Omagh Parkinson’s Support Group one of a kind

THOUGH the world endlessly professes its appreciation for the work that unpaid carers perform, those words often ring hollow to those whom bad luck has led down this testing and often-lonely path.

Recently, Parkinson’s UK published a report that read as a damning indictment of the way unpaid carers are treated.

The document – which extensively surveyed Parkinson’s sufferers and their loved ones who look after them – concluded that family members that become primary carers frequently end up ‘mentally and physically tired’ and feeling like they are ‘fighting against the tide’.

One local carer told us he feels ‘unsupported and invisible’.

To find out more about the stresses and strains and confront unpaid carers, we spoke with the chairperson of Omagh’s only Parkinson’s-specific support group.

“I have been part of Omagh’s Parkinson’s Support Group since it was first established in the year 2000,” said John McFarland, whose partner was diagnosed with the condition almost 25 years ago.

“It was set up for sufferers, carers and family members to come together, get more information and share their experiences.”

The group routinely meets on the third Tuesday of every month. However, due to their summer recess, their next get-together will be in September.

“It’s all about offering people guidance, emotional support, alternatives therapies, and somebody to talk to.”

Joining the group can be a difficult and emotionally-fraught decision. As John put it, “to come along can be to get a glimpse of your future.”

He added, “It can be scary for people who are in the early stages to come and see how the disease progresses. However, for most people, it is something that is ultimately for the best. The worst thing you can do is bury your head in the sand.

“Although the thought of it is daunting at first, interactions with other families who really understand the position you are in can be some of the most valuable encounters you will ever have.”

When asked to reflect on gaps in support highlighted in the ‘Parkinson’s: Who Cares?’ report, John was not short of recommendations.

“If you are a carer in the community, you get training, you attend courses, you are taught how to be responsible for another person. But if you’re a carer in your own home, that same help is not available.

“This means they often end up feeling like a silent minority; voiceless and invisible.”

John also said that getting a consultant is difficult, which means most medical concerns that Parkinson’s patients have are directed to the local nurse specialist.

However, there is only one such professional that serves Fermanagh and Tyrone.

“She is excellent, but the demand outstrips the time that she has. Instead of one nurse specialist, we really need several. That would help both sufferers and carers alike.”

Frustrated

Another suggestion John had related to the remediation of something that most health service-users have grown frustrated by in recent years; access to GP services.

“It is the same for people with Parkinson’s as it is for anybody else; you call in the morning, you may or not get through, and based on that, a doctor might give you a call later that day.

“That is not good enough no matter what your health is like, but it is particularly unacceptable for people with Parkinson’s, which, partly because of the age at that is tends to strike, comes with so many associated symptoms and connected comorbidities.

“As well as all the symptoms that spring to mind, sufferers are often also prone to things like stomach and bowel problems.”

John also said that long NHS waiting lists also represent a agitating hurdle for sufferers and their carers.

“These days, most people who can afford be diagnosed privately usually do. Otherwise, if they were to wait in the NHS queue to see a neurologist for well over a year. But, of course, not everyone can afford that.

“Then there are the physiotherapist and occupational therapist waiting lists. Honestly, it is exhausting.”

Another source of stress John mentioned was the financial cost of caring. “The way a carer’s allowance is worked out needs to be revised. It is a ‘means tested’ entitlement, meaning that if you earn even a very modest wage you are not entitled. Even if your incomes does fall beneath the very low threshold, you only get about £70 per week.

“For many people, caring for a loved one is full time. In my view, £70 per week is borderline insulting.”

However, despite the many challenges that are part of the day-to-day life of an unpaid carer, John said there are means to make things easier.

“There are ways around things, people to speak with, services to be availed of. However, you need to know where to look. Please, anybody who reads this and thinks that our group could help, join us at Omagh Library on the third Tuesday of September.

“If you find out it is not for you, no harm done.

“But you might just discover exactly what you need.”