Breen raises plight of Clare Cystic Fibrosis sufferers

July 9th, 2008 - Pat Breen

I wish to raise on the Adjournment Debate as a matter of urgency the situation regarding facilities for Cystic Fibrosis sufferers in the Mid-West Region both adult and children, if it is the intention of the HSE to appoint a Specialist Consultant, the concerns regarding the non-filling of two CF Nurse Specialists, the splitting of inpatient and outpatient services in the Region, the lack of isolation facilities and the need for the Minister for Health and Children to clarify the situation regarding the funding allocated to CF Services in the 2006 and 2007 budgets.

 

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Deputy Pat Breen

 

 I am delighted to be a voice for cystic fibrosis sufferers and to highlight the issues on their behalf.  There are approximately 1,100 sufferers in the State and life can be difficult for them.  I wish to raise the issue of facilities for cystic fibrosis sufferers in the mid-west region.  Cystic fibrosis is Ireland‘s most common life-threatening inherited disease with one in 19 people carriers of the CF gene.  CF affects the glands and damages many organs, including the lungs and the digestive system, and sufferers are prone to constant chest infections and malnutrition.  Many advances have been made in recent years but more remains to be done.

  There are approximately 1,100 CF sufferers in Ireland and we all hear stories of how sick they are and how they are afraid to enter hospital in case they pick up an infection such as MRSA or C.difficile.  The situation is more acute for CF patients because many of them are afraid they will die.   They cannot mix with other patients and going through an accident and emergency department is not an option.  I recently had a case of a 19 year old who was afraid to go to an accident and emergency department because he thought he would pick up an infection and die and we had to try to bypass the department to have him admitted to hospital.

  Approximately 30 CF patients from County Clare attend for treatment at the Mid-Western Regional Hospital in Limerick.  The current CF service at the hospital is provided by two consultant respiratory physicians providing inpatient and outpatient services in addition to their normal work.  A full-time consultant with a speciality in CF is required.   The present consultant is due to retire and when the position is advertised, a consultant with a speciality in CF should be appointed.  The provision of a dedicated adult outpatient unit is also essential.  Such a unit is available for children but adults cannot avail of same.    Progress has been made in some areas and funding was allocated in 2006 and 2007 to put in place a full medical multidisciplinary team, following an audit by the HSE in 2005 of the staffing levels at the hospital.  However, while a number of positions have been filled, there is serious concern regarding the position of two CF nurse specialist positions, which have not been advertised, even though funding has been allocated.  When will these positions be advertised and filled?

  There are also other issues.  For example, Internet access is not available in the CF area of the hospital for immobilised patients and no television remote controls are available.  I recently met representatives of the Clare branch of the Cystic Fibrosis Association of Ireland and they outlined the stories of the battles they fight every day for services.  I met a woman whose son died six weeks ago aged 23 and I admire her courage in playing a part with the association to highlight the plight of other sufferers.  I was amazed by her strength in speaking about her son’s plight.  She wants to do something for other CF sufferers in County Clare.  I hope that news of cutbacks will not affect progress on this matter.  CF patients and their families cannot wait and I urge the Minister of State to put in place the facilities at Limerick regional hospital because they deserve a better quality of life.

 

   Deputy Mary Wallace: I thank the Deputy for raising the issue.  The need to improve services for persons with cystic fibrosis has been identified by the Minister for Health and Children as a priority in the Estimates process over recent years.  Since 2006, additional revenue funding of €6.78 million has been allocated to the HSE to develop services for CF patients.  The executive has advised 44 additional staff dealing with cystic fibrosis have been appointed to date in Limerick regional hospital and eight other hospitals.  The necessary funding is available to facilitate the recruitment of a further 37 staff nationally, including staff for the mid-western region.

 With regard to the specific issues raised by the Deputy, the HSE has advised that the current adult CF service for the mid-west region is provided at Limerick regional hospital by two consultant respiratory physicians providing inpatient and outpatient services for adult patients.  The CF service for children is provided by a consultant paediatrician providing inpatient and outpatient services.  Two nurse specialists currently cover both the paediatric and adult CF services.  Both services are supported by a dedicated team, which includes a social worker, a dietician, a physiotherapist and a pharmacist.

  An audit of CF staffing at the Mid-Western Regional Hospital was carried out in 2005.  The HSE has since earmarked funding for the creation of 8.5 additional posts to enhance both the adult and paediatric CF service.  The additional staff includes a consultant respiratory physician with a special interest in cystic fibrosis and a consultant paediatrician with a special interest in respiratory medicine, supported by specialist nurses, a physiotherapist, a dietician, a social worker, a pharmacist and a medical scientist post.  The HSE has advised that the dietician, the social worker and 0.5 of the physiotherapist post have been filled, the consultant posts are under consideration and it is in the process of recruiting the remaining posts.

  The Mid-Western Regional Hospital, Limerick, has provided three dedicated rooms, which are ring-fenced for adult CF patients.  These rooms may be used for other patients if not required for CF patients.  Paediatric CF patients are accommodated in the paediatric unit.  The Minister is confident that these developments will significantly enhance the service provided for persons with cystic fibrosis.