Thursday, 30 September 1999
Dáil Éireann Debate
10. Mr. Hayes asked the Minister for Health and Children when his Department will be in a position to fund the medical services provided at Our Lady's Hospital, Crumlin, Dublin 12, to cater for people who suffer from epidermolysis bullosa; and if he will make a statement on the matter. [18226/99]
26. Mr. Rabbitte asked the Minister for Health and Children if funding for the nurse dedicated to supporting families of sufferers of epidermolysis bullosa will be continued beyond February 2000; and if he will make a statement on the matter. [18257/99]
70. Mr. Finucane asked the Minister for Health and Children if he will provide the moneys required in 2000 to enable Crumlin children's hospital retain the epidermolysis bullosa liaison nurse funded by a trust fund which will be exhausted by the beginning of next year. [18308/99]
101. Mr. Shatter asked the Minister for Health and Children if funding will be allocated to Crumlin children's hospital for the year 2000 to provide moneys required to enable the hospital retain the epidermolysis bullosa liaison nurse based at the hospital whose position has up to now been funded by a trust fund which will be exhausted by the beginning of 2000. [18403/99]
109. Mr. Shatter asked the Minister for Health and Children if he will provide the moneys required in 2000 to enable Crumlin children's hospital retain the epidermolysis bullosa liaison nurse funded by a trust fund which will be exhausted by the beginning of next year. [18412/99]
The paediatric dermatology service at Our Lady's Hospital for Sick Children, Crumlin, includes the provision of care for children affected by epidermolysis bullosa, or EB. The hospital has identified a need for the further development of its dermatology service, which includes the provision of continued support services for children affected by this condition, with particular emphasis on the role of the EB nurse specialist, and has submitted a proposal to my Department in this regard. The proposal is under consideration by the Department.
This proposal is linked to a similar proposal from St. James's Hospital for the development of its dermatology service in terms of joint consultant appointments. The continuation of the EB nurse specialist role in particular and the further development of the dermatology service in general at Our Lady's Hospital for Sick Children will be the subject of discussions with the hospital in the context of its priority funding requirements for next year. However, while the Estimates process is still ongoing, I hope that funding for the specialist nurse should be available next year provided the authorities at Our Lady's Hospital for Sick Children consider it a development priority in the year 2000.
Mr. Shatter: Has the Minister any indication  yet as to whether the hospital considers it a service development priority? Will he ensure this service is provided as it has proved to be of great and vital importance in dealing with this very difficult illness?
Ms McManus: Perhaps the Minister could adopt a slightly different approach to this. When he considers this matter, perhaps he could take into account that the liaison nurse provides a very important role for the parents and families of people with this condition. There is no worse condition for a child to have than this one. It is enormously distressing and destructive, physically and emotionally, not just for the victim but for the family as a whole. We are not talking about much money nor are we talking solely about a hospital programme for dealing with the condition, we are talking about people under stress, sometimes in circumstances which require daily heroism. While the Minister is taking into account the larger issues of the planning of the hospital, could the position of the nurse be guaranteed to the 200 to 300 sufferers of this condition, some of them more severe than others? I cannot imagine a worse condition than I have seen in some people suffering from this illness. Will the Minister take a specific view regarding the liaison nurse?
Mr. Cowen: Service developments should be agreed between the Department, hospitals and boards. It is the best way of ensuring we all work on the same track. Otherwise, one could be accused of making arbitrary decisions without reference to practice in hospitals and health boards. The process is a good one. I am sure the people in Crumlin recognise the work the EB nurse specialist does. If that is the case and given that the funding was provided for a few years up to now, I expect the Crumlin hospital will say that this is a priority development for next year. If it is, I will accommodate it.
Ms McManus: Much of the care takes place in the home and it is not always possible for a hospital with its own priorities to acknowledge and understand the circumstances within families. Perhaps the Minister could take that into account. It is not solely a hospital responsibility and the children who suffer from this condition require an enormous amount of care. They are often isolated because of the rarity of their condition. The role of the liaison nurse, while in medical terms may not be seen as the highest priority, in human terms is of absolute necessity to those families struggling to cope with what is a devastating condition.
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