Thursday, 6 April 2017
Topical Issue Debate
Medical Aids and Appliances Provision
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.
I am taking this matter on behalf of the Minister for Health, Deputy Harris. I thank Deputy Butler for raising this issue. Under the Health Act 2004, the Health Service Executive is required to manage and deliver, or arrange to be delivered on its behalf, health and personal social services. The HSE has statutory responsibility for the provision of services for people with intellectual, physical and sensory disabilities or autism and their carers. These services include basic health services such as medical cards, prescribed drugs and medicines, medical and surgical aids and appliances, hospital services, dental services, optical services and aural services. The HSE funds a range of community services and supports to enable each individual with a disability to achieve his or her full potential and maximise independence. Services are provided in a variety of community and residential settings in partnership with service users, their families and carers and a range of statutory, non-statutory, voluntary and community groups. Voluntary agencies provide the majority of services in partnership with and on behalf of the HSE.
With the Deputy's permission, as she is already aware of much of the information provided, I will skip a couple of paragraphs.
In respect of the specific case identified by the Deputy, in subsequent correspondence today with officials in the Department of Health and following consultation with the HSE, I am informed of the following. It is the responsibility of the prescribing clinician to ensure that a comprehensive assessment relevant to each service user’s needs is completed prior to prescribing an item of equipment. The child concerned was clinically assessed by a HSE occupational therapist in Waterford Community Services and it was determined that a standard hoist would meet her needs. A standard hoist has been offered by the HSE to the child’s family. However, it is understood that they have indicated a preference for a ceiling track hoist. Ceiling hoist systems are not generally available through the HSE Waterford Aids and Appliances. The occupational therapist has advised the child’s family of its options and will continue to engage and support the family in relation to ensuring the child’s ongoing health needs are met.
I am further informed that the HSE is also available to discuss and support the family in relation to its equipment needs within the terms of the schemes available and I have asked the HSE to respond to the Deputy as a matter of urgency. I am happy to respond further to any questions from the Deputy.
I thank the Minister of State for the reply. The installation of a ceiling hoist would make such a difference to Emily and her family. It would mean that Emily would not be in so much pain and neither would her mum. Also, the house would be a safer environment for Emily and her family. At the end of the day, this child is in the care of the State but she is also in the care of her parents. If she had to be put into State care it would cost a fortune. Emily's parents are doing their utmost for her every day of the week. This is a funding issue. The ceiling hoist is not being refused on health and safety grounds.
The Minister of State mentioned in her reply that ceiling hoist systems are not generally available through HSE Waterford Aids and Appliances but they are available in other counties. I cannot understand that. Why this item, which would make Emily's life and that of her parents so much easier, cannot be given to her does not make sense in this day and age. It is a sad reflection of the society we are living in that a brain damaged child who cannot walk, talk, eat or speak and is incontinent is being refused a ceiling track hoist that would make her life a little easier. As I said earlier, I take no pleasure in having to raise this matter in the Dáil. It is wrong that I have to raise on the floor of the Dáil the provision of equipment for a child, which should be a fundamental right. All Emily's parents want is a normal happy life with their two children, one of whom is, unfortunately, brain damaged. It would make life so much easier on them to have a ceiling hoist installed. I have also raised this issue with the Minister of State, Deputy Finian McGrath. I am appealing to all involved to ensure that common sense prevails such that this child can have a ceiling track hoist installed in her home thereby making her life, which is tough enough as it is, that little bit easier.
I will bring the remarks made by the Deputy in her opening statement, particularly that the floor hoist offered would not fit into the child's room, to the attention of the Minister, Deputy Harris. I do not think the cost of a piece of equipment should inhibit any child having a proper standard of health service within his or her home. I do not think a cost of €2,700 is a huge amount. Unfortunately, I am not an occupational therapist and I must be guided by the reply for the HSE. According to the occupational therapist the hoist offered is adequate. However, I take on board the specifics of the case highlighted by the Deputy, particularly that the mother and the liaison nurse are not able to lift the child, and I will bring them to the attention of the Minister and I will ask him to deal with the matter as quickly as possible. I am taken aback by the Deputy's statement that in other areas this funding would be made available.