A young Donegal woman with chronic illness is packing her bags for UCD after a hard-fought battle for care to live and study in Dublin.
Sorcha McElchar from Castlefin has shared her delight at securing an overnight carer to allow her to make her first move away from home.
The 25-year-old is about to begin a Masters degree in Public Health at UCD this September. She had the university place, she had the accommodation, but for months, she was unable to go without the promise of an overnight carer.
Sorcha lives with a complicated autoimmune disease which can cause a range of serious health issues. She has Type 1 diabetes, thyroid problems, Addison’s disease, all compounded by a serious intestinal malabsorption issue. For many reasons, she requires constant medical support and cannot be on her own for long periods of time.
Having lived at home with her parents until now, Sorcha met a major roadblock when she was unable to find a HSE department to support independent living for adults with chronic illness.
“At the time I didn’t realise how difficult it was going to be. Because my illness isn’t really classed as a disability, it’s classed as a chronic illness, there was nowhere for people like me to apply to. I soon realised there was no assessments” Sorcha said.
After being turned away from several departments, Sorcha eventually met with a team who assessed her for her needs. In mid-July, she finally got an all-important sit-down meeting to make her request.
“It was a very emotional meeting for me I was so tired of fighting for nearly a year and a half,” Sorcha said. She was given two weeks to form her own care plan and find a team of nurses. After a fraught fortnight of calls and research, she returned to the HSE officials to make her case.
She said: “I went in with my battleplan. I had a folder with an answer to every eventuality I could have thought of, which is extremely difficult because I don’t like thinking of the worst case scenario. Once they started crunching numbers, I thought, ‘oh my God, I’ve done it.’”
“We are still looking for nurses if anybody is looking for a part-time job in Dublin.”
Sorcha says her battle is not unique.
“I hate people saying ‘don’t let your disability get in the way of doing things’, because it does, and you have to find a different way. This was a roadblock I couldn’t get around, I couldn’t go to UCD without overnight care.”
Sorcha has been fortunate to have SNAs throughout primary and secondary school. During her undergraduate studies at LYIT she had a full-time PA. The same support has been offered to her by UCD. It will be the time outside of the lecture halls that she needs independent support.
The ambitious young woman, who writes a nutrition column for Donegal Daily, is now looking forward to furthering her knowledge of nutrition-related health. Her own experience with illness gave her a special interest in nutrition and dietetics and she gained a Food Science and Nutrition degree at LYIT in 2020.
“I want to work with people who want advice to eat better. There are so many people who can’t get on a list to see a dietician and they are confused about all the information that is out there,” Sorcha said.
While she has a sense of relief to win the freedom to go to Dublin, Sorcha says she knows that more hurdles are ahead.
“My message to others is “Don’t give up”. If you give up it’s not going to be easy. Ask questions, ask why does a service not exist.
“The HSE as a body needs to look at their systems for people to live independently. If I didn’t have such a supportive family, and if something was to happen to my parents, I would be put into a care home, when really what young people need is a care team to come in a couple of times a day, maybe overnight and they can live independently.”
For practical and evidence-based nutritional advice, follow Sorcha’s Healthy Living column on Donegal Daily here: https://www.donegaldaily.com/category/columnists/healthy-living/