Susan O'Keeffe (Labour)
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I thank the Minister for coming before the House. This matter relates to St. John's Hospital, Sligo, which has a fine tradition of providing care, particularly for those who are highly dependent. I was a patient at the hospital which is an old facility. When officials from the Health Information and Quality Authority visited it recently, the Cairde Ward had to be closed. It had 35 to 36 beds for women, many of them high dependence patients. Some of the women were moved out of the hospital and some were moved to other beds on an emergency, ad hoc basis on the understanding that the ward would be refurbished and reopened by Christmas with 19 beds, although my figures might be slightly awry in that regard. My concern now is that the ward remains padlocked. A tender does not appear to have been offered to anybody to do this refurbishment work and therefore it appears that not only will there be the loss of 19 beds in the refurbishment but potentially the loss of the 35 beds. The families and the staff are concerned. I understand also that some of the nurses who were on contracts have not had their contracts renewed in recent weeks and therefore if the ward was to be refurbished and reopened, there now appears to be a shortage of staff. There is considerable confusion and hence my request for some clarity from the Minister today.

Alan Shatter (Dublin South, Fine Gael)
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I thank Senator O'Keeffe for raising this important issue. It provides me with an opportunity to update the House on this matter on behalf of the Minister of State, Deputy Kathleen Lynch, who is indisposed, and outline the background to the current situation and the action taken by the Health Service Executive. As the Senator is aware, Government policy on older people is to support people to live in dignity and independence in their own homes and communities for as long as possible. Where that is not feasible, the health service supports access to quality long-term residential care where it is appropriate, and we continue to develop and improve health services in all regions of the country and ensure quality and patient safety.

The Health Service Executive has sole operational responsibility for the delivery of health and social services, including those at facilities such as St. John's Community Hospital, Sligo. St John's Hospital is a single-storey building which was first established in 1971. There are 165 beds at the hospital providing long-term residential care, rehabilitation, convalescence, respite and palliative care. Other facilities include an active day hospital with physiotherapy and occupational therapy, and speech and language services are provided also. In April 2011, the Health Information and Quality Authority, HIQA, noted that "the physical environment did not comply with the regulations and standards". HIQA further noted that "the residents' personal and communal space was not designed and laid out in a manner to ensure their safety, encourage and aid their independence and assure their comfort and privacy". In this context, the HSE had to review the maximum number of residents that could be accommodated to ensure the accommodation would suitably meet the individual needs of residents. In addition, the HSE needs to address fire safety issues at the hospital. On foot of the HIQA report the HSE temporarily closed Cairde Ward on 9 October 2011. A total of 24 residents were moved to other wards and staff were redeployed within the hospital. In an effort to address the fire safety issues and the challenges with the physical environment at St. John's, the HSE is considering its options regarding reconfiguration of Cairde Ward.

Residents and relatives have been and will continue to be fully consulted throughout that process. I am sure everyone in the House will agree that the safety and well-being of older people is of critical concern. Quality care and patient safety comes first, and all patients should receive the same high standard of quality-assured care.

From a national perspective, I advise the Senator that the Department of Health is reviewing the provision of public residential care in the light of the need to meet national standards and regulations, local demographic pressures and public and private provision. The review will serve as a platform for discussion and will inform the development of an overall strategy on how the HSE should continue to provide this service in future in view of current budgetary and other pressures. The review must also be seen in the light of the wider health reform programme to which the Government is committed, and the position of social care services in a future health service. It is a matter for the HSE to deliver services nationally and locally within its budget and overall health policy priorities in line with the overall resources available to it. The Executive will continue to work closely with the Department of Health in that context.

Susan O'Keeffe (Labour)
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The staff, the patients and the families view the standards as being vitally important, and people welcomed the HIQA intervention at that point. I am still unclear, however, because "considering its options" might also mean that Cairde Ward could remain shut. I am no clearer as to whether the refurbishment will start or whether the commitment has been made.

Alan Shatter (Dublin South, Fine Gael)
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The Senator will appreciate that I am substituting for the Minister of State, Deputy Lynch, who would have liked to have been present. The information I have is that the overall assessment is taking place. I do not want to say anything about the matter that could be misleading. I will draw to the attention of the Minister of State the Senator's concern about the matter to determine if greater clarity can be provided in the context not only of what is specifically being considered with regard to the various options available but also with regard to the timeframe.

Mary Ann O'Brien (Independent)
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I am here to express the need for the Minister for Health to give an assurance that adequate home care of a minimum of eight and a half hours per week will be provided for Mr. JJ Ryan thus continuing the level of care he receives from the Jack and Jill Children's Foundation and allowing that charity to step back from this case, which should have happened when JJ turned four years old on 12 September 2011. I also ask the Minister to explain the reason there are regional discrepancies in the provision of care by the Health Service Executive for children in similar cases and the reason the Irish State still does not have a budget for paediatric home nursing care.

The key consideration that goes to the heart of this problem for the family is that the Jack and Jill care team were reminded by Mr. Pat Healy, the HSE's regional director of operations, on 21 November of this year that regarding the HSE providing a home care package, it should be noted that while the package of care for the elderly is to keep people in their own home and out of hospital and nursing homes, with children the emphasis is on ensuring that the children are provided with all the therapeutic and intervention services required while supporting the family.

I urge the Minister to help the HSE to rethink home care for children, the way it is funded and the delicate balance between keeping the child comfortable at home, particularly when the child, like JJ, is prone to infection, and giving the child access to all the therapies they require. Children like JJ need and are entitled to both.

Mr. Healy from the HSE also reminded all concerned in JJ's case that none of the disability services within the HSE are demand-led, something I find difficult to believe. It is imperative in this economic climate that all services operate within their allocation. That goes to the crux of the problem, namely, the budget allocation for paediatric home nursing care and when that will be delivered in line with the programme for Government.

JJ Ryan is from Tipperary town and was born prematurely in 2007 with a hole in his heart and chronic lung problems. A brain bleed at birth meant he also suffers from quadriplegic cerebral palsy, deafness and epilepsy, and J.J. is unable to speak.

Paddy Burke (Fine Gael)
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I ask the Senator to refrain from mentioning names.

Mary Ann O'Brien (Independent)
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The little boy is unable to speak. His sister is healthy and well, and he also has another little sister. There are children aged three, four and under in the home. The Jack and Jill Children's Foundation supports children from birth to four years of age. The Jack and Jill Children's Foundation is struggling to meet its commitment to the children we mind, but we cannot simply drop this child whose father also suffers from epilepsy. The Dad is a porter in a hospital in Limerick. He has to get the bus to work every day because he cannot drive due to his epilepsy. He is getting an average of four hours sleep per night because this child must be tube fed.

We have to find a way to help this child. The family is looking for eight and a half hours per week, which will cost the State approximately €300. The correspondence to date was on 23 June of this year when the Jack and Jill foundation liaison nurse wrote to a senior HSE disability public health nurse with direct responsibility for JJ, and the assistant national community care director, outlining JJ's immediate need for home support care once he reached his fourth birthday in September. The HSE provided a wholly inadequate one additional hour under the home support service, bringing the hours provided to three. On 28 September 2011, Jonathan Irwin, CEO of the Jack and Jill foundation, wrote to the HSE and put forward solutions for the situation. First, he requested that the HSE put a carer into the Ryan home who would provide respite for the family and give them a break, just as the Jack and Jill foundation carer does today. The HSE stated that this is not an option in south Tipperary. Why not? JJ's current carer, who is funded by the Jack and Jill foundation, is more than happy to sign up with any agency funded by the HSE. Second, he requested the HSE to put in a home care package. It seems that home care packages in this country are exclusively for the elderly, contradicting the HSE's own policy to provide care in the home for anyone who needs it. We know for certain that caring for people at home is much more cost effective than caring for people in hospital. Again, this appears to be a no-brainer. Third, he requested the HSE to make direct payment to the Jack and Jill foundation to continue with the current arrangement. This is the last resort option and only on the table because the foundation will not abandon this family.

On 21 November 2011, the HSE south director of operations, Pat Healy, rejected these solutions. Instead he suggested that the family consult with the Brothers of Charity to examine relocating resources already provided to JJ in a different way. This means that JJ's parents have to make a decision every day on whether he is well enough to attend the day services. This is not a workable solution.

The Jack and Jill Foundation has made a complaint on JJ's behalf to the Ombudsman for Children, Emily Logan, who has appointed an investigative team to examine JJ's case.

Alan Shatter (Dublin South, Fine Gael)
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I thank the Senator for raising this matter. I am taking this Adjournment on behalf of the Minister of State, Deputy Lynch, because she is indisposed, and I want to outline the position on the matter raised by the Senator.

I understand that the family concerned are in receipt of six and a half hours home support from the Jack and Jill foundation and three hours home support from the Health Service Executive. Following a meeting with the Brothers of Charity on Monday, 7 November, and in consideration of the fact that the family could not avail of respite services on offer due to the child's condition, the family were advised that they could utilize a total of 140 hours from one mid-week and one weekend of residential respite per annum. These hours could be used by the family on a regular basis or to increase or decrease the support in the home as required. The Brothers of Charity have written to the family and left an open invitation to the family to revert to them.

Specialist disability services are provided to enable each individual with a disability achieve his or her full potential. Services are provided in a variety of community and residential settings. Services are provided either directly by the HSE or through voluntary service providers. Voluntary agencies provide the majority of services with and on behalf of the Health Service Executive.

While there are many examples of good practice and commitment and initiative of dedicated staff and management, challenges remain in the manner in which disability services are currently configured and delivered. These services have been developed by individual service providers and reflect the individual experience and expertise of providers in meeting local needs. However, as they have developed independently and were often established to serve one specific group of children or clients only, the result is that there is wide variation in the services available in different parts of the country and for different categories of disability.

The HSE has recognised the need to increase the level of consistency and standardisation in the way early intervention services and services for school-aged children with disabilities are delivered. A major priority for the Government in the coming months will be to finalise the current value for money and policy review of disability services to ensure that existing funding for people with disabilities is spent to best effect. It is now more important than ever that large scale spending programmes of this nature are subject to detailed periodic review. The VFM efficiency and effectiveness review will make recommendations that will ensure that the very substantial funding of €1.5 billion provided to the specialist disability health sector is used to maximum benefit for persons with disability, having regard to overall resource constraints which affect all sectors at this time.

Home care packages are currently provided, on occasion, for persons with a disability. They may include home support services, nursing services and home help, with multidisciplinary supports as appropriate. This home care and support package may be an alternative to attending a day or residential service and will be provided following completion of an appropriate assessment process. Usually home support and care packages are provided when it is neither feasible nor appropriate for individuals to attend residential or day services. I note particularly what the Senator has to say about the young person in question.

The Jack and Jill foundation service is part of a range of services provided to families funded by the HSE and other service providers for children with life limiting conditions. There are approximately 1,300 children in total. Many children availing of services provided by the Jack and Jill foundation also avail of other specialist hospital and community health supports and disability services. The Health Service Executive is committed to working with the Jack and Jill Children's Foundation to ensure that all children with life limiting conditions receive services on an equitable basis and through a standardised approach to be progressed through the children's palliative care steering group. The national policy, Palliative Care for Children with Life-Limiting Conditions in Ireland, will ensure a national approach to the provision of services for children with life-limiting conditions. All services and service providers will be governed by this approach.

I personally do not regard it as appropriate that we have such wide discrepancies across the country in regard to the level of service that has been provided. It is important that home care packages, where appropriate, are made available in assisting the care of young people, such as the young person to whom the Senator refers, and not just confined to older people. I would like to invite the Senator to furnish to me copies of the November correspondence with the HSE to which she made reference. I assure her I will bring that correspondence directly to the attention of the Minister of State, with a view to seeing if there is any further assistance that can be provided by the HSE to this family and to ensuring that there is full recognition of the needs of the child concerned and the pressures under which the family operate.

I am acutely conscious that the Jack and Jill Children's Foundation is primarily concerned with children up to the age of four years, and that the foundation provides substantial additional care to children over that age, due to the current inadequacies of some of the services provided by the State. I have raised this issue on a number of occasions with the Minister for Health. He also has concerns about how we address these matters. I would be happy to hand over the correspondence mentioned by the Senator to the Minister of State.

Mary Ann O'Brien (Independent)
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The Minister's final words gave me great comfort, because I feel that if I pass on the correspondence, we can go a little bit further.

The Brothers of Charity is a wonderful organisation and I thank it so much for being in touch but, unfortunately, these little children do not really do well in respite. They normally end up with terrible reflux chest infections and they end up with worse problems than they started with. It sounds great in theory.

Home care is quite simple, even though these children are extremely ill and even though they need to be tube fed. We at the Jack and Jill foundation have proven that it is a fairly simple equation. The foundation would be prepared to extend its care up to six or seven years, but we need that little bit of help with funding, because we believe we can do a good value for money job. I thank the Minister for listening to me and I really would appreciate if the Minister brought it further because this family are in great despair and it is a bad time of the year.

Alan Shatter (Dublin South, Fine Gael)
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I am a great admirer of the work done by the Jack and Jill foundation. If the funding was available and I had the power in the morning, I would make it available to facilitate the service continuing up to the age of six and to relieve some of the financial pressures on the foundation. As the Senator knows, there are huge financial difficulties. There is a huge battle to meet the diversity of needs, pressures and obligations in the health service. There is a huge battle for the Minister for Health and the Minister of State, Deputy Lynch, to fund existing services, and instead of room for expansion on additional expenditure, we have to effect substantial additional expenditure reductions due to the appalling state of the national finances, with so much more spent by the State than it receives in income.

I am happy to follow up this case with the Minister of State. I do not want to make promises that cannot be kept. I draw the correspondence to her attention. I want to ensure anything that can be done will be done in so far as she has any possible room to intervene with the HSE or follow up matters.

I am very conscious there are often dangers and possible health risks in a young person such as the person described by the Senator moving out of the home environment. With all the pressures family members are under they are familiar with dealing with such a young person in the state of extreme difficulty described by the Senator. There is a huge advantage in a continuity of care from a third party who has been involved at nursing level with the young person for some time, as opposed to others who may not be as familiar with that person's condition being brought in where the more experienced person may be readily available and willing to continue, provided they could be appropriately funded.