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Author: Rebecca Kelly
07 March 2018
  • Deirdre Shanagher IHF, Mags Rogers NAI, Tracy Hutchin Irish Motor Neuron Disease Association, Sharon Foley IHF, Professor Orla Hardiman, Patricia Towey Huntingtons Disease Association of Ireland and Caroline Dooley-Martyn PSPAssociation.

A new booklet to help people with advancing neurological illnesses to plan for all aspects of their future was officially launched this week as part of National Brain Awareness Week.

Planning for the Future: Information for People Who Have an Advancing Neurological Illness, an initiative of the Neurological Alliance of Ireland (NAI) and the Irish Hospice Foundation (IHF) was launched by Professor of Neurology at Trinity College Dublin, Orla Hardiman, at the Alex Hotel in Dublin.

Over 800,000 Irish people are living with neurological conditions and some of those conditions are life limiting. Advancing neurological illnesses is the name given to a group of neurological illnesses that affect the brain and spinal cord.

Speaking at the launch, Professor 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 one of the key recommendations from joint the NAI/IHF report,  The Palliative Care Needs of People with Advancing Neurological Disease in Ireland, published in 2014, which identified a clear need for a guide for individuals and their families to understand their experience and signpost them to services available. The booklet contains information on advance healthcare directives, planning legal affairs, talking to others, palliative care needs and a list of organisations who can provide assistance.

Also speaking today, Mags Rogers, Executive Director of the NAI said: ‘The experience of living with an advancing neurological disease is unique for 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 their future.’

‘I would also like to take this opportunity to thank to our partners at the IHF and our extended expert working group (MS Ireland, Cheshire Ireland, PSPAssociation Ireland, Huntington’s Disease Association of Ireland, 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 of 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.’

You can download Planning for the Future: Information For People Who Have An Advancing Neurological Illness here.

You can read more about Think Ahead here.

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