Mary Butler (Waterford, Fianna Fail) | Oireachtas source

I thank the Minister of State, Deputy Catherine Byrne, for coming to the House to deal with this matter, which I am disappointed to have to raise on the floor of the Dáil but I have exhausted every other avenue open to me.

This issue relates to a child called Emily who will be six years old in June. Emily was brain damaged at birth. She cannot walk, talk, eat or do anything for herself. She is also incontinent. Emily's hearing is exceptionally good but her sight is not. She attends school in Dungarvan and she is looked after very well in St. John's on a weekly basis. Emily lives at home with her mum, her dad and her three year old brother. She has to be lifted multiple times a day and, if sick, she has to be lifted a great deal more. She has a standing appliance, a walker, a comfort chair and a wheelchair but she needs to be lifted and carried from these appliances several times a day. She also requires physiotherapy every day as her hands are permanently fisted and her hips are very tight and rigid. Emily has no freedom of movement and her muscles spasm regularly so physiotherapy is vital to her in her life. Ideally this should be done on a flat surface and so Emily's mum normally does it on the floor. However, her mum is no longer able to lift Emily from the floor as she now has severe back pain.

Emily's needs are a constant physical strain on her family. As I said, her physiotherapy is now carried out while she is on a bed, which unfortunately is not as beneficial or effective but the family has no choice. Emily's mum has been fighting for a ceiling hoist for Emily since last summer. A floor hoist was offered by the HSE but it will not work for the family because it will not fit into Emily's room. Emily's mum advised the HSE that the floor hoist would not work. She understands that the ceiling hoist is more expensive - it is approximately double the €1,300 cost of the floor hoist, at €2,700 - and she is willing to meet some of the cost. We have hit a brick wall. Regardless of where we turn the answer continues to be that the floor hoist is the only appliance that can be provided for Emily. To add to this, the liaison nurse who attends the family and Emily has been advised by her employers, the HSE, not to lift Emily and so she is no longer attending her. This is extremely upsetting for Emily and her family.

As I said, I take no pleasure in raising this matter on the floor of the House. I acknowledge that there is a lot of good work being done but we are continually meeting a brick wall on this matter. This ceiling hoist, that would run from the bedroom to the bathroom, would enable Emily to be easily moved to and from all of her appliances. This would make life so much easier for her family. Approximately €14 billion is spent annually on the health budget. The amount required for this ceiling hoist is not huge. I accept the HSE is under constraint in terms of its budget. The HSE has not refused this hoist on health and safety grounds. I was actually told by a HSE employee to apply to Waterford City and County Council for a grant for the hoist. In my view, it is passing responsibility for this matter to Waterford City and County Council and it is not its responsibility.

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