Tell us about your experiences of disability and end of life care

Marie Curie is carrying out research into end of life care for disabled people and we need your help.

We are carrying out research with Disability Rights UK into what happens to people with a disability when they need end of life care. For this research, we are interested in hearing about people who had a disability before they needed end of life care. We are particularly interested in hearing about disabled people who were already receiving care for their impairment and what happened when they then needed end of life care.

Why are we doing this?

We want to find out more about disabled people’s experiences of end of life care so that we can identify if there are any barriers that prevent them from experiencing a good death, compared with non-disabled people. We are interested in finding out how disabled people move from their typical care arrangements to new ones that would also specifically support their end of life care. We would also like to discover how easily disabled people, regardless of impairment, achieve support at the end of their lives where they have previously not been in touch with any system of care and support.

How to get involved

If you are disabled and currently receiving end of life care, or have cared for a disabled person at the end of their life, we would like to hear about your experiences. If you are a health or social care professional and have provided end of life care for a disabled person, we would like to hear from you as well. Please visit the Disability Rights UK website to fill in the survey. If you prefer, you can complete it over the phone – details are available on the survey’s page.

All surveys will be treated in complete confidence. There will also be focus groups taking place across the UK over the next few months to explore people’s experiences in more detail. These will run from 11am–3pm, with lunch, expenses and a small fee provided. If you are interested in taking part, details of how to sign up are available on the Disability Rights UK website. The survey will run until 23 April. The findings of this research will be written up as a report containing recommendations about what can be done to ensure that disabled people can experience a good death. We hope to publish it later this year.