Launch of the Palliative Care Needs of Parkinson's Disease Guidelines

  • 29 Apr 2016

Guidelines on the assessment and management of the palliative care needs of Parkinson’s disease and Parkinsonian syndromes, were launched in University College Cork’s College of Medicine and Health on 26 April 2016.

April is world Parkinson’s Awareness month, and approximately 12,000 people in Ireland are living with Parkinson’s disease. The guidelines, “Palliative care in People with Parkinson’s disease:  Guidelines for professional healthcare workers on the assessment and management of palliative care needs in Parkinson’s disease and related Parkinsonian syndromes,” were assembled by an advisory group of national and international experts.

Parkinson’s disease is a progressive neurodegenerative condition resulting from the death of the dopamine producing brain cells, and is currently incurable. Those afflicted with Parkinson’s disease can benefit from a palliative care approach and/or Specialist Palliative Care input; yet traditionally, palliative care has been viewed as end-of-life care and associated with cancer or hospice care. Furthermore, many health care workers have been unsure of the appropriateness of palliative care in Parkinson’s disease, and a series of research studies conducted by UCC’s Centre for Gerontology and Rehabilitation indicated a need for healthcare workers to have better training and skills in palliative care for people with Parkinson’s disease.  It is hoped that these guidelines will result in improved care for people with Parkinson’s disease and their families.

 

Dr. Suzanne Timmons, Senior Lecturer, Centre for Gerontology and Rehabilitation, School of Medicine, UCC commented: “Many healthcare workers are involved in the care of a person with Parkinson’s disease, across primary, acute and long-term care settings. We have previously performed research which indicated that many healthcare workers in Ireland were aware of people with Parkinson’s disease having significant unmet palliative care needs. However, the healthcare workers reported little previous training in palliative care for Parkinson’s disease, and they were sometimes unsure of how and when to adopt a palliative care approach in Parkinson’s disease. Healthcare workers, and people with Parkinson’s disease along with their carers and families, have all indicated that formal guidelines would be an important step in improving healthcare workers’ awareness and practice of palliative care for Parkinson’s disease. The guidelines have been endorsed by, and will be made available electronically through, the HSE's National Clinical Programmes in Older Persons, Neurology and Palliative Care, which will facilitate healthcare workers' ready access to the guidelines."

 

The Irish Hospice Foundation funded the research and development of these guidelines. Paula Gilmore, CEO Parkinson’s Association of Ireland stated that “On behalf of the Parkinson’s Association of Ireland we are delighted to see these guidelines being launched. Parkinson’s disease is a progressive neurological disorder. It is not currently curable and affects approximately 12,000 people in Ireland. This figure is expected to double over the next 20 years. As Parkinson's disease progresses and symptoms no longer respond well to treatment, daily living and quality of life become more difficult. People with Parkinson’s disease and their carers may need more help to manage their symptoms and physical requirements as well as their psychological and emotional needs. Palliative care should mean that people affected by Parkinson's and their carers have the best quality of life possible, and the launch of these guidelines will help healthcare workers to best meet the needs of people with Parkinson’s disease through a palliative care approach, or referral to specialist palliative care if necessary.”

 

For more information see the Palliative Care Parkinsons UCC website


The guidelines can be viewed here:

PD guidelines PDF

 

 

 

 

 

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