HEALTH MATTERS 95 cystic fibrosis
services will be dependent on charitable fundraising.
• The embargo on recruitment within the health services, which has already caused the non-replacement of some key staff in CF multi-disciplinary teams, such as social workers and psychologists and on occasion CF nurses. The CFAI is monitoring this situation closely. • Cutbacks in social welfare support and additional charges for people with a disability, including those with CF.
“cystic fibrosis is the most prevalent inherited disease in ireland, with one in 19 of the population carriers of the cf gene and around 1,300 people with cf.”
It is a sad fact in 2010 that some CF patents remain in multi-bed wards or in single-bed units that do not have adequate en-suite isolation facilities to prevent cross infection. It is equally unacceptable that in some hospitals, CF patients are exposed to unnecessary risks because of inappropriate location of Cystic Fibrosis out-patient facilities or lack of a dedicated CF day centre. Cystic Fibrosis patients are now living longer and there are now slightly more adults than young people with CF. There is a concomitant increased need for CF adult services throughout Ireland. There has been a historic deficit in adult Cystic Fibrosis services. This was highlighted by the campaign for the new CF facilities in St Vincent’s University Hospital, Dublin, in 2009, and continues to be highlighted in other CF Centres in Ireland such as the Mid-Western Hospital in Limerick and in Waterford Regional Hospital, where more resources are particularly required for adult services. Despite the skills and efforts of the
concerned hospitals and clinicians, the rate of double-lung transplantation in Ireland remains unacceptable, with only three
transplants in Ireland carried out in the past two years. There is an urgent need for two dedicated lung transplant surgeons in Ireland to deal with the backlog of 50 people awaiting lung transplants, including the 30 or so with Cystic Fibrosis. This backlog is primarily the result of systemic failures within the transplant/organ donation policy framework rather than one component, and requires urgent attention to prevent more patients dying on the transplant waiting list or being overly reliant on the transplants carried out in Freeman’s Hospital, Newcastle. The Human Tissue Bill, 2009, when enacted, will put organ donation and transplantation on a sound legislative footing for the first time. We would like to see this Bill given high political priority. In its Corporate Plan, the HSE has promised that a Transplant Unit will be established in 2010, which is an important step in the right direction. The CFAI would like this unit to be given sufficient powers or resources to undertake its important tasks, including ensuring that the lung transplant programme is at least as effective as the kidney programme in Ireland. The CFAI has called on the Government to establish a Cystic Fibrosis Reference Group at national level which would, among other issues, develop Key Performance Indicators (KPI) for all CF Centres in Ireland. We have been given an assurance that such a group will be established and this is indeed to be welcomed. There have been important strides made in 2009. Most significant was the publication of the long-awaited HSE CF Services Report in October 2009. This report in large part endorsed the vision and approach set out in the Pollock Report commissioned by the CFAI in 2005, which provides the blueprint for: • Dedicated CF Centres in Ireland that are in effect ‘Centres of Excellence’. • The recognition that CF can only be managed effectively through multi- disciplinary teams which includes consultants, doctors, specialised CF nurses, physiotherapists, nutritionists, psychologists and social workers. • The critical importance of preventing cross-infection based on international standards, particularly in respect of
Pseudomonas and B.cepacia, but also MRSA and other infections that some hospitals have struggled to prevent recurring • The introduction of screening for CF for all newborn babies as part of the existing Newborn Screening Programme The HSE has promised that the new en- suite in-patient and dedicated out-patient facilities in St Vincent’s University Hospital will be completed by the winter of 2011. The CFAI will continue to insist that the new unit will be built on schedule and will have the 34-bed in-patient capacity recommended by the CF Medical and Scientific Committee. The CFAI is actively involved in the HSE steering group to extend the existing Newborn Screening Programme to include Cystic Fibrosis for the first time as part of the ‘heel prick test’. A further ‘sweat test’ is used to confirm a positive result for CF. Every week, three cases of Cystic Fibrosis may be undetected at birth because of the absence of CF screening. There is a growing body of evidence to prove that the early detection of CF can make a considerable difference to the long-term prognosis. The CFAI welcomes the commitment to bring in screening by the end of 2010.
“the Human tissue bill, 2009, when enacted, will put organ donation and transplantation on a sound legislative footing for the first time.”
Patient Registries play an increasingly important role in the management of disease in Ireland, for example, producing demographic data that shapes where CF services should be located. In this context it is important to pay tribute to Linda Foley, who gave many excellent years service as Director of the CF Registry and who died suddenly in December 2009. She will continue to provide inspiration for all those concerned with improving CF services in Ireland.
Page 1 |
Page 2 |
Page 3 |
Page 4 |
Page 5 |
Page 6 |
Page 7 |
Page 8 |
Page 9 |
Page 10 |
Page 11 |
Page 12 |
Page 13 |
Page 14 |
Page 15 |
Page 16 |
Page 17 |
Page 18 |
Page 19 |
Page 20 |
Page 21 |
Page 22 |
Page 23 |
Page 24 |
Page 25 |
Page 26 |
Page 27 |
Page 28 |
Page 29 |
Page 30 |
Page 31 |
Page 32 |
Page 33 |
Page 34 |
Page 35 |
Page 36 |
Page 37 |
Page 38 |
Page 39 |
Page 40 |
Page 41 |
Page 42 |
Page 43 |
Page 44 |
Page 45 |
Page 46 |
Page 47 |
Page 48 |
Page 49 |
Page 50 |
Page 51 |
Page 52 |
Page 53 |
Page 54 |
Page 55 |
Page 56 |
Page 57 |
Page 58 |
Page 59 |
Page 60 |
Page 61 |
Page 62 |
Page 63 |
Page 64 |
Page 65 |
Page 66 |
Page 67 |
Page 68 |
Page 69 |
Page 70 |
Page 71 |
Page 72 |
Page 73 |
Page 74 |
Page 75 |
Page 76 |
Page 77 |
Page 78 |
Page 79 |
Page 80 |
Page 81 |
Page 82 |
Page 83 |
Page 84 |
Page 85 |
Page 86 |
Page 87 |
Page 88 |
Page 89 |
Page 90 |
Page 91 |
Page 92 |
Page 93 |
Page 94 |
Page 95 |
Page 96 |
Page 97 |
Page 98 |
Page 99 |
Page 100 |
Page 101 |
Page 102 |
Page 103 |
Page 104 |
Page 105 |
Page 106 |
Page 107 |
Page 108 |
Page 109 |
Page 110 |
Page 111 |
Page 112 |
Page 113 |
Page 114 |
Page 115 |
Page 116 |
Page 117 |
Page 118 |
Page 119 |
Page 120 |
Page 121 |
Page 122 |
Page 123 |
Page 124