MND sufferer chains herself to HSE offices in Monaghan
A Crossdoney woman has chained herself to the railings outside HSE offices in Monaghan in a dispute over access to carers.
Marilyn O'Connor (57) was diagnosed with Motor Neurone Disease two years ago. Her condition has deteriorated rapidly in recent months.
"I need 24 hour care. I need everything done for me. I have no use of my hands, no use of my legs and, as you can hear, my speech is not very clear," Marilyn told the Celt from outside the St Davnet's Campus this morning.
She claims to have been allocated 108 hours of care from the HSE every week to help her continue to live at home. However, Marilyn says that, due to a staff member leaving an agency, she has been left without a carer three nights a week.
Marilyn says that such absences have forced her to pay for private carers and she claims to have spent €7,500 of her own savings for her funeral to foot the bill.
Her dispute centres on reimbursement for private care when HSE carers fail to show due to leave or sickness. She's accusing HSE management of "bureaucracy and incompetence" in dealing with her care plan.
Marilyn says that every day she is living with the "stress" of the situation and can't operate on a "day to day basis" - that she needs certainty and security.
Speaking to the Celt, Marilyn said, so far, nobody from the HSE offices had come out to speak with her this morning.
"But as you can hear, I have lots of support," she added, the sounds of car horns tooting audible in the background.
A number of friends have joined Marilyn in her protest.
"I have wonderful friends and family," she added, thanking them for their support.
Some of those friends have launched a GoFundMe page for Marilyn and are planning a benefit night in the Lavey Inn on February 26 in an effort to replace some of the money Marilyn has spent on private care.
"I am never going into a nursing home," said Marilyn who's determined to remain at home in Crossdoney.
So far, they have raised close to €300 of a €10,000 goal.
Over the past 30 years, Marilyn has helped to raise in excess of €100,000 for various charities including for the Irish Motor Neurone Disease Association.
MND is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting. Around one person in 30,000 develops MND each year. In Ireland, this amounts to around 150 new diagnoses every year.
Contacted by the Celt in relation to Marilyn's case, the HSE said it does not comment on individual cases in consideration of its duty of confidentiality.
"The HSE regrets any experiences by service users that they deem not to be meeting their expectations. The HSE will respond to any issues identified to it and work with individuals impacted to agree a resolution," said a spokesperson.