Death can be a sensitive and difficult subject to talk about. For people with a learning disability, there is limited information, support and resources available to help them to understand death and dying, end-of-life (palliative) care, bereavement and grief.
When it comes to talking about one’s own mortality, it is a personal journey and is often complicated.
The Lindi-Lou project
Lin was supported for many years by Brandon in Cornwall. After being diagnosed with terminal cancer, she worked in co-production with Brandon’s Involvement Team to set up the Lindi-Lou project.
The Adventurers – our team of experts by experience – also shared their knowledge and taught us even more about death and bereavement from the perspective of someone with a learning disability.
Capacity to make decisions
Lin had a lot to tell us about decision making. When she decided she did not want to continue with her medical treatment, it was clear to those who knew Lin well – her family, her support staff and medical professionals – that she knew what she was doing and that she had the mental capacity to make that decision. They respected Lin’s wishes.
Through workshops and discussions about death, the project team agreed that it was important to document what people want at the end of their life. Although they think it’s a good idea to have an Advanced Care Plan, they expressed a preference to document their end-of-life wishes in a more creative way.
Above all, each person wants to be able to make their own decisions.
Bereavement and grief
The project team also explored and discussed bereavement and grief. In summary, they found:
- Bereavement affects people in different ways
- Bereavement services for people with a learning disability are not readily available
- Counsellors aren’t always confident to treat autistic people or people with a learning disability
- Large organisations and charities aren’t equipped to support people with a learning disability through grief
- Social care staff don’t always know where to get help
- People try to protect us too much – we don’t want to be protected, we want to be involved!
Lindi-Lou Project conclusions
The Lindi-Lou project found that what people with a learning disability want at the end of their life, is no different to anyone else. The one thing that is different, is that most people with a learning disability live in shared homes and have support staff.
We recognise that health and social care services don’t always get things right. The Lindi-Lou Project concluded that:
- The discharge process can be challenging and referrals aren’t always received in time.
- There are multiple reasons why people don’t always get the death they want, but one reason is lack of Advanced Care planning.
- Social care staff don’t always have the skills to support someone at the end of their life.
- Health professionals can be reluctant to involve people in end-of-life conversations.
Project recommendations
The Lindi-Lou Project makes the following recommendations:
- Explore different ways of Advanced Care planning
- Partnership working to train and equip staff with end-of-life support skills
- Involvement training for health professionals
Lin’s legacy
Now, thanks to Lin, Brandon’s Involvement Team has commissioned end-of-life training from a hospice so our support workers have the skills needed to ensure the people we support get the death they choose. We also host bereavement webinars, so staff are able to understand and support people around their grief.
The Brandon Adventurers are now delivering webinars at end-of-life events for End of Life Care and Bereavement. Following a recent webinar one of the participants said:
“The webinar challenged prejudices and increased recognition of how neglected the bereavement needs of those with learning disabilities have been.”
Brandon has also successfully set up a grief café for people with a learning disability in partnership with Cornwall Hospice Care, and we plan to establish more grief cafes in other areas in the future.
Lin sadly died at the end of 2024 but her legacy will have a far-reaching positive impact for years to come.
