AN ENNISTYMON wheelchair user, with Multiple Sclerosis (MS), has been forced to pay almost 60% of her weekly disability allowance on private care so she can go to bed at night.
Trish McNamara (52) requires assistance to get into bed, but was recently informed by the HSE that it doesn’t have anyone available to put her to bed for six out of seven nights in the near future.
This leaves the disability activist with two choices: sleep in her wheelchair, running the risk of sores on her skin, leading to ill health and hospitalisation or pay €102 out of her weekly €175 disability allowance for a private person to assist her, which she is currently forced to do.
While the HSE pledged to advertise to fill the required hours, the authority noted there is a huge lack of personal assistants and carers in the North Clare area.
“I have been asked do I have to continue working at the Cliffs of Moher. I want to contribute to society and I love working. My life would be so much easier if I stayed in the house and did nothing but it would have no value.
“If I don’t highlight this, there are lot of people out there who are voiceless. The system is wrong,” she said.
For five years, Trish received about 46 HSE personal assistance hours a week. However, she claimed this was cut to 26.25 hours due to a lack of resources about three years ago, leaving her owed 6,000 hours on paper if she was still receiving what she originally was deemed to require.
Trish noticed a big difference when she first starting using her motorised wheelchair.
“While I was using two crutches, people still looked me in the eye and spoke to me. As soon as I went into a wheelchair, they spoke to anyone that was around me. I didn’t exist. I was no longer seen. I found it hard. We have to change the mindset to a social model by including people with disabilities in what they need to lead a more independent life.”
When she is working at the information desk in the Cliffs of Moher, Trish often hears children asking their parents why she is in a wheelchair.
“The parent will either say ‘ssh, don’t be saying anything’, or ‘her legs don’t work’. If I have the opportunity, I will say ‘hi, how are you, do you want to see how the wheelchair works’. I will blow the horn, flash the lights and go around in a circle in a fun way.
“I want to get rid of this phobia that some people have about people in a wheelchair that you can’t say anything to them without it being seen as disrespectful or in some way discriminatory. Let’s get rid of these barriers.
“We need to start educating young people and others that there is a person in a wheelchair, even if they are non-verbal. Before people make a judgement on a person, they need to listen to them,” she explained.
Working as a customer service agent at the Cliffs of Moher Visitor Centre three days a week since May 2017, Trish loves every minute of her time providing information for visitors from all over the world and giving recommendations for food, drink, accommodation and tourist attractions.
She enjoys using the skills she developed over a 25-year career in the hospitality industry helping people with the busy North Clare tourist attraction.
As a full-time wheelchair user, she finds management and her colleagues at the Cliffs very supportive and helpful when the need arises. Management altered her work space to assist her to carry out her duties with ease.
“It is the one shining light in my life, as management and staff are incredibly supportive. I worked in hotels for 25 years and loved interaction with people. When I left hotels in 2010, I did some consultancy human relations work, but I missed people. I get a buzz out of work. It is the one thing I don’t have to fight for. “The rest of my life is difficult. I never wanted to have to highlight anything. Living a life of struggle and endurance is exhausting and demotivating, particularly when the return isn’t worth the effort”
Reared in Ard na Colla, Ennistymon, she has three brothers and one sister. Her mother, Rose is from Arklow and her father, Frank hails from Ennistymon. She doesn’t have family members who can support her as two of them who would like to help can’t due to spinal injuries.
The 52-year-old was finally diagnosed with Multiple Sclerosis on March 22, 2001 after the initial onset in January 2000 when she lost the sight in her left eye for six weeks due to optical neuritis.
Working as a conference and banqueting manager in a Wexford hotel at the time, Trish was told she had lesions on her brain that were consistent with MS as she was dealing with the arrival of a wedding party.
She praised Dr Michael Kelleher, Lahinch, who provided answers to the questions she couldn’t think of following the MS diagnosis as her head was spinning.
Dr Kelleher also advised her to be careful of misinformation on the internet.
In 2010, she had some chemotherapy treatment to suppress the immune system, which “preserved” her brain in comparison to her spine, which has meant her legs don’t work properly. She can stand when she pulls herself up with her arms to bear her own weight.
“My hands are starting to curl. My arm is a constant curl. I wear a strap to maintain it as much as I can. I can still drive but I will probably be only able to continue driving for another two years.
“I need help going to bed. I need help to get up in the morning to get showered and dressed. I need a lot of personal care. I can’t do food preparation,” she said.
Having spent six weeks rehabilitating in nursing homes in 2014 following shoulder surgery, she stressed they are not proper facilities for people with disabilities.
“Your freedom and liberty is gone. Your spirit is broken because you are in a place you don’t want to be.”
HSE Mid-West Community Healthcare said it couldn’t comment on individual cases.
It explained its range of assisted living services are accessed by evaluating individuals’ needs against a prioritisation criteria while resource allocation is determined by their needs and the level of available resources.
“There is not a limitless resource available for the provision of assisted living services and while the resources available are substantial, they are finite.
The majority of specialised disability provision (80%) is delivered through non-statutory sector service providers.
“Many disability service providers indicate they are challenged with staff recruitment and retention that impacts on service delivery. The HSE continues to work in conjunction with its partner organisations in exploring a range of options to enhance the recruitment and retention of essential staff across all aspects of the health services.
“Each year, the HSE provides 4.8 million hours of assisted living services to almost 10,000 people and is committed to protecting the level of Personal Assistant (PA) and Home Support Services available to persons with disabilities.”
East Clare correspondent, Dan Danaher is a journalism graduate of Rathmines and UL. He has won numerous awards for special investigations on health, justice, environment, and reports on news, agriculture, disability, mental health and community.