Marie Curie launches information for people with a learning disability

Marie Curie has launched a series of easy read booklets for people with a learning disability. The booklets aim to help people to discuss their concerns about death and dying, and get the care and support they need.

People with a learning disability face particular challenges if they or someone close to them, come to need palliative and end of life care. They may experience poorer quality care, because their specific needs are not always understood or fully considered; and may find it difficult to cope with adverse events, like death and grief.

That's why Marie Curie has adapted its most popular information into easy read with the input of easy read experts, as well as people with a learning disability. The charity has stripped down its information about living with a terminal illness and caring for someone with a terminal illness to only include crucial points about these issues. The booklets use straightforward, jargon-free language, and clear pictures to support the information in an order that makes most sense to the reader.

Professor Bill Noble, Executive Medical Director at Marie Curie, said: "For most people, talking about death and dying is difficult.  There is a lot of information to digest and everyone has the right to information in the form that suits their needs. 

"The more open we are about death and dying, the more time people have to discuss their needs and concerns.  Having access to straight-forward information that enables straight-forward, jargon-free conversations could benefit anyone struggling to come to turns with a terminal illness. 

"It's important to remember that someone who has a learning difficulty will make better informed decisions about their care and treatment, if explanations they need come in the correct form."

All the booklets can be downloaded online, or you can order hard copies by emailing review@mariecurie.org.uk.

Looking at the needs of people living with a terminal illness in Cardiff and the Vale of Glamorgan

In South Wales, Marie Curie's Big Lottery Funded project 'Including Diverse Communities in End of Life Care' is working to improve service accessibility for people with learning disabilities. The project has been working with people with learning disabilities from local groups such as People First and Learning Disability Wales to gather information on their views and experiences of end of life care.

Monica Reardon, Marie Curie's project manager, said: "We know that people from certain groups, such as people with learning disabilities do not always get access to the right information, care or support to meet their needs.  Our project will help to identify barriers to people with learning disabilities accessing Marie Curie's service and implement changes which will ensure high quality care is accessible to everyone.

"We hope to develop best practice guidelines around supporting people with learning disabilities that can be shared in Wales and more widely."

Share your views on end of life care

If you would like to share your views on end of life care issues for any of these groups, please complete one of these online surveys:

Learning Disabilities - please note, people with a learning disability will need support to complete the survey.

Dementia        

Religious or non-religious beliefs

If you are interested in participating in Marie Curie's 'Including Diverse Communities in End of Life Care' project or would like more information about how Marie Curie can support you, please contact Monica Reardon on 02920 426025 or email at Monica.reardon@mariecurie.org.uk.