TWO leading charities are calling on local residents to have their say on the care provided to people with both a disability and terminal illness as they approach the end of their life.
Marie Curie Cancer Care and Disability Rights UK are keen to sign up participants for a focus group at the Marie Curie Hospice, Cardiff and the Vale in Penarth on Tuesday, June 24, involving carers of disabled people who need end of life care, as well as those who are living with a disability and are already receiving care for a terminal illness.
Research published earlier this year revealed that UK families are not getting the support they need to cope with the overwhelming demands of caring for someone with a terminal illness.
It’s intended that this focus group, which is being repeated at three other locations across the UK, will give a much-needed voice to carers and particularly this underrepresented group.
The research findings will enable health professionals to better understand and improve the provision of care for terminally ill disabled people across the UK.
Caroline Weston from Marie Curie, said:
“It’s important that people living with a disability, regardless of their impairment, have access to good quality end of life care. The aim of this research is to get a better understanding of any barriers that prevent people with a disability from experiencing a good death compared to non-disabled people.
“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. Your voice will help highlight this issue, and help us campaign for better provision of care in this area.”
Mark Shrimpton from Disability Rights UK, said:
“Disability Rights UK is delighted to be working with Marie Curie on this crucial issue. Disabled people continue to face barriers to inclusion across society.
"Whilst death and terminal illness are very difficult issues to deal with, we think this research and allied focus groups will give all concerned the opportunity to identify and implement best practice that will, in the future, enable us to experience barrier free palliative care in the last days of our lives.
"We strongly encourage disabled people, carers and clinicians to involve themselves in this work, which is featured on the home page of our web site at www.disabilityrightsuk.org.”
To sign up for the focus group, please visit http://www.disabilityrightsuk.org/disability-and-end-life-survey or call Mark Shrimpton on 07778 185528. The group will meet on Tuesday, June 24 between 11am – 3pm at the Marie Curie Hospice, Cardiff and the Vale, Bridgeman Road, Penarth. Lunch and travel expenses will be covered, and a small fee will be paid for all who participate.