Orla Tinsley blogs ahead of her report on cystic fibrosis, which will be shown on Prime Time tonight:

Only five people with cystic fibrosis have received double lung transplants in the State since the Lung Transplant Unit opened in The Mater Hospital Dublin in 2005. Since then, unknown numbers of people with CF have died while waiting for new lungs.

Tonight on Prime Time we show how transplants affect patients and call for a more coordinated system of transplants.

Although there are two lists for Irish people with CF, one at The Mater and another in The Freeman hospital in Newcastle, people with CF, like myself, are left to decide which one is the better gamble. In tonight’s programme, we speak to two men on either side of the situation; one who has had a transplant and another who has been waiting for ten years. He has been on both lists for five years equally.

We also look at the lack of inpatient facilities in Ireland for cystic fibrosis patients and how this affects people's lives and life expectancy in the long term.

As someone who has been campaigning for an international standard of care for people with CF since 2005, I have witnessed first-hand how the slow pace of Government response to this crisis situation has had a detrimental affect on the physical and emotional health of young people living with CF. Many people who fought over the years for proper facilities or transplant care are not alive to see the progress that has been made and there is still so far to go. We need immediate, organised and dedicated action.

Orla Tinsley

You can see the promo for tonight's report below.

Statement of 24 March 2011 from the HSE in connection with the establishment by the HSE of a National Office for Organ Donation and Transplantation

The HSE has established a National Office for Organ Donation and Transplantation. The office will be lead by Professor Jim Egan Consultant respiratory and transplant physician at the Mater Misericordiae University Hospital. The office, will endeavour to enhance organ donation in Ireland and underpin the quality of outcomes for patients following organ donation in line with the European Directive on Organ Transplantation.

Professor Egan, Clinical Lead for the National Organ Donation and Transplantation Office said, ‘there is a need for organ donation and transplantation to be given a national focus and the establishment of this office will enable that to happen. We need to enhance the number of organ donations as a national priority and ensure that those patients awaiting organ transplant have the maximum opportunity of life saving treatment.’

Dr Philip Crowley, National Director of Quality, Risk and Clinical Care said the HSE recognised the need to bring greater focus to this area. ‘There is tremendous work being done in this area by doctors and nurses in our hospitals and this office will further support this work and enhance organ donation and transplantation.

Statement from the Minister for Health and Children, Dr James Reilly TD

I am acutely aware of the challenges that people with cystic fibrosis and their families face in managing their condition and I fully acknowledge the need for and support the provision of dedicated accommodation in an environment which allows appropriate isolation for improved infection control.

St Vincent’s University Hospital currently treats over 50% of the CF adult population and is the national tertiary centre for the treatment of adults with cystic fibrosis. Together with St Vincent's University Hospital and the Health Service Executive, we are taking every possible step in order to ensure earliest possible delivery of the new ward block at the hospital. Construction of the facility will take 18 months in total and completion is expected as early as possible in 2012.

This new building will provide 5 wards of twenty in-patient beds and will accommodate the needs of patients with cystic fibrosis and many other patients whose medical requirements necessitate single en suite facilities. One ward (20 beds) will be dedicated for use by cystic fibrosis patients. All of the 100 beds will be accommodated in single en suite rooms designed to the same standard. Twenty per cent of the beds on each of the wards will be isolation rooms. This represents best practice in terms of infection control. The new unit will also provide a day treatment facility for patients with cystic fibrosis which includes 10 day beds and it is a matter for the hospital to decide on the use and designation of rooms based on the clinical needs of patients.

In addition to the development of the new unit at Saint Vincent’s University Hospital, there have been many other developments in the provision of care for cystic fibrosis sufferers. The ambulatory care facility for the treatment of adult Cystic Fibrosis sufferers in Beaumont Hospital opened officially on the 26th October last year.

Nationally, there has also been a revenue investment of €6.78 million for services for people with cystic fibrosis, since 2006, which has enhanced staffing levels in the 6 designated specialist centres nationwide. This funding was provided to recruit 19 additional specialist staff, as part of a national initiative to improve services for people with cystic fibrosis. Funding for some 48 additional staff, including consultants, nurses and allied healthcare professionals has also been provided.

Cork University Hospital is one of 6 specialist centres providing services for both adults and children in the Cork area. The number of patients currently availing of the services are 84 children and 143 adults. A new facility for adult patients with cystic fibrosis has been developed on the main campus of the hospital and is due to be opened officially in May this year. I understand that this development has been possible due to the collaboration between the Cystic Fibrosis Association of Ireland, Build4life, the Adult Cystic Fibrosis Multi-disciplinary Team and the Executive Management Board of CUH. I am also aware that an independent CF fundraising group are presently trying to develop a day unit for children with CF. I commend the efforts and commitment of all involved.

The Mid-Western Regional Hospital Limerick provides services for 38 adults and 79 children with Cystic Fibrosis. Two Consultants, a Consultant Paediatrician with a special interest in Respiratory Medicine and a Consultant Respiratory and General Physician with a special interest in Cystic Fibrosis are now in post to meet the needs of both adults and children with Cystic Fibrosis.

It was announced in January 2011 that Planning Permission had been given for the Proposed Project at MWRH Limerick campus for the new Adult Inpatient and Outpatient Cystic Fibrosis facility which was commissioned and funded by the Mid Western Hospital Development Trust in August 2010. It is anticipated that this will go to tender this month with construction planned to commence in August 2011 and for completion by the end of 2012.

A total of 59 persons with CF attend University College Hospital Galway which is developing an adult CF service and is enhancing its existing paediatric service. The hospital has funding to develop an adult CF service and enhance the existing paediatric service. This funding was allocated to support the recruitment of 1.5 WTE consultant posts. The post of Consultant Paediatrician (0.5 WTE) with a special interest in CF was filled in February 2008 and a CF Clinic is held every week. A Consultant Physician/Respiratory with special interest in Adult CF - 1.0 WTE was appointed in March of this year.

There are also proposals for the provision of a day service Cystic Fibrosis Centre to be attached to the Paediatric outpatient department at Mayo General Hospital. This centre is being built on the basis of voluntary fundraising and it is expected that construction will commence by the end of this year.

The key objective in primary care policy is to develop services in the community which will give people direct access to integrated multi-disciplinary teams of general practitioners, nurses, health care assistants, home helps, occupational therapists, physiotherapists and others. The Health Service Executive is now working with St. Vincent’s University Hospital to identify opportunities for patients who do not require tertiary level care to be treated close to home where adult services have been developed in other specialist centres nationwide. The aim is to provide appropriate treatment and care as close as possible to patient’s homes and to avoid where possible admission to hospital.

There are a number of services currently being provided through the Public Health Nursing Services for people with cystic fibrosis including parenting advice, developmental assessments and where appropriate, Home Help services. Primary care physiotherapists are also available at community level. Assessments and interventions are carried out in a location most appropriate to the needs of the person, for example, at home, at the primary care centre or at the local physiotherapy outpatient department.

One factor which has contributed to the progression of care for people with cystic fibrosis has been the creation of data registries, which gather information from individual patients and provide a pool of accurate data that can be used for research purposes. I am pleased that an independent registry for Cystic Fibrosis, funded by the State, has been established and will help us make international comparisons over time regarding the incidence, treatment and outcomes for patients.

It is estimated that the number of adults with cystic fibrosis will continue to grow and I understand that treatment and support services will need to be planned effectively. Early diagnosis and treatment of cystic fibrosis has been shown to provide better outcomes for patients and I am happy to say that progress is being made by the HSE in the introduction of the national screening programme for newborns, expected to be operational this year.

While the current economic environment provides challenges to each and everyone, this Government and I will continue in our efforts to progress developments for cystic fibrosis sufferers as quickly as possible.