James Reilly (Dublin North, Fine Gael)

The Minister will always fight her corner, but the people who have to suffer the consequences know the reality.

The Cystic Fibrosis Association of Ireland, CFAI, is seriously concerned about the impact the moratorium on recruitment and the HSE budget constraints is having on front line services. Key multidisciplinary cystic fibrosis staff such as physiotherapists, social workers and psychologists are not being replaced when they go on maternity or sick leave. With regard to Mid-Western Regional Hospital in Limerick, on 26 May the CFAI wrote to the hospital management to express its concern about the lack of physiotherapy cover for child CF patients at the hospital. The paediatric cystic fibrosis physiotherapist at the hospital is on sick leave at present and is unlikely to return in the near future. In the meantime, there is no CF specialist physiotherapist.

The Minister will be aware that the absence of a CF physiotherapist at the hospital will have a damaging impact on the health of the 75 CF children that attend the outpatient centre. Physiotherapists are absolutely essential for the treatment of cystic fibrosis and the removal of mucus from the lungs of CF patients. Of the 75 children, five are acutely unwell and are in immediate need of intensive physiotherapy. The physiotherapist has not been replaced and the CFAI is not satisfied with the response received to date. How could it be? Overall, the CFAI is extremely concerned about the cumulative effect the embargo on recruitment is having on the delivery CF services. When will the physiotherapist be replaced in Limerick?

Early detection and treatment of CF is essential in improving the life expectancy of CF patients. A working group, established in 1999, reported in 2004 about the extension of newborn screening to include CF, but nothing happened until 2009. In May 2009, at the CFAI annual conference in Cork, the Minister for Foreign Affairs, Deputy Micheál Martin, announced that the newborn screening of people with CF would commence in July 2010. Since the announcement the CFAI has played an active role in participating in the steering group, which was established to advise on the extension and integration of CF screening. The introduction of CF screening for newborns has been long expected and long delayed. It has been introduced practically everywhere else in Europe but not here. Given the fact that we have missed the July deadline, will the Minister reassure patients that it will be introduced in 2010? Will the moratorium on recruitment impact on the recruitment of the necessary staff for the roll-out of neo-natal screening?

The number of organ donations and transplants has grown steadily across the EU and thousands of lives are saved every year through this medical procedure. The situation, however, is very different in Ireland. Only four double lung transplants were carried out in the Mater hospital over the past two years, despite the fact that 30 CP; patients are waiting for double lung transplants in Ireland at present, with a further 20 people waiting for single lung transplants. The rate of double and single lung transplants compares very badly to that of kidney and liver transplants. The problem is not that we have insufficient organs but rather the time gap between the harvesting of organs and the way they are subsequently used.

In its 2010 national service plan, the HSE states it will establish an organ donation and transplantation unit within existing resources in 2010. Given that we are half way through 2010, can the Minister provide information on the status of this unit? Furthermore, there is no mention of the human tissue Bill, which has been languishing in the Oireachtas for some time now. At the moment it is number 65 on the Government legislative programme list. The Cystic Fibrosis Association of Ireland is actively campaigning for the rapid enactment of the human tissue Bill and to appoint two dedicated lung transplant surgeons as a matter of urgency - Mr. Freddie Wood has recently retired from the Mater hospital - and for a national transplant office and associated team of transplant co-ordinators, consistent with good international practice.

Much of the media coverage in recent times has focused on the need for the development of cystic fibrosis services within Dublin. However, we must not forget the need to improve cystic fibrosis facilities outside of Dublin. Deputy Coveney is familiar with the great fundraising efforts in the south which have funded two rooms for cystic fibrosis treatment but I question whether they are getting support from the HSE. In Waterford, a cystic fibrosis consultant for adults has been appointed but he does not have a consulting room which means he can only treat adult patients in a ward. It is clearly a terrible waste of a very expensive resource when the necessary tools to do the job are not provided. How will the reduction in the capital budget affect the development of cystic fibrosis facilities nationwide?

The reality for patients is still quite stark. Ms Orla Tinsley spoke on the radio recently and she spoke to me tonight from her hospital bed. She was admitted to a ward with five other patients for a period of five days with only one nurse, usually an agency nurse, who knew little about the ward and even less about cystic fibrosis. She was transferred to a semi-private room five days later. The other patient became quite confused at night and Ms Tinsley regularly woke to find this lady standing at her bed. I heard her interview and she certainly held no grudge against the lady sharing her room. The reality for Ms Tinsley is that as a sick person any infection further damages her lungs and reduces her life expectancy. She needs her rest and she needs to be assured she will not be exposed to infection unnecessarily. We all know that this is the primary reason we have such poor outcomes for cystic fibrosis patients while their cousins across the Border live ten years longer. After a number of nights, she was forced to ask her mother to mind her at night.

I hope this time the promise will bear fruit and no matter what the obstacles, rather than leaving it to bureaucracy to sort it out, the Minister will take a personal interest and make this a reality for the people who are struggling to prolong their lives. I inform the Minister that four friends of Orla Tinsley have died in the past 18 months.

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