ENSURING SUSTAINABILITY OF CARE FOR THOSE WITH AMYOTROPHIC LATERAL SCLERSOSIS (ALS) /MOTOR NEURONE DISEASE

The following text is a summary of a larger document putting forward the case for supporting the internationally recognized high quality service for those with ALS/MND by providing sustainable funding for both the clinic, and the IMNDA nursing service, and the IMNDA equipment bank. The document in full can be found by clicking here

Amyotrophic Lateral Sclerosis (ALS) also known as Motor Neuron Disease (MND) is a progressive neurodegenerative condition with a life expectancy of 3 years from first symptom. As diagnosis is often delayed by up to 15 months, most patients have less than 2 years of life expectancy from the time of diagnosis.

ALS fulfils the criteria for designation as a Rare Disease. The lifetime risk of developing ALS in Ireland is 1:300. The incidence is 2.7/100,000, which is close to that of Multiple Sclerosis. Approximately 140 patients are diagnosed with ALS in Ireland every year, and approximately 400 patients are living with the condition.

Evidence based guidelines from the American Academy of Neurology, the European Academy of Neurology and the UK NICE recommend that patients with ALS/MND should be managed by specialist multidisciplinary clinics.

In Ireland, this service is provided by the ALS/MND Group at Beaumont Hospital, which was the first centre in the world to show that patients have improved outcomes when treated in a multidisciplinary setting.   The weekly clinic provides integrated care, with onsite specialist ALS/MND physicians, specialist health care professionals including neuropsychologists, experts in clinical measurement (respiratory function and functional assessment) and with representatives from the voluntary sector (IMNDA) as integrated members of the team.   Patients receive coordinated care, with additional home-based outreach services including home visits provide by specialist nurses, psychologists and physicians.

This is the only service of its kind in the country and multidisciplinary care is currently provided for over 80% of all ALS/MND patients living in Ireland.

The Centre has embedded research into clinical practice, has an international reputation as a centre of excellence, and regularly receives referrals from other jurisdictions. For these reasons, The ALS /MND service at Beaumont Hospital has been recognized recently as a National Centre of Expertise by the RCPI/HSE Rare Disease Programme and has been endorsed by the HSE and Department of Health.  Clinical staff have participated in the publication of a series of evidence-based guidelines for international use, provide ongoing in-service training, and have generated substantive guidelines for health care professionals.   The service has also contributed to the HSE Neurology Programme Model of Care and has provided guidelines for best practice for management of ALS/MND in Ireland.

Research is embedded into clinical practice and changes management (e.g. use of message banking for patients with evolving dysarthria; prospective studies of carer burden; validation of novel screening tools to assess cognitive and behavioural change in ALS; comparison of cough assists with breath stacking; evaluation and modification of staging protocols; development of a new scale to assess behavioural change in ALS; etc).

Despite its recognition as a National Centre by the Rare Disease Programme, the Centre has no designated ring-fenced funding, and most of the clinical staff are funded from research grants and philanthropic donations.   Moreover, although patient care is coordinated in close collaboration with three specialist nurses from the Irish Motor Neurone Disease Association, the salaries for these their nurses is generated entirely by fundraising events.   Equipment provided free of charge by the IMNDA is also purchased from fundraising, with limited support from exchequer funds.