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MS and The 2019 Budget

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Monday October 08 2018 11:13 AM

Before Budget 2019, Helen Farrell shares her opinion on the financial challenges of living with MS and how the Irish State can truly support people.

Our government ministers have an unenviable task in preparing our 2019 budget. Not only do they have to cover existing commitments but they also must plan for future contingencies and emergencies. Ireland has never been good at investing properly in the future and is bedevilled with transport, housing, education, social welfare and health systems that are full of historic quick-fixes and panicked responses to crises and outrages since the foundation of the State. Investing in proper preventative planning usually takes more resources and a longer-term view than ever seems achievable to our governments; to the despair of many. 

It’s understandable that buying the approval of voters and ensuring a positive next election is very important for political parties; few go into politics to be in opposition. Our elected representatives have a duty to balance the health, housing, education, welfare, transport and environmental needs of Irish citizens with the money they have available, and to enhance people’s lives, not necessarily their pockets. 

People with MS would love our politicians to sit up and notice that our neurological services are woefully underfunded and do not compare at all favourably with the rest of Europe, or indeed globally. MS is something that arrives in our lives uninvited and makes itself at home for life, often damaging our earning potential and costing us in so many ways across our lifespan. With access to good healthcare, medication, rehabilitation and support, life can continue for many of us in a productive way (albeit changed) but only if we receive the proper support. It is false economy to stint on these supports. The more support we have when living with MS, the more we can continue to remain engaged with life, earning and contributing financially and in voluntary ways and putting less of a financial burden on the State. It makes good financial sense to invest in MSer’s and conversely very poor judgement to limit services and supports. A severe MS-relapse or disease-course is far costlier for our healthcare, social welfare and other systems to deal with than the optimal situation of keeping a person with MS as healthy as they can be. 

At a personal level I am still angry at the election promise reneged on in 2013, to give all people who hold the Long-Term Illness Card an automatic GP Visit Card. It would have made life much easier for us all with MS. Keep us well and we’ll be more productive, for longer. 

MS Ireland’s pre-budget submission makes for sober reading (read here). The key asks of MS Ireland for Budget 2019 involve proper investment in neurology services, neurorehabilitation, community services and housing adaptation, as well as automatic entitlement to a GP Visit Card.  Although our Social Welfare services can provide good support for those of us who can’t work full-time or at all, more needs to be done to “make work pay”, although I personally dislike that phrase. There’s a whiff of the opinion that people who access Social Welfare are choosing not to work when they weigh up the financial “benefits” in favour of a life of State support.  Nothing could be further from the truth for most of us. We are trying to hang on with grim determination of any remnant of our former pre-MS working lives, reinventing ourselves, constantly adjusting and trying to outwit this disease. 

Another area that MS Ireland would like addressed is the amount of income disregarded when applying for Medical Cards. In people with MS on lower incomes, the disregard should be far higher, due to identified higher costs of living with MS. 

It is an exciting time in terms of new treatments emerging for MS. There have been quite a few new disease-modifying medications licensed in recent years that provide greater efficacy against MS, and the promise of more to come. New and innovative medications cost money and the government need to ring-fence spending to cover this for the future. 

All in all, a lot for our government to consider. But short-term planning benefit nobody and makes no prudential sense in the long-run. What we need now is our government to focus on playing the long game; just like MS does with us. 

 

Author: Helen Farrell

Comments

Emma

Monday October 08 2018 12:12

A great article about issues we don't generally talk about- MS and how it impacts the money in our pocket and the standard of services people with MS provided (or not!) by the State. Poverty and MS are a reality for many of us, budget decisions have a real-life impact.
Politics is personal- use your vote.

Joan

Monday October 08 2018 16:20

Did you ever consider going into politics Helen? A well written, accurate account of how things currently are for Irish citizens living with MS. Things could be so much improved. Use your vote!

Declan

Tuesday October 09 2018 18:04

Well said Helen. I agree with Joan

Robert

Tuesday October 09 2018 22:34

Helen, thank you for writing this post. You are shedding light on the reality of living with a chronic illness.
MS can slowly rob us of the ability to work and earn a living wage. Getting access to neurologists, physiotherapists, occupational therapists is difficult. It is even more unfair it depends on what part of the country you live in how much access you have. Living in peripheral Ireland with a peripheral, and often invisible, disease means we have a much higher economic, social and physical cost to pay.
Disability Allowance and GP Card should not be means tested but awarded as a means to slow down the progression of this disease.
As you mention, Helen, it is cheaper to prevent the problem, than to try and fix the problem.

Helen Farrell

Wednesday October 10 2018 19:11

Haha! Thanks Joan and Declan; people have asked me about going in to politics before locally but I wouldn't be interested in the egos involved. I don't care about getting credit for making change, it's the change for people that is important to me.

Helen Farrell

Wednesday October 10 2018 19:14

Thank you Robert. Living in the Dublin suburbs I hadn't even considered the geography of the situation when I was writing the piece. It is another angle that adds to an already difficult si for MS'er's.

Willeke

Thursday October 18 2018 19:33

Great post as always Helen. If only Dáil Éireann would be willing to listen.

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