Planning for the Future- Information for people who have an advancing neurological Illness

A collaboration between Irish Hospice Foundation and the Neurological Alliance of Ireland (NAI) have produced an information booklet for people with an advancing neurological illness, who want to make plans for the future.  Prof. Orla Hardiman launched the booklet on 6th March during Brain Awareness Week. PSPA Ireland were delighted to be involved with the production of this booklet and feel that it will be a useful guide for our members and many others who may need  guidance in planning for the future. In Ireland over 800,000 people are living with a neurological illness and some of those conditions like PSP and CBD are life limiting.

Speaking at the launch Prof. Hardiman said “At present, many of these conditions cannot be cured, but symptoms can be treated and managed to minimise their effect on the quality of life. Living with these illnesses poses a unique set of challenges to the people involved but also to health professionals in understanding and defining what supports and services should be available. As a result, there is an increasing recognition of the need to adopt a palliative care approach to the needs of this group”.

The booklet is a direct result of the key recommendations from joint Neurological Alliance of Ireland (NAI) and the Irish Hospice Foundation (IHF) report, The Palliative Care needs with Advancing Neurological Diseases in Ireland, published in 2014, which identifies a clear need for a guide for individual families to understand their experiences and signpost them to the services available. The booklet contains information on advanced health care directives, planning legal affairs, talking to others, palliative care needs and also contains a list of organisations who can provide assistance.

Also speaking today Mags. Rodgers of the NAI said “The experience of living with an advancing neurological disease is unique to every individual and for their family. With this new booklet, patients now have key information and advice directly available to them. Our hope is patients will use it when determining what is right for them in terms of planning for the future.”

“I would also like to take this opportunity to thank our partners at the IHF and our extended expert working group (MS Ireland, Cheshire Ireland. PSPAssociation Ireland, Huntington’s Disease Association, University College Cork and the Irish Motor Neurone Disease Association) in helping us meet the challenge of bringing this booklet to fruition.”

Sharon Foley, CEO of the IHF,” We are very proud to be working with the NAI on delivering this booklet. Through our own advance planning booklet Think Ahead, we have seen the powerful impact in the people being in control of their wishes at the end of life. Giving people this platform to stay informed so they can make such difficult decisions not only gives patients peace of mind, but their families also”.

The guide is available here Planning for the future


About PSPA Ireland

PSPA Ireland is the national support organisation for people affected by the neurodegenerative brain diseases: Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
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