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End of life care charity launches information for people with a learning difficulty

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Marie Curie has launched a series of easy-read booklets to help people with a learning difficulty to discuss concerns about death and dying, and to better understand end of life care.

The charity noted that those with a learning difficulty faced “particular challenges” if they, or someone close to them, came to need palliative and end of life care.

“Someone with a learning difficulty will make better informed decisions, if explanations come in the correct form”

Bill Noble

They may experience poorer quality care, because their specific needs are not always understood or fully considered, said Marie Curie.

It also highlighted that they may find it difficult to cope with adverse events affecting family and friends, for example death and grief.

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, noted the terminal illness charity.

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, said Marie Curie.

As a result, the charity said it had translated its most popular information into easy-read formats with the help of people with a learning difficulty and easy read experts.

The information has been “stripped right back to include crucial points only”, using jargon-free, straightforward language and presented alongside clear pictures, said the charity.

Marie Curie

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Bill Noble

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,” he said. “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,” added Professor Noble.

The 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 the easy-read booklets are available online and can be ordered in hard copy format from Marie Curie.

The charity’s palliative care knowledge zone also has free online resources for professionals who are caring for people with learning disabilities at the end of life.

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