Increase annual statutory investment in the MS Care Centre by €600,000[1]
The National MS Care Centre is a 12 bedded unit which provides respite care to people living with Multiple Sclerosis and other progressive neurological conditions. €600,000 in additional funding has the potential to see The Care Centre open 350 days per annum, providing an additional 1,128 bed nights annually.
The sustained reduction in services since the COVID-19 pandemic, has placed a burden on both people living with Multiple Sclerosis and their families which saw family carers, including those who may not have performed caring duties prior to the pandemic, having to increase their caring responsibilities and duties, sometimes in addition to other familial and employment related obligations. As levels of home care and PA hours have not returned to pre-pandemic levels, the needs of these families have been abandoned with no clarity as to if / when supports will return to pre-pandemic levels.
The Care Centre plays a crucial role in ensuring family carers are supported by relieving stress on carers and providing people living with Multiple Sclerosis and other progressive neurological conditions with the opportunity to avail of appropriate respite care. Supporting Carers in this way will help to ensure the sustainability of family carers’ support.
The Irish State is estimated to spend €20 billion on an annual basis due to the 500,000 family carers that provide unpaid care each week to the elderly and those living with disability or illness[2]. They play a vital role in the provision of informal care. Despite their significant contribution to society, they are left feeling invisible and forgotten about (Family Carers Ireland, 2020). Caring can have an impact on the social and work life or carers (O’Sullivan, 2019). 68% of carers feel their health has suffered as a result of caring (Family Carers Ireland, College of Psychiatrists of Ireland & University College Dublin, 2019).
Respite care provides carers with the opportunity to focus on their own needs for a time.
1 MS Ireland Care Centre Business Case https://www.ms-society.ie/sites/default/files/2019-06/MS%20Care%20Centre%20Report%20-%20FINAL.pdf
2 Family Carers Ireland State of Care 2020 https://familycarers.ie/media/2022/family-carers-irela20.p nd-state-of-caring-20df
The National MS Care Centre is HIQA accredited and fully equipped to meet the needs of people living with Multiple Sclerosis and offers a homely environment in which people living with Multiple Sclerosis can interact with each other, engage in activities, and be cared for in a comfortable and safe environment. MS Ireland believes that all people who require respite care in The National MS Care Centre should have access to it. In order to deliver this to our community members, additional annual statutory funding is essential.
Further information on this can be found in MS Ireland’s Care Centre Business Case https://www.ms-society.ie/what-we-do/ms-care-centre/ms-care-centre/care-centre-business-case
Sustainable funding for national physiotherapy services for people with Multiple Sclerosis, and other neurological conditions
We propose to deliver a sustainable, national physiotherapy service provided by a team of specialist physiotherapists directly employed by MS Ireland and delivered at a regional level using a blend of ‘online’ and ‘in-person’ programmes and services.
Physical activity is essential in enabling people living with neurological conditions, including MS to remain well in their communities and in preventing the development of secondary health issues. There is also a void of post-acute and post-community interventions to promote patients’ health through physical activity.
This would address this dual pronged need, which would significantly improve services for people living with Multiple Sclerosis and other progressive neurological conditions, and in doing so, promote their well-being while also significantly reducing costs elsewhere in the health service. These programmes would represent an integration between health sector and community sector care.
There are more than 700,000 people living with neurological conditions in Ireland, and these account for one in eight consultations in primary care and one in five emergency medical admissions to hospital.
Of these, in excess of 9,000 people live with MS, which is one of the largest progressive neurological diagnoses that primarily feature physical disability. In any three-month period over 50% of people living with Multiple Sclerosis will fall, which is similar to the falls rate of people over the age of 85. Our physiotherapy programmes teach people how to analyse their falls and give them management strategies to prevent future falls.
Our research shows that delaying and reducing disability due to MS could reduce costs to the Irish health system annually by €19m. Preventing four hip fractures which can cost between €12,000 and €22,000 each depending on severity, would equate to the cost of one Senior Physiotherapist salary.
MS Ireland has the expertise and network to partner with the Department of Health and the HSE to deliver these services and bring very significant benefit to many people, and improved efficiencies for our health services.
MS Ireland has a proven track record of delivering successful, research and evidence based health promoting physical activity programmes in an online forum, which allows us to deliver a physiotherapy service on a national scale. This positive experience includes the SláinteCare Integration Fund project, ActiveNeuro, which included 49 programmes with 440 total participants, that had a 90% attendance rate and participant satisfaction rate of 100%.
The funding required is for one Senior Physiotherapist employed by MS Ireland, plus running costs in each HSE CHO area, together with a national manager and administrator. The cost across all nine CHOs is €880,000 per annum. There is flexibility to either fund nationwide, or to scale up on a phased basis over a number of years.
We forecast that this investment would deliver 3,726 individual appointments and 1,458 participants in group programmes annually. This service would not only reach people living with Multiple Sclerosis, but also many people with other conditions including Parkinson’s Disease, Early Onset Parkinson’s Disease and Stroke.
This service would comprise group health promoting physical activity and symptom management strategies alongside individual treatment to adapt, maintain and prevent. Thus, realising the SláinteCare vision of providing the right care in the right place at the right time, and by the right people – our team of specialised physiotherapists.
A further 100 neurology nurses in order to address unacceptable waiting periods, delays with diagnosis and treatment.
We recommend investment in neurology nurses to address the issue of waiting times and ensure that patients have access to the specialist support they need to manage their conditions. MS Ireland believes that all people living with Multiple Sclerosis should have appropriate access to an MS specialist nursing service.
The Neurological Alliance of Ireland is the umbrella organisation for neurology patient organisations in Ireland. MS Ireland as a member of this organisation has been supporting the Patients Deserve Better Campaign which aims to highlight the lack of neurology nurses across the country.
There are currently over 20,000 patients on the neurology waiting list, including those with MS. In addition to this, people with long-term neurological conditions such as MS have limited access to the services that help them manage their condition, resulting in unnecessary hospital admissions and delays in necessary adjustments in medication.
Neurology nurses, including MS nurses, have a significant impact on patients, increasing accessibility of healthcare and improving condition management.
Ireland currently has only 41.5 WTE neurology nurses, however in line with local and international recommendations this should be at least 142 including 29 dedicated MS nurses.
MS Ireland echoes the asks of the Disability Federation of Ireland with a focus on:
- An increase in all core social protection rates as per the recommendations of Vincentian Partnership for Social Justice Minimum Essential Standard of Living (MESL) and other anti-poverty organisations, to keep up with inflation and prevent a rise in inequality and poverty for those on low and fixed incomes.
- The introduction of a cost of disability payment of at a minimum of €20 a week for those on Disability-related payments, as an interim measure to start to address the cost of disability.
A recent study being carried out by MS Ireland found that as disability severity increases, so too does the economic burden. The total cost associated with moderate MS (€66,567) was 75% higher than our estimated cost for those with mild MS (€28,007); while the cost associated with severe MS was approximately 3.4 times the total cost for those with mild MS (€131,577). However, the annual basic income provided by Disability Allowance in 2022 is €10,816.
Further Information
This submission has been prepared by Alison Cotter, Advocacy & Research Officer, MS Ireland. Questions and comments can be directed to alisonc@ms-society.ie.
[1] MS Ireland Care Centre Business Case https://www.ms-society.ie/sites/default/files/2019-06/MS%20Care%20Centre%20Report%20-%20FINAL.pdf
[2]Family Carers Ireland State of Care 2020 https://familycarers.ie/media/2022/family-carers-irela20.p nd-state-of-caring-20df