Louise Haughney tilts to the left when she's sitting in her wheelchair. Her GP has told the HSE that it is ill-fitting, causes her "chronic pain" and requires urgent alteration.
The 45-year-old has two third-level qualifications in social care and health promotion and, “ironically”, in advocacy studies.
Having lived in residential care in Sligo for 22 years, she thought she had achieved one of the most positive milestones of her life when she moved into her own home in 2015. But earlier this year her local Fianna Fáil TD Marc MacSharry told the Dáil that she has been "abandoned" by the State.
“I spend my life fighting for basic human rights,” she said.
According to the Carlow native, she has spent the best part of the last three years without access to a community physiotherapist even though she has cerebral palsy. After "fighting tooth and nail" she was recently seen by a physiotherapist and also had an appointment with an occupational therapist , the first one in over a year.
“I sit in a mould in my wheelchair – my body would be in a ball without it - and it doesn’t fit. I have been asking for it to be reviewed for over a year,” she explained.
The review happened earlier this month but she doesn’t know when the mould will be replaced or when she will see the therapist again. She was offered three physiotherapy appointments recently but because of illness, only one took place. “And the physiotherapist has moved jobs so I don’t know again when I’ll get another one.”
Her lowest point came during Storm Ophelia when she was told to stay in bed and after a morning and lunchtime visit , she was left without access to personal assistants for 18 hours, she believes because of a HSE directive.
“They did leave me food. My mother was on the phone every hour on the hour to see if I was alive. I wasn’t changed. I was lying in my own faeces and urine until the following morning.”
Recently her GP, in yet another letter to the HSE, said the lack of supports was putting a toll on her physical and mental health, and if appropriate services were not put in place, “this lady will end up back in care for the rest of her life”.
She says she also does not have a social worker assigned to her.
Independent living
She loves her home in Cranmore, Sligo, a bungalow which has been adapted and refurbished to a very high standard. But she says her current situation is not sustainable.
“My question is why does the HSE promote and encourage people to move from residential care into independent living if they have not the resources to deliver it. I am very independent and articulate, but I need personal assistants to be my arms and legs. I have to be transferred by hoist from bed to chair by a PA. I can’t shower. I cannot even make a cup of tea and if I wanted one now I’d have to wait until the PA who left at 11.30 comes back at 2.30.”
“They give me 35 hours a week but that’s not enough. The HSE attitude is that I must be washed and fed and changed and that’s it. I’m more than just a medical case.
“I haven’t been home to see my family for four years. The last time I had an overnight visit with my family was when my Dad died 13 years ago.”
MacSharry says there had been some slight progress in recent months but at a snail’s pace. “My own personal view is that budgets are dictating the pace of progress and not the person’s needs,” he added.
Asked to comment on Haughney’s case, the HSE said: “The HSE cannot comment on individual cases but we stress that we would always endeavour to ensure that we meet the needs of our clients where feasible.”
