‘We shouldn’t have to fight for basic care’...MS sufferer says Neurological patients are being 'failed' by the HSE

An MS sufferer says Neurological patients are being "failed" by the HSE due to the current shortfall in community neurorehabilitation teams in Ireland.

Sorcha Boyle (right), originally from Drumconrath and now living in Ardee was diagnosed with Multiple Sclerosis in 2014 and was one of the speakers at the NAI (Neurological Alliance of Ireland) launch of its "patients deserve better" campaign, an urgent appeal for a community rehabilitation team to be established for the CHO 8 area that includes Meath, Westmeath, Louth, Offaly, Longford and Laois.

There are only two community neurorehabilitation teams in Ireland, despite nine teams being required which is outlined in the Implementation Framework (2019-2021) for the National Neurorehabilitation Strategy.

The Neurological Alliance of Ireland (NAI) seeking commitments from elected representatives and the HSE to tackle the lack of a community neurorehabilitation

“I was diagnosed with Multiple Sclerosis in 2014, and the following year things really went haywire and I had a severe relapse and spent four-and-a-half months in Beaumont Hospital, after which I was transferred to the National Rehabilitation Hospital (NRH)" said Sorcha.

"I couldn’t walk, I was in a wheelchair it was horrendous.

"I got good input from physios, from speech and language, from OT but the only reason that I got access to those services is because I had an absolute health crisis. My MS had got so bad that when they did an MRI in Drogheda in September 2015 it looked like I had a brain tumour so I got sent to Beaumont for brain biopsies where they said 'no, it’s only MS but it is a very bad relapse that you have had'.

"I got to have specialist neurophysio in Beaumont and got referred to the National Rehabilitation Hospital (NRH) and I spent eight weeks as an inpatient there. They got me back walking. I am lucky that I got in there because it’s very difficult to get admitted."

"There are physios in the community but not dedicated neurological physio specialists. My needs would be very different to an elderly person or a person who had a hip replacement and needed physio in the community. CH08 is enormous, the population is huge and there is not even any funding in place for it which is kind of disgraceful.

"The last time I saw an OT was in 2016 seven years ago and the only reason I saw an OT was because I was in the NRH. My nearest primary care is Ardee, the physio there does general physio and not neurological. I travel a lot to the UK for stem cell treatment to treat my MS and I had very good results from that, I don’t have to wear a brace on my leg anymore but that has its own challenges because I need to learn how to walk again without a brace and without a walking stick.

"What I would have needed was physio intervention when I got back from London but it never happened and that was over a year ago. I still have to use a stick when I’m out and about. I always say that I’m one of the lucky ones that got as bad as I did to access anything at all and it should never come to that.

"We shouldn't have to fight for basic care."

The mum-of-one has no history of MS in her family so the diagnosis was unexpected as she explains:

"About a year before I finally got my diagnosis I started to have neurological symptoms like pins and needles in my feet, my right foot was dragging when I was walking and I was having extreme fatigue all of the time. At the time I was doing my internship year in college as a student midwife. I put my feet being numb down to being on my feet all day, I dismissed it that it was nothing and I think the thing that made me eventually go to the doctor was that I realised just by sheer accident that I couldn’t see certain colours out of my eye properly.

"I went to doctor Google at that stage and I read a bit up on neuritis and when I read about it I thought that might be what’s wrong with me. The more I read it said it could be an early symptom of MS. When I read about MS, all of the lights were going off."

Sorcha was eventually referred to a neurologist in Dublin who diagnosed her with MS. She says having no rehabilitation teams in the community has a huge impact on her life, she added:

"If something happened to me my nearest hospital is Drogheda and that doesn’t have a neurology unit so I try and avoid hospitals now as I don’t want to go near them.

"In Drogheda, they have a visiting neurologist one day a week, she comes on a Monday so if it’s a thing that you go in on a Thursday, they will make you stay there until the Monday blocking a bed, the whole system is broken."

Sorcha is passionate about patient advocacy and one of the patient contributors to The Royal College of Surgeons research on MS.

"It’s the only peace I get from being told you have MS forever because otherwise you would roll over and let it take over your life. I always say I’m a lot of things but MS is not who I am. It’s a very small aspect and I was a fully formed adult before MS came into my life."