The guide provides comprehensive and candid information on:
- the benefits of planning ahead
- how to communicate your wishes, preferences and needs with family, friends and health and social care professionals
- how to access support
- how to put personal affairs in order
- information about medical treatments and what can be done if they are no longer helping.
Dr Bee Wee, National Clinical Director for End of Life Care at NHS England, called it: “a much needed guide that will act as a bridge between families affected by MND and the health and care professionals who support them.
“It discusses complex decisions using honest and straightforward language, yet with sufficient detail to be genuinely helpful…This guide will help people to feel more in control of the options available to them.”
The booklet contains comments from patients and professionals, including from Debi Adams, Clinical Nurse Specialist in Palliative Neurology, Saint Catherine’s Hospice, Scarborough, who says: “I think this booklet tackles end of life issues in MND with great courage and sensitivity. As a palliative care nurse I found this information very useful to apply in my practice.”
“I found this extremely helpful. Especially as a springboard for further discussion with professionals,” comments a person living with MND.
The guide can be downloaded from the MND Association website, or can be ordered in print via the MND Connect helpline (08457 626262 or mndconnect@mndassociation.org) The guide is free for people with or affected by MND.
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