Current Advocacy issues
MS Ireland is committed to being the voice for people affected by MS and driving an advocacy agenda that includes areas of greatest concern to people affected by the condition. This page aims to outline some of the current advocacy issues that MS Ireland is engaged in and how you can get involved!
MS Care Centre
The MS Care Centre is the only dedicated respite centre for people living with Multiple Sclerosis in Ireland and is a place for residents to learn more about their MS and find ways to self-manage their condition. It offers short-term respite care to people living with MS and other neurological conditions, therapeutic services, neurology assessments and many social activities in a homely environment in the suburbs of Dublin. The MS Care Centre not only provides people living with MS and their caregivers a break. Our ‘home away from home’ is a place of relaxation for people from all over Ireland. This fully-equipped, state-of-the-art respite facility admits and welcomes 400 people annually.
Unfortunately, a decrease in both statutory and fundraised income over the past number of years has meant that MS Ireland's Care Centre has only been open 40 weeks per year. MS Ireland are seeking further annual investment which will allow the centre to open 350 days per year, allowing additional people with MS the chance to avail of a place.
- The MS Care Centre is a 12 bedded unit which provides respite care for people with MS and other progressive neurological conditions.
- At present, the MS Care Centre is only open for 40 weeks per year as a result of decreases in both Statutory and fundraised income over the last number of years. We want to return to a situation where we are open 50 weeks of the year to meet increased demand.
- To restore the MS Care Centre to operating 350 days, providing an additional 1,128 bed nights per year, we require an increase in funding of only €600,000 per annum. A very small investment when one considers the impact our respite centre can have on the lives of people living with MS and their caregivers, as well as the overall reduction of the costs of MS to society.
Have Your Say! Please help MS Ireland to secure this funding and help open the service to even more people living with MS by contacting your local representative. We have a sample letter/email which you can use to contact your local TD. We encourage you to personalise your letter and share any personal experiences which may support our request.You can find the names and contact details for your local TDs at www.whoismyTD.com
MS Care centre Business Case
We want to restore the MS Care Centre to operating for 50 weeks of the year to meet increasing demand.
Access to Medications
In Ireland, people living with MS are waiting longer for access to medicines than those who live in other European countries. The process of having medicines made publically available in Ireland is lengthy. On average this process takes 348 days to complete, with some cases taking over 4 years. We believe that people living with MS should have access to the right medication at the right time.
- Sativex, a cannabis-based medication to treat limb spasticity in MS, was given a license in Ireland in 2014 but is still not available.
- There are exciting new treatments for MS in the pipeline, including Ocrelizumab, the first ever treatment for primary progressive MS. However there are currently lengthy delays in making new medications available in Ireland and in MS, delays in treatment can mean preventable deterioration in someone’s condition. What can be done to improve the system so that Ocrelizumab and other innovative MS treatments are made available to people with MS in Ireland as soon as possible after receiving a license?
- MS Ireland, together with Roche, have launched the website www.patientsdeservebetter.ie which people living with MS can visit and contact their TDs directly in relation to the issue of access to medicines
Get involved: Visit www.patientsdeservebetter.ie and contact your local TDs directly in relation to the issue of access to medicines.
We have a sample letter/email which you can use to contact your local TD. We encourage you to personalise your letter and share any personal experiences which may support our request. You can find the names and contact details for your local TDs at www.whoismyTD.com
MS Ireland, in partnership with Roche, opened the MS Café and MS Café Roadshow as part of the patients deserve better campaign with the aim of improving access to medications for People with MS. You can learn all about the Café by clicking below.
Neurology services in Ireland are critically under-resourced. A study conducted by the Neurological Alliance of Ireland (NAI) found that years of under-funding of neurology services had resulted in the lowest ratio of consultant neurologist per head of population in the developed world. In 2018, NAI along with their members, including MS Ireland launched the ‘Invest in Neurology’ campaign. This campaign highlights the major deficits that exist in neurological service provision in Ireland. Some of the key points are as follows;
- Ireland has less than half the number of MS specialist nurses.
- The Association of British Neurologists states that every country should have one consultant neurologists per 700,000 people. This ratio is exceeded within every hospital group in Ireland. In the mid-west there is one consultant for every 200,000.
- Waiting times for MRI scans are unacceptably long – no neurology centres have access to routine scans within two months of referral and in seven out of eleven centres there is no access to a scan within one year of referral.
- The National Clinical Programme for Neurology Model of Care was launched in September 2016. When will an implementation plan, with budgets and timescales be published by the HSE?
Get involved: For further information on this campaign and how to get involved, please visit: https://www.nai.ie/go/neurology_campaign/we_need_our_heads_examined
Neurorehabilitation is very important to people with MS to help them recover from relapses, slow down the progression of the condition and prevent unnecessary accumulation of disability. However, a recent survey by MS Ireland (My MS My Needs) found that less than a quarter of people with MS had ever been offered neurorehabilitation. In 2016, NAI along with their members, including MS Ireland launched the ‘We Need Our Heads Examined’ campaign to address this issue.
Get involved: For further information on this campaign and how to get involved, please visit: https://www.nai.ie/go/campaign_centre/we_need_our_heads_examined
There are various issues with community support services including:
- Lengthy waiting times to access physiotherapy, occupational therapy and speech & language therapy and insufficient access to these services with lack of follow up.
- Geographical inconsistencies regarding access to services.
- Long waiting lists for home care services, and when a service is provided it is often inadequate.
- Housing adaptations – grants are available but the means testing threshold is very low and the full cost of adaptations is usually not covered. Data from My MS My Needs, a recent study by MS Ireland, found that 18% of respondents would have benefitted from a housing adaptation but could not get it.
- People as young as 40 are availing of nursing home care due to lack of alternatives – there is a statutory entitlement to nursing home care but not home care and supports, and most of the state funding is channelled into nursing home care via the Fair Deal scheme whereas no such equivalent fund exists for community services.
Get involved: If you are experiencing an issue, get in touch with your MS Ireland Regional Community worker who can advise you on how you might approach the issue. They can advise or assist you to contact your local TD. You can find the names and contact details for your local TDs at www.whoismyTD.com