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
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
"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 firstname.lastname@example.org.
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:
Disabilities - please note, people with a learning disability
will need support to complete the survey.
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.email@example.com.