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A DAY IN THE LIFE - Fiona O’Neill, Family Carer

Siobhan Donohoe speaks to Fiona O'Neill

Siobhan Donohoe

Reporter:

Siobhan Donohoe

Email:

siobhan.donohoe@iconicnews.ie

A DAY IN THE LIFE - Fiona O’Neill, Family Carer

Fiona O'Neill

Fiona O’Neill is born and reared Kilkenny, with her roots in the heart of the city in Maudlin Street.
Mother to Niall (14) and Aydin (10), Fiona and her sons now live in Mullinahone but she reminds me that she will always have black and amber in her blood.
She is a charity volunteer, advocate for juvenile arthritis, social entrepreneur and network marketer. When she doesn’t have a business hat on, she takes time to pick up a paint brush and transform a canvas.
Alongside her entrepreneurial and charity work, Fiona works part time in Specsavers in Kilkenny’s Market Cross Shopping Centre. It was through starting her part time work in Specsavers, as a family carer that her social enterprise, Jobs for Family Carers, was born.
Her son, Aydin, is actively involved in sport through Kilkenny’s Evergreen Football Club and Niall is her right hand man when it comes to supporting the Kilkenny Branch of Arthritis Ireland. Niall lives with the chronic disease of juvenile rheumatoid arthritis every day.
Parenting alone, starting an enterprise, advocating through charity, managing her son’s medical condition and being a soccer mom has taught Fiona that life is what you make it. Her mantra of “I am responsible” reminds her to take responsibility for herself and her family, her reactions and her situation.
Here is a glimpse into Fiona’s world…
What does it entail being your son’s carer?
Anyone who lives with any type of disease and chronic pain knows the everyday tasks of managing the condition. Every day Niall takes tablets. Weekly he is given an injection, monthly he has blood tests done to ensure the medication he takes to manage his disease doesn’t impact his liver. Along with the tangible aspects of medication comes the physical and emotional management of his disease.
As a result of Covid-19, Niall’s physiotherapy, occupational therapy and psychology sessions abruptly stopped. Right now we are trying to manage his physiotherapy at home. We’ve invested in a stationary bike to help keep his joints moving and a “wobble board” to work on Niall’s muscle strength.
Children living with rheumatoid arthritis in Ireland have drastically poor services with very little, if non local services when living outside Dublin. For example Niall’s consultant is based in Crumlin, his physiotherapist in Clonmel, his occupational therapist is based in Cashel, and his Ophthalmologist based in Waterford. As his carer that means a lot of miles on the road and a lot of hours beside a hospital bed throughout the year for surgery and to visit his multidisciplinary team.
Tell us about Niall’s journey with juvenile arthritis.
Niall was diagnosed with juvenile arthritis in 2009. His first symptom was a limp for which we brought him to hospital.
No obvious reason could be given for this limp. Being three years old at the time, he had just gotten his first scooter, so we assumed the limp was as a result of using one leg too often on the scooter. If only that were the case!
Six months later Niall was admitted to St Luke’s Hospital with swellings to the back of his knee. It was during his admission that one particular leg ballooned up with a very visible size difference to the other leg. The team in Kilkenny had conversations with the Rheumatology Team in Crumlin. It was through Crumlin’s recommendation of specific tests, that an official diagnosis was given.
Over the years, in addition to arthritis impacting his joints and muscles, inflammation has impacted his sight. Niall has lost sight in his left eye. Inflammation in the eyes is known as uveitis. At 12 years old, Niall had his first cataract removed, and then onto an artificial lens implant with multiple steroid injections into the eye to reduce the inflammatory activity.
Now, at 14 years old, he is the bravest young man I know. The pain, treatment and challenges he has had in life would stump some of the strongest adults.
You also help run the Kilkenny Arthritis Branch. What services do you provide?
The Kilkenny Branch was set up to help people across the county, of all ages, who are living with arthritis and fibromyalgia. When someone is living with daily pain and managing a disease, it is sometimes only another person living that same experience that can understand them.
Our Kilkenny Branch is a place to meet others living with any form of arthritis, ask questions, share tips and just have fun and get out of the house.
The branch offers a number of different supports. We encourage our members to get involved in physical activity events. A vital key to managing arthritis is movement, no matter how small. Movement is a medicine.
Right now, as a result of Covid-19 and having to stay socially distant, our group meets in the Kilkenny Castle Park on Friday afternoons for a stroll. This is not a high intensity walk, but a walk to ease us all back into movement after having to cocoon.
Our branch is an advocate for people in Kilkenny living with arthritis and fibromyalgia. While queues the new norm when entering a shop or business not everyone living with joint problems use wheelchairs or walking sticks. Our members have spoken to us about having to leave queues because pain levels start to rise while standing or choosing not to come to Kilkenny at all so as to avoid queues completely.
We have started a campaign among the businesses of Kilkenny to allow people living with arthritis and fibromyalgia to have quicker access to their business, when they present their Kilkenny Branch business card.
What does the future look like for Niall, considering there is no rheumatology department in Kilkenny?
As Niall transitions from pediatric rheumatology service to adult services his consultant will more than likely be Cork or Waterford. The rheumatologist in St Luke’s Hospital retired in October 2018, meaning people have to travel to St Vincent’s in Dublin. The vacant rheumatology position in St Luke’s still hasn’t been filled.
Through the Kilkenny Branch we are demanding that the HSE can’t be allowed to become comfortable with patients having to travel long distances for treatment. It’s about not letting complacency sink in.
Anyone living with joint and muscle pain will know the torture of sitting on a bus or on a train for two hours without having room to stretch out when joints seize up or burn.
Niall’s treatment will continue for life. An auto immune disease cannot be cured as some people may think. It is a lifelong condition that needs to be managed. When the correct management plan of medication and exercise is found, the disease can be forced into remission, but then the management plan progresses to it’s next phase of keeping the disease in remission.
What is the social enterprise about that you set up for the family carer?
The social problem that I’m addressing is the fact that family carers are grossly under represented within the Irish workforce. A family carer is an individual who cares for a loved one from their family because of an illness, disability or the inability to do some everyday tasks on their own.
Some 80,000 out of the 390,000 family carers in this country are in receipt of a social protection payment known as Carers Allowance. The conditions of this allowance means you are permitted to work outside of the home for up to 18.5 hours a week. I believe many employers are unaware of the demand for contracts of this size.
Ireland’s health and social care system depends on family carers. Despite their valuable contribution to our society the health of family carers has decreased in the last 10 years resulting in 48% of family carers reporting poor mental health. Employment has been proven to increase self-esteem and reduce psychological distress.
I want to reach out to employers to advocate that they consider contracts of 18.5 hours to allow family carers to secure employment.
I am proud to say that I am a family carer. I am in receipt of Carers Allowance because my son lives with rheumatoid arthritis and sight loss. I am parenting alone and needed to find employment to ensure a good quality of life for myself and my two children. The level of care he requires means that even if I wanted to, I cannot work full time.
I decided I wanted to help people in a similar situation to myself and hence the social enterprise, Jobs for Family Carers was born.
For more information see www.facebook.com/
jobsforfamilycarers