ACT NOW! LOBBY YOUR LOCAL TD

Make your voice heard by asking your local TD to raise the issues facing over 9,000 people with multiple sclerosis (MS) in Ireland. We are lobbying for improved access to services, treatments and benefits and entitlements - all of which have suffered severe budget cuts in recent years, significantly impacting people living with MS.

There are a number of ways you can interact with your TDs – many TDs will have local clinics where you can go in and meet them in person and this is usually the best way to bring up issues of concern to you. TDs are more likely to take action on an issue if a number of their constituents bring it up with them directly. 

As well as going to a TD’s clinic, you can also email or write to your TDs. You can find the names and contact details for your local TDs at www.whoismyTD.com  Simply put your address into the search bar and all the details for your local political representatives will come up.

You can find some key data and points for you to raise with your TDs in MS Ireland’s current Advocacy Strategy. You can read the Advocacy Strategy here

Below are a few suggested points that you might want to bring up. These can either be copied and pasted into an email or letter, or you can bring them up in person at the TD’s clinic. Don’t forget to share your own personal experiences of trying to access services and any difficulties you have encountered too – although data and numbers are important, it is your personal experiences that your TD will be most interested in. 

Neurology services

  • Ireland has less than half the number of MS specialist nurses and neurologists that we should have
  • 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 11 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?

Access to medications

  • Sativex, a cannabis-based medication to treat limb spasticity in MS, was given a license in Ireland in 2014 but is still not available. Can the HSE be asked to reconsider their decision not to reimburse Sativex?
  • 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?

Neurorehabilitation

  • Neurorehabilitation is very important to people with MS to help them recover from relapses, slow down the progression of the disease 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. The Government and the HSE must commit to investing in neurorehabilitation services and implementing the National Neurorehabilitation Strategy (published in 2011) as a matter of urgency

Community services

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 channeled into nursing home care via the Fair Deal scheme whereas no such equivalent fund exists for community services

You may also want to draw your TD’s attention to the following key reports from MS Ireland which contain detailed data and policy recommendations:

Time to Act: A Consensus on Early Treatment: This report contains detailed recommendations for policy makers regarding the need to improve Ireland’s neurology services.

Quality Of Life of People Living with MS in Ireland: This report contains data and recommendations regarding what can be done to improve quality of life for people with MS, specifically relating to neurology services and employment.

Multiple Sclerosis and Employment: Facts and Figures: This report contains detailed policy recommendations regarding supporting people with MS to stay in the workforce and data that shows Ireland is performing poorly on employment for people with MS, compared to the EU average.

Societal Costs of Multiple Sclerosis in Ireland 2015: An in-depth report on the costs of MS to the Irish taxpayer, and what can be done to reduce those costs.

Hard copies of these reports are available from MS Ireland’s National Office – please call (01) 678 1612 

Let us know how you get on!

We are always interested to hear about any responses or feedback that people get from their TDs – please contact Harriet, Information, Advocacy and Research Officer on (01) 678 1612 or by email to harrietd@ms-society.ie if you have something you would like to report back. 

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