Saturday 20 July 2019

Caring for people who live with Motor Neuron Disease

Jessica Farry

There are currently three people in Sligo living with Motor Neuron Disease. There are currently over 370 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of symptom onset.

Eithne Cawley, MND Nurse Specialist, works alongside the Irish Motor Neurone Disease Association for almost a decade, her background is within the area of Neurology, her Nurse Training began in Beaumont Hospital, working along experts within the area of MND and this is where her interest began.

There are currently 4 Nurses covering the Republic of Ireland, only recently a fourth Nurse was employed by the IMNDA, Louise, thanks to the infamous Fr Tony Coote, who took on the mammoth challenge of travelling from Donegal to Cork in his wheelchair to create vital funds and awareness for MND/IMNDA

Eithne travels across the country providing support for clients & families living with MND.

She is the MND nurse for Sligo, Roscommon, Donegal, Leitrim, Longford, Cavan, Monaghan, Kildare and Louth.

Eithne told The Sligo Champion: "I am the link in the provision of care from diagnosis, from secondary care to primary care. Follow up in the home is pivotal, I have to prioritise and organise home visits for clients as determined by both their clinical and psychosocial needs."

Being a Specialist Nurse means that she also plays an active role in both client/family and health care professional education to ensure the best standard and practice of Client care is delivered at all times.

"It is imperative to keep abreast and up-to-date with best practice, research and developments within the area of MND care.

"The Nursing service is active in its total approach to care, embracing physical, social, and spiritual elements.

"It focuses on enhancement of quality of life for the client and support for the family and includes the management of distressing symptoms and the provision of support and care throughout the journey of MND," Eithne said.

The MND Nurse is central to the client and family, and Eithne points out that she endeavours to co-ordinate a service that provides continuity of care for a case load of clients in collaboration with local health care professionals and carers, especially those with palliative care needs. This applies to acute and community care settings.

She also acts as an informed resource for health care professionals, involved in the care of the clients living with MND.

Eithne works very closely with multidisciplinary team across the country.

The Multidisciplinary Team (MDT) comprises of a group of clinical professionals who work within a hospital and community settings and Eithne works in collaboration with every member of that team.

They include; Neurologists, Occupational Therapist, (OT), Public Health Nursing, (PHN), Physiotherapist, (PT), Speech and Language Therapist, (SALT), Dietician, Medical Social Worker, (MSW), Psychotherapist, Palliative Care and General Practitioner.

They work as an integrated unit and the aim is to provide flexible and accessible care for clients their families and carers with MND. The MDT expertise required by clients with MND will very much depend on diagnosis trajectory.

Eithne says that some clients and their families hesitate to seek or accept help and advice, asking 'what is the point' if there is no cure for MND.

"There is so much can be done to overcome and manage what seems the worst possible diagnosis.

"There is an abundance of help. The IMNDA is solely dedicated to working on behalf of supporting people living with MND. Upon diagnosis the client is advised to register with the IMNDA, once this happens all services are co-ordinated."

The IMNDA assists with

  • Access to IMNDA Nurse Specialist, home visit as required, ongoing support & advice.
  • Provision of specialised equipment on loan to all clients once recommended by members of MDT.
  • Access to home care supplementary financial support and family care giver support programme.
  • Counselling support for both the client & family.
  • Client information folder, which contains a more comprehensive overview of MND, support services as well as a detailed section on how discuss sharing the diagnosis sharing with other members of family.

Eithne says she is in a very privileged position to work alongside such a supportive organisation like the IMNDA.

"I am utterly useless on my own. This is all team work. The IMNDA work tirelessly & effortlessly in relation to creating awareness , raising funds and above all providing support to clients, families and carers diagnosed with MND.

She is very often asked how tough it is to work with people with MND, to which she says: "I am always humbled by people living with this disease, in the depths of despair and in the darkest corners a light seems to always shine.

"It would be remiss of me to say 'if it was me how would I feel' and quite frankly I often wonder? Something I heard recently and for sure resonated with me - 'There is no use trying to describe it, you have to feel it to understand' and does that not say it all."

Sligo Champion