the palliative care needs of people with advancing neurological disease in ireland'...

Authors: Mags Rogers, Neurological Alliance of Ireland, Marie Lynch, Irish Hospice Foundation,

John Weafer, Weafer Research Associates, Deirdre Shanagher, Irish Hospice Foundation.

Over 700,000 people in Ireland are living with an advancing neurological illness, many of which are life limiting. In 2008, the “Palliative Care for All” report highlighted the rationale of palliative care for people with non-malignant illnesses. In response, the Neurological Alliance of Ireland (NAI) and the Irish Hospice Foundation (IHF) commenced a study addressing the palliative care needs of people with advancing neurological disease in 2013*.

The Palliative Care Needs of People with Advancing

Neurological Disease in Ireland

Aim & Objectives

Next Steps

Introduction/Context

Participants noted that the palliative

approach to care needs to particularly

address the following patient needs:

Psychosocial

Nutritional

Equipment provision

Advance care planning

February 2015

Methods

14 interviews were carried out with

the following 7 NAI member

organisations:

•Brain Tumour Ireland.

•Cheshire Ireland.

•Huntington Disease Association of Ireland.

•Multiple Sclerosis Ireland.

•Motor Neurone Disease Association of

Ireland.

•Parkinson’s Association of Ireland.

•Progressive Supranuclear Palsy Association

(PSPA) Ireland

The data was analysed and

themes identified by using the

computer programme NVivo.

Findings

2: Investigate

how palliative

care needs are

identified

1: Investigate

understanding of

palliative care

3: Provide a greater

understanding of

the palliative care

needs of this group

4: Provide direction

for the requirements

to respond to needs

Study Aim: To explore &

identify the palliative care

needs of people with

advancing neurological

disease from the

perspective of NAI

member organisations

Participants noted that it can be

difficult to:

Access specialist palliative care

services

Discuss Palliative care matters

openly

Determine when to introduce the

palliative care approach

Include the palliative care approach

as part of routine care

Participants expressed that they

would like more:

Education

Awareness raising

Information, support and advice

In response, informational webpages have been developed and can be accessed via the Irish Hospice

Foundation web site: www.hospicefoundation.ie

This work provides direction for future research into the palliative care needs of people with advancing

neurological illnesses.

The findings provide direction for the formation of HSE policy guidelines with regard to meeting the palliative

care needs of people with an advancing neurological illness.

A round table meeting was held in December 2014. There was representation from clinicians, researchers,

voluntary organisations and the HSE. A report of this meeting will be available in March 2015.

For further details contact deirdre.shanagher@hospicefoundation.ie; marie.lynch@hospicefoundation.ie;

nai@eircom.net or www.hospicefoundation.ie

*The full report of the work is available via the IHF website: www.hospicefoundation.ie