Thursday, 13 October 2011
Cystic Fibrosis Services
I welcome the Minister of State. I wish to raise with her the provision of adult cystic fibrosis in-care beds at Cork University Hospital. She will be aware that in Ireland one in 19 people carry the cystic fibrosis gene. When two parents carrying the gene have a child, there is a one in four chance that it will be born with cystic fibrosis. While we are unique in that we have a higher incidence of cystic fibrosis than any other country in the western world and our record in this regard is shameful. The statistics indicate that average life expectancy for CF patients in the Republic is 16 years, whereas in the North it is 26 years and in Canada, 36. The level of care one receives often determines one's life expectancy. An organ donor transplant system is being put in place. While our organ donation record is good, it could be better.
On the provision of 11 beds in a ward currently vacant at Cork University Hospital, the Build4Life organisation has raised almost €2 million to fit it out. This is an entirely voluntary organisation - it has no paid staff. Mr. Joe Browne from Castleisland who has been pioneering this effort for many years received an allocation of funding through the previous Minister for Health and Children from the national lottery. However, to start and complete this project a further €300,000 is required from the Government through the national lottery. When PRSI, all taxes and so on have been paid from the total sum of €2.3 million, the organisation will have returned €450,000 to the Exchequer. As such, an allocation of €300,000 from the Government, on top of the €2 million already raised by the Build4Life organisation, would result in a return of €450,000 to the taxpayer. However, all the indications thus far from the Minister for Health, Deputy James Reilly, are that the Government cannot make any funding available.
While in a time of austerity one might say we cannot afford €300,000, when one considers there would be a return to the taxpayer of €450,000 following the spending of €2.3 million, it would make sense. Added to this is the moral argument that as a result of the provision of isolated beds people with cystic fribrosis would receive the care they deserve, resulting in a better quality of life and an altering of the shameful statistic of average life expectancy of 16 years. I, therefore, look forward to hearing the Minister of State's response.
I note that when in opposition the Minister made a number of pledges as to what he would do in this regard. Unfortunately, while he was available for meetings when in opposition, he is now unable to sit down with Dr. Plant, the cystic fibrosis specialist. Dr. Plant gained vast experience in Seattle and despite bringing that expertise to Ireland, he is not being given the resources he needs to ensure those with a low average life expectancy in Ireland, unlike others in the Six Counties, will have a good quality of life.
I am taking this Adjournment matter on behalf of my colleague, the Minister for Health, Deputy James Reilly, and I thank the Senator for raising it. I am glad to have an opportunity to outline the current position and speak about the scandalous neglect in this area in the past ten years, particularly at a time when we had more money than we knew what to do with it. The then Government could have resolved this issue, but it chose not to do so, which is a scandal we also need to address. The neglect of persons with cystic fibrosis is scandalous.
The Government firmly believes the needs of cystic fibrosis patients must be recognised and respected. The Minister for Health has stated his Department's policy that there must be sufficient in-patient beds to treat all people with cystic fibrosis who require hospitalisation. I am happy to say construction of the new 100 bed unit at St. Vincent's Hospital is well under way and due to be completed next year. The new building which will have single en suite rooms and isolation rooms will play a vital role in the treatment of patients with cystic fibrosis and a range of other conditions. Cork University Hospital has the second largest adult cystic fibrosis centre in Ireland. That centre caters for the needs of 145 attending adult patients from the Munster region.
In September 2007 Dr. Barry Plant was appointed as director of the adult cystic fibrosis programme at Cork University Hospital. Since his appointment, he has worked closely with various HSE services, philanthropic organisations such as Build4Life and the CFAI and scientific research agencies in advancing the needs of these patients. In June 2008, in consultation with the cystic fibrosis multidisciplinary team and the cystic fibrosis community locally, he submitted a statement of need for cystic fibrosis services to the executive management board of Cork University Hospital. This document which was approved by the board outlined a strategic plan to develop cystic fibrosis services in the hospital, including the provision of day and in-patient facilities.
The cystic fibrosis day centre caters for most clinical needs of cystic fibrosis patients. It includes five isolation rooms, a dedicated cystic fibrosis gym, a multidisciplinary team room and consultant rooms. The day centre was opened in May this year. The capital costs for this development were provided for through a partnership approach between HSE South and the Build4Life organisation.
Dr. Plant is working with the executive management board of Cork University Hospital to develop a designated in-patient unit, with en suite rooms for cystic fibrosis patients. A location has been identified for a combined designated adult in-patient facility and respiratory unit in a vacated ward on the Cork University Hospital campus. Provisional plans and costings have been made, with an estimated build cost of approximately €3 million. The hospital is working in partnership with Build4Life to co-fund this development.
To date, Build4Life has raised more than €2 million to support cystic fibrosis capital developments at Cork University Hospital. HSE South is examining ways to secure additional capital funding to complete the unit in the context of decreasing capital budget allocations in the current stringent climate. The need to develop the adult in-patient facility remains a board and HSE South priority and the HSE will continue to work with Build4Life to complete the project.
The Minister recently met the Cystic Fibrosis Association of Ireland and is keenly aware of the needs of people living with cystic fibrosis. The Minister is available to meet the Senator.
The Build4Life organisation has sought a meeting with the Minister who, to date, has refused to meet it. As I pointed out, if the Minister allocated €300,000 from national lottery funding, as his predecessor did, the spend of €2.3 million would result in a tax return of €450,000. There is no timeline for the provision of this service. The final line of the Minister's reply reads, "The Minister ... is keenly aware of the needs of people living with cystic fibrosis." People with cystic fibrosis die. They do not live with it. The Minister spent a long time in opposition and although I do not mean to beat him over the head about what he promised while in opposition, it would make financial sense for the Government to allocate €300,000 for the project because it will get €450,000 back. The Minister of State is taking the matter on behalf of the Minister but as he has not given any timeline for his Department or the HSE to put this project in place, it does not augur well for those living with cystic fibrosis. While we wait for him to make this a reality and allocate funding, people with cystic fibrosis will die.
The funding has been raised by voluntary organisations and only €300,000 is required from the Government. The Government would get that money back with €150,000 on top so anybody looking at that would think this makes much sense and the project should go ahead immediately. Nevertheless, the Minister is indicating that these people must continue to live with cystic fibrosis and people may die while they wait.
There is no disagreement about whether the unit is required. The Senator's language is not the type that should be used. I know people with cystic fibrosis and they have enough difficulty in their lives without listening to that sort of negative comment. There is no disagreement about the unit, which must be built, along with the isolation rooms. We all know what needs to happen. There is no timeline in the reply but it will be done in the shortest possible time. It will not take the ten years it was left to linger by the previous Government. It will come about much sooner and I agree entirely with the Senator that the quicker we get this done, the better the outcomes and greater the result. There is no disagreement in that respect either.
Dr. Barry Plant is an incredible physician in treating cystic fibrosis and his patients consider him a friend. He has a relationship with them that is quite unique because his understanding of their condition is unique. We know what needs to happen and the issue is being worked on. We hope to bring a resolution in the shortest possible time. We are currently in negotiations on sorting out the budget for the next three years because of the mess in which the country has been left. As part of that process we cannot allow projects like this to slide down the drain despite that mess. The process must be completed but the question is how we get the money to do it. I agree entirely with the Senator that any delay is unacceptable but unfortunately there will be a slight delay.