Advancing Neurological Illness
Our Current Work On Neurological Illness
Along with the Neurological Alliance of Ireland IHF completed a project looking at the palliative care needs of people with advancing neurological conditions from the perspective of Neurological Alliance of Ireland member organisations. The report and key messages from this work is available by clicking on the first 2 pictures below. In November 2014 a Round table meeting was held to launch the report, share information and provide some direction. This led to the development of information booklet about planning for the future for people with neurological illness.This booklet is available by clicking on the 4th picture below.
Role Of Palliative Care In The Management Of Advancing Neurological Illness
People with advancing neurological illnesses such as Multiple Sclerosis, Motor Neuron Disease and Parkinson’s Disease can experience a range of symptoms which cause discomfort and distress. These symptoms include reduced mobility, difficulty swallowing and communication difficulties.
Other Work and Research
In treating these symptoms it is important to offer a care approach that addresses overall patient comfort.
- Guidelines for physiotherapy management of Motor Neuron Disease (Amyotrophic Lateral Sclerosis) (2013) have been funded by the Irish Hospice Foundation and developed by Geraldine O’Callaghan Senior physiotherapist Longford. These are available to view here. For more information contact Geraldine at: firstname.lastname@example.org
- Irish Hospice Foundation provided funding in 2013 for a study led by Dr Suzanne Timmons, Consultant Geriatrician and Senior lecturer UCC titled; Palliative care needs in Parkinson’s disease: an initiative to raise cultural awareness, educate healthcare workers and provide cohesive support to patients and their carers/families. The guidelines “Palliative care in People with Parkinson’s disease” are available here. For more information contact Siobhan Fox PhD at: S.Fox@UCC.ie
- Irish Hospice Foundation provided funding for a study carried out by Dr Mary Rabbitte, Ursula Bates and Dr Michael Keane, Our Ladys Hospice & Care Services titled; A Qualitative Study of Psychological and Psychotherapeutic Approaches for Motor Neuron Disease (MND) Patients. For more information see poster.
- The Irish Hospice Foundation provided funding for a “Dying with Dignity in Disability Services in Ireland” (2013) project in Cheshire Ireland. The project aimed to increase organisational capacity to support and respond to end of life treatment choices for people with neurological conditions and was led by Amanda Callan.
- The AIIHPC (All Ireland Institute of Hospice and Palliative Care) awarded a clinical research fellowship to physiotherapist David Hegarty, Dublin (2013). David lead a study titled; Physiotherapy led palliative exercise programme for Parkinson’s disease (PEP-PD) patients in an out-patient setting: a feasibility study. For more information contact David at: email@example.com
- The AIIHPC (All Ireland Institute of Hospice and Palliative Care) and HSC Research & Development Public Health Agency are funding a PhD study being carried out by Helen Kerr titled; Transition to adult services by young people with life-limiting conditions in Belfast and Dublin: a realist evaluation using mixed methods (TASYL study). For more information see abstract or contact Helen at: firstname.lastname@example.org
- BMJ Blog “When Parkinson’s Disease meets Dementia: A Palliative Care Research Priority” Here
- The British Motor Neurone Disease Association (MNDA) has published a new guide “End of life. A guide for people with motor neurone disease” which is a “comprehensive and candid guide to help people with MND to plan ahead and communicate their end of life decisions to family and professionals.”
- Neuro-palliative pointers Geri-pal blog entry by Dr Laura Koehn available here.