Keech Hospice Care has been working to give palliative and end of life care workers in Bedfordshire, Luton and Milton Keynes a better understanding of LGBTQIA+ communities and the additional concerns and needs LGBTQIA+ people may have when diagnosed with a life limiting illness.

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Project and outcomes

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Project overview

For most of 2022, the United Kingdom was in lockdown. This meant it was difficult for many people in LGBTQIA+ communities to celebrate Pride and mark the 40th anniversary of the beginning of the AIDS pandemic.

At Keech, sessions were held to raise awareness of the LGBTQIA+ community, and discuss the issues and concerns LGBTQIA+ people may have relating to palliative care. 

This led staff to consider how the hospice promoted inclusion for LGBTQ+ people. Some of the staff who had been working in palliative care for a long time remembered patients they had cared for in the past, where in hindsight they would have done things differently.

It was clear that more needed to be done to ensure the hospice could better support the LGBTQIA+ community. Staff needed to be able to recognise the individual needs for people in the LGBTQIA+ community who have been diagnosed with a palliative illness and also to challenge their own unconscious bias.

Mark Pedder (Lecture Practitioner in Palliative and End of Life Care) and Roger Kelly (Complementary Therapy Co-ordinator) developed training sessions for staff in the hospice and the community, to help develop their understanding of LGBTQIA+ communities and improve care.

Outcomes

The training sessions are now in their third year and have taken place online and in person. Topics covered include:

  • “What have I done to deserve this?” - addressing the needs of the LGBTQIA+ community living with a palliative illness
  • LGBTQIA+ palliative care awareness in a pandemic
  • LGBTQIA+ palliative care needs in older persons
  • The history of LGBTQIA+ within palliative care

Mark and Roger have run a tailored session for the Children’s hospice team, focusing on how to support younger people who are gender diverse (this might be a patient or their siblings).

The hospice also held an LGBTQIA+ awareness month, putting themed art around the building and holding a quiz.

Facilitators, challenges and advice

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Key facilitators

It’s important that work to improve equity of care is continuous rather than one-off. By holding regular sessions that are bespoke to the needs of hospice staff, Mark and Roger have maintained a focus on inclusion.

Challenges

People can make assumptions about LGBTQIA+ people, which affects the care provided. The training aims to bring staff towards a place of understanding and includes time for self-reflection so that people can consider how to work with their own unconscious bias.

Participants in the training can be afraid to ask questions, as they worry about causing offence or saying ‘the wrong thing’. Mark and Roger’s philosophy is that, as long as it is relevant, there is no such thing as a ‘bad’ question.

Tips and advice

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Always focus on the care of the individual. In hospices, we treat everyone differently according to their individual needs, but our overall approach is the same. Ask people "what is important to you?" – they want to tell us!

A good starting place is to develop a library with books to help people learn about LGBTQIA+ communities. This allows people to explore at their own pace. Storytelling helps make people’s experiences real, rather than being an abstract concept. 

You don't have to be an expert! The world is constantly changing so we are all learning together.

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