride In London 2016
In the early 1990s, I was a nurse working in a small rural hospice when a young man was admitted for end of life care.
The physical care he received was first class but we were unable to give all the support we wanted to because, although we all knew he was dying of AIDS, he and his family would only speak about him dying of cancer. His partner was referred to as his best friend and they were not left alone together.
This collusion was absolutely about fear – fear of discrimination and fear of being outed. My feelings of anger, guilt, and letting this young man down have stayed with me through my career, and even before I came out myself I was on a mission to be inclusive in my care and latterly in my leadership and management.
When I became Chief Executive at Royal Trinity Hospice over 20 years later I realised that not much had changed. There was still work to be done in the hospice sector to be truly inclusive and accessible to all, including LGBT people.
People from LGBT communities do not have a great relationship with health care providers in general, and studies in recent years suggest that this is no different when it comes to hospices. Misinformation and fear of discrimination all too often result in late diagnosis, late referral, and poor treatment outcomes, for example the completely false belief that lesbians do not need to attend cervical screenings.
Many of us also have poor health-related lifestyle choices – high alcohol consumption, recreational drug-taking and smoking – all of which can contribute to long-term chronic conditions which if left unchecked can result in early death. This does not paint a rosy picture when taken with a high degree of social isolation in an ageing LGBT population, and in some cases lack of family support.
Royal Trinity Hospice, in the heart of London, is at the forefront of an ongoing campaign to ensure LGBT people know that hospices are here for them and their families. We were the first hospice ever to march at London Pride and to become a Stonewall Diversity Champion in 2014. We established an LGBT Friends group to support us, and have worked hard to ensure our environment and services are accessible to all, and our staff are trained and aware. We also support our LGBT workforce, with inclusive policies and terms and conditions, including specific provision for trans staff around issues like transitioning at work.
This year, there are 10 London hospices marching together at Pride, and we have launched a London Hospices LGBT Network to continue to develop our commitment to the LGBT communities we serve across the capital, and to our LGBT staff and volunteers.
We do not advocate special stand-alone services for LGBT people but services which are inclusive and welcoming to all regardless of personal characteristics. Hospices truly have this value at their heart; our mission is to ensure everyone knows that and are not worried about approaching us or receiving support and care from us.
That’s why a new campaign launched by national hospice care charity Hospice UK called Open Up Hospice Care is so important.
The campaign aims to raise awareness among the public about the fact that hospice care is available to all people, regardless of their sexual orientation, ethnicity, disability or illness.
You just might know someone who could benefit from accessing healthcare and perhaps hospice care – encourage them to give it a try. You can self-refer to your local hospice, just give them a call; the benefits can be truly life changing.
Find out more at hospiceuk.org.
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