Research reveals experiences of disabled people with a terminal illness

by Caroline Weston Policy and Public Affairs Manager


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Research carried out for Marie Curie has found that terminally ill people with a disability are likely to have a poorer experience of end of life care than those without a disability. Only 22% of those surveyed by charity Disability Rights UK ranked end of life care services as ‘very good’. This compares unfavourably with the 43% of bereaved people who, in the most recent VOICES survey, described care in the last three months of life as either outstanding or excellent.


Talking's tough


One of the main challenges for disabled people with a terminal illness was communication.  Some found it difficult to talk about the end of life as a disabled person, with some feeling that healthcare professionals assumed that their quality of life was already poor and probably not worth living. And most of those surveyed said they weren’t supplied with information in a format appropriate to their disability. Some respondents said that professionals often didn’t understand how best to support disabled people when they were terminally ill.  The professionals who took part in the survey agreed this was an issue, but were keen to do more, providing examples of where they were trying to provide better support. The work included online surveys, a focus group and phone interviews.  Most of the people who took part had cared for a disabled person at the end of life, and more key findings are summarised in the graphic below. Although there were challenges in finding people to take part in the research, and the findings are based on a relatively small sample, the survey did reveal some interesting issues.


More work is needed


Our work is just a start, and it’s crucial that more research is done on the experiences of disabled people at the end of life. This is particularly important because the numbers of people who are terminally ill and have a disability are likely to increase. This is because the UK has an ageing population, and people are more likely to develop disabilities as they age. And yet, little research has been conducted to date on the experiences of disabled people at the end of life.  So we need to do more research into how to provide appropriate care for them, whatever their disability. More training for professionals is needed to ensure they understand how to best support disabled people living with a terminal illness.  There is also a need to ensure that disabled people are provided with the information they need about being terminally ill in a format they can access. Have you been affected by these issues? Then please get in touch. You might be a carer; someone with a terminal illness and a disability; or a healthcare professional. Contact Caroline Weston on caroline.weston@mariecurie.org.uk or 0207 091 6640.