Currently there are 700,000 people in Ireland living with a neurological condition – such as Multiple Sclerosis, Motor Neurone Disease, Parkinson’s or Alzheimer’s – and many of those with progressive neurological conditions will need access to palliative care.
However, a new report by the Irish Hospice Foundation (IHF) and Neurological Alliance of Ireland (NAI) has identified deficiencies in the current level of service available.
The report is based on the interviews with seven member NAI organisations and describes varying levels of access to palliative care around the country. One of the organisations interviewed commented: “There is huge inequality around Ireland regarding the availability of palliative care. It very much depends on where you live.”
The NAI is now calling for protocols and pathways to be developed, and increased resourcing and training opportunities for neurology and specialist palliative care services to support people with advancing neurological disease.
The study says there is a need for earlier referral of patients to palliative care services and advises that a multi-disciplinary care approach is needed for those suffering from neurological conditions.
Organisations interviewed said nursing home settings are often unsuitable for those with advanced neurological disease, and that neurology and palliative care services are fragmented and concentrated in a few specialist centres situated in cities.
Other issues highlighted are:
- a level of uncertainty around when palliative care should begin
- a lack of understanding of the needs of individuals with advanced neurological disease and a need for training for all those who work with them
- the sensitive nature of discussing palliative care
- the important role of voluntary organisations in supporting people with a life limiting neurological condition.
The full report can be downloaded from the Irish Hospice Foundation’s website.
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