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Opinion: It's hard enough living with MS without having to push for support

A new EU index shows Ireland lagging in its care of patients with MS, writes Lauren McCauley.

Lauren McCauley

I WAS ONLY 18 when the identity-shattering bombshell, otherwise known as ‘an MS diagnosis’ came barging into my life.

Receiving a diagnosis of a serious health condition is difficult for anyone to wrap their head around, but in my case, I was diagnosed with this incurable condition as a teenager.

During this time, I had to come to terms with what this meant for me and the rest of my life, whilst also dealing with the painfully standard problems everyone experiences during the transition from teenager to 20-something.

Needless to say, it has been a steep learning curve. 

Ireland must do better

Recently, I was invited to share my thoughts on the Irish results of an index of countries and how they fare in the treatment of MS sufferers – the FutureProofing Healthcare MS Index - covering 30 European countries.

The Index was led by an independent panel of experts from across Europe, in partnership with Roche.

According to the MS Index, Ireland ranks 22nd out of the 30 countries assessed and ranks rather poorly in most of the measures examined in this index.

While this result is disappointing, it is unfortunately not surprising based on my own experience.

My own story

When I was first diagnosed I thought that the hardest part of receiving this diagnosis would be dealing with the symptoms of the condition itself and assumed everything else would fall into place.

During the first year after my diagnosis, my life was a muddy melting pot of uncertainty, anxiety, low self-esteem and loneliness. That year my life jumped from one extreme to the next.

Being diagnosed with MS, dropping out of college, starting treatment, learning to drive, starting college (again), learning to manage my chronic pain, and making new friends.

At that time, I felt alone in my experience, as my MS diagnosis made it difficult for me to relate to other people my age. My mind was reeling with questions and worries, which had no easy or definite answers.

Now, four years later, some of the main symptoms I live with day-to-day include chronic nerve pain, numbness and fatigue; but there are also many more.

Grateful for where I am

The symptoms of MS vary greatly from person to person, but I’m lucky that so far, this condition has not affected my mobility. As well as this, I’m also grateful to be on a disease-modifying therapy which has been working for me for several years now.

However, that being said, the fact that my MS is invisible to others presents its own unique set of challenges.

While looking ‘healthy’ or ‘normal’ may be seen as an advantage, it can also create misunderstanding around the difficulties that invisible disability can cause in daily life.

MS aside, thanks to the help of my amazing family, friends and lecturers, I did finally finish my degree and even managed to graduate from DCU with first class honours in November 2019.

Now, I’m currently studying as a PhD student in the School of Nursing, Psychotherapy, and Community Health in DCU. Additionally, I’ve also been heavily involved in fundraising for MS Ireland since my diagnosis.

Some of the fundraising ventures I’ve taken part in include the mini-marathon, the MS Ireland Slovenia Trek and the MS Ireland Croke Park Abseil. I also hope to complete a skydive for MS Ireland in February of this year.

An uphill battle for support

I did not anticipate having to constantly self-advocate to secure the support I would need to maintain my quality of life and achieve the life goals I wanted for myself.

Having MS in Ireland today involves not only becoming an expert on the condition but also the arduous processes you must undertake to receive support in areas such as healthcare, employment, social welfare and disability aids.

Getting the necessary help can often seem like a losing battle, not to mention that the symptoms of MS itself can make managing these systems difficult.

Strict barriers to entry, eligibility criteria and other gatekeepers to support can often leave people with MS feeling frustrated, disheartened and overlooked. 

Daily living matters

For this reason, I was impressed that the Index included a section measuring ‘daily living’ factors impacting people with MS.

This well-rounded approach to health and wellbeing acknowledges that living well with MS is about far more than just medical care and treatment alone.

It is great to see factors such as disability benefits, sick pay, working arrangements, housing, youth support and transportation highlighted in the Index as being vital to the overall wellbeing of people with MS. 

Certain aspects of the Index stood out for me as a young person with MS. 

MS is one of the most common neurological conditions amongst young people, with most people being diagnosed in their 20s and 30s.

Given this, I was impressed that the Index included a youth support measure, for which Ireland came in tenth place.

Employment support and working arrangements was another area covered by the Index which could be considered particularly relevant to younger people living with MS who want to start or maintain their career whilst managing their illness.

Although Ireland ranked well in the area of sick pay (sixth place) and fairly for disability benefits (12th place), overall the country came in a disappointing 17th place for flexible working arrangements.

It is also worth noting that even a very small income excludes people with MS from being able to avail of a Medical or GP visit card, thus reducing the benefits of or incentive to try to work whilst managing an illness.

The addition of MS to the list of illnesses included in the HSE’s Long-Term Illness Scheme was welcome support to those with this condition.

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Health service woes

Long waiting times for public neurology services, coupled with poor public MRI access, is a dangerous combination which delays MS diagnosis and treatment, and ultimately can result in avoidable disease progression.

The Index reported the worryingly low statistic that Ireland only has two neurologists for every 100,000 people.

Rehabilitation services and mental health services also scored poorly in Index. In my opinion, good mental health services are particularly important for people with MS, because in addition to the obvious mental anguish that comes with an incurable and debilitating illness, MS also directly impacts the brain itself, damaging the very centre which controls our emotions, thoughts and cognition.  

Today people living with MS in Ireland must rely heavily on the support of organisations such as MS Ireland, without which many people with MS would be left floundering, without the ability or funds to access vital services and information. 

For those who live with MS, the daily grind of managing the debilitating symptoms can be difficult enough without the additional stress of having to fight tooth and nail to access basic supports.

I hope that the Health Service Executive and Social Welfare Systems will acknowledge and take on board the results of the Index and use them guide future funding, policies and strategies which are aimed at improving the lives of people living with MS in Ireland.

Lauren McCauley is a PhD student at Dublin City University, Twitter: @laurenamccauley  

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