Marie Curie supports people with learning disabilities affected by terminal illness in Wales

Marie Curie has launched a series of easy read booklets for people with a learning difficulty and those who have difficulty with understanding or processing information, to help them discuss their concerns about death and dying, and get the care and support they need.

People with a learning difficulty 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 translated its most popular information into easy read formats with the help of people with a learning difficulty and easy read experts¹. The information has been stripped right back to include crucial points only. These points use jargon-free, straightforward language and are presented alongside clear pictures in the order that makes most sense to the reader.

Some people with a learning disability may not be experienced in making their own choices, so end of life planning may also be a slower process. In cases like this, it is particularly important to make sure that people have access to information they can understand to help with these decisions.

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.”

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 Disabilities 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. "

If you would like to find out more about this project, please contact Monica Reardon on Monica.reardon@mariecurie.org.uk or visit the section called 'Support for people with diverse needs' on our Cardiff hospice page.

Marie Curie’s range of easy read information   includes:

‘Living with an illness that you will probably die from’ – How to keep comfortable, healthy and happy; Who can help? Looking after yourself; Your feelings; Work, money and getting the best out of life; Money and work; and Your family and friends. 

‘Caring for someone with an illness they will probably die from’ – Who can help?  Looking after yourself; and Money and work.

All booklets are available online and can be ordered in hard copy format from Marie Curie.

Anyone can phone the Marie Curie Support Line on 0800 090 2309 to talk about what is happening and how they are feeling.  It is open 8am-6pm Monday to Friday and 11am to 5pm on Saturdays.

The Marie Curie Palliative Care Knowledge Zone also has free and easy to access online resources for professionals who are caring for people with learning disabilities at the end of life.

About Marie Curie 

Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. 

Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS. 

For more information visit www.mariecurie.org.uk

Like us at www.facebook.com/mariecurieuk

Follow us on www.twitter.com/mariecurieuk 

Reference:

Credits: The EasyRead booklets were written by Marie Curie. They meet the European EasyRead Standard. They have been user-checked by the Making It Easier Group of people with learning disabilities. Artwork includes material from the Inspired EasyRead Collection and cannot be used anywhere else without written permission from Inspired Services. www.inspired.pics

Contact Information

Tracy Barrett
Senior Media, PR & Campaigns Manager
Marie Curie – Care and support through terminal illness
T: 0207 599 7292
M: 07515 135 353
E: tracy.barrett@mariecurie.org.uk