Terence Flanagan (Dublin North East, Independent)
Link to this: Individually | In context | Oireachtas source

This is an extremely important issue. I am pleased to have this opportunity to raise it and I thank the Minister for Health for being present to respond to this issue.

The need for more beds to be provided in Beaumont Hospital for cystic fibrosis patients is an urgent issue. I welcome the substantial advancement of services for cystic fibrosis patients in Dublin in recent years. Along with the opening of the outpatient facility at Beaumont Hospital, a dedicated cystic fibrosis unit at St. Vincent's University Hospital opened in 2012, and newborn screening for the disease has been rolled out nationwide. That is very much to be welcomed.

Beaumont Hospital is one of three major centres in Ireland for adults with cystic fibrosis but currently there is a shortage of inpatient facilities for patients with the disease. I am concerned that those who require a bed may not be able to access one and may have to wait at home until one becomes available. Alternatively, patients may have to access a bed on a ward if there is no dedicated bed available, increasing the chance of infection. There are concerns that the current situation results in the most severe cases of cystic fibrosis being prioritised while those with less severe symptoms are at risk of not getting the full treatment they require, which in turn has a negative impact on their condition.

There are approximately 120 patients with cystic fibrosis attending Beaumont Hospital at present and this number is likely to increase. We know that Ireland has the highest rate of cystic fibrosis in the world, with approximately 50 new cases diagnosed each year. The incidence of the disease in Ireland is four times higher than in the US and the rest of the European Union.

Beaumont Hospital opened a new purpose-built, dedicated outpatient facility at Beaumont for patients with cystic fibrosis in 2010, enabling patients to be treated on a day-care basis. The 2,500 square foot purpose-built unit provides invaluable services to cystic fibrosis patients, including outpatient clinics, a drop-in centre for clinical assessments and the provision of treatments that would otherwise require hospitalisation, including infusions and antibiotic therapies, psychology, physiotherapy and dietetics. Thankfully, the care provided at the new centre means that fewer cystic fibrosis patients are being admitted as inpatients via the emergency department, which is helping to minimise the risk of exposure to possible sources of infection.

However, there are currently only four isolation rooms available for cystic fibrosis patients at the hospital. Isolation rooms are vitally important for cystic fibrosis patients; they contribute to better health and prolong life expectancy, as there is no risk of infection from other patients in the hospital or in the room. Constituents have raised concerns with me that the four isolation rooms currently available are permanently needed and filled with patients waiting for an immediate transplant and that more beds are desperately needed.

Cystic Fibrosis Ireland has been campaigning for quite a number of years regarding the need for more beds. Its campaign, Beds for Beaumont, seeks to raise €12.5 million to provide for at least 12 inpatient isolation rooms to accommodate more patients at the hospital. I am pleased to confirm that the area manager of the HSE in north Dublin advised me recently that the HSE recognises that there is a need for more inpatient single-room accommodation for cystic fibrosis patients at Beaumont Hospital and that it is going to put forward a business case. Can the Minister advise whether this is one of his priorities and, as he represents north Dublin, that this area will be urgently examined?

James Reilly (Dublin North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank the Deputy for raising this important issue. It is one in which I have had a keen interest since I first stood in Dáil, and the issue of cystic fibrosis was the first matter I raised in an Adjournment debate in this House.

The Government is acutely aware of the challenges that people with cystic fibrosis and their families face in managing their condition. It was a matter of grave concern to us all that ten years ago the average life expectancy of people with cystic fibrosis on this side of the Border was ten years less than those on the other side of the Border. Some of the factors that influenced that were the lack of newborn screening, delayed diagnosis, overcrowding in emergency departments and the lack of single en-suite rooms. We are addressing those issues and although we have not completely addressed them, we have made a good deal of progress, as the Deputy outlined in his contribution.

It is always the aim of health care professionals to avoid hospital admissions for cystic fibrosis sufferers wherever possible in order to minimise the risk of exposure to infection. Beaumont Hospital provides services to adults with cystic fibrosis in a dedicated outpatient facility which is primarily focused on providing ambulatory care to people with cystic fibrosis. The dedicated cystic fibrosis outpatient unit, to which the Deputy referred, facilitates a comprehensive range of multidisciplinary services; these include outpatient clinics, a drop-in centre for clinical assessments with medical consultants and nurses, and the provision of treatments that would otherwise require hospitalisation, such as infusions and antibiotic therapies, assessment of pulmonary function, physiotherapy, dietetics and psychology. The consultation and treatment rooms benefit from specialist air filtration systems for the purposes of infection control.

Where admissions are unavoidable, there is a need for dedicated accommodation in an environment which allows appropriate isolation for improved infection control. It is Department of Health policy that there must be sufficient inpatient beds available nationally to treat all people with cystic fibrosis who require hospitalisation in single en-suite rooms.

The Nutley Wing at St. Vincent's University Hospital, which was built at a cost of €29 million and opened in the summer of 2012, houses a dedicated cystic fibrosis unit and represents a major improvement in the care of cystic fibrosis patients in Ireland.

The hospital currently treats 330 adults, which accounts for more than 50% of the cystic fibrosis adult population.

Due to the proactive management of cystic fibrosis patients through its dedicated outpatient facility, Beaumont Hospital rarely experiences emergency admissions of cystic fibrosis patients. Access to single en-suite rooms is prioritised for patients with cystic fibrosis who require elective admission for prophylactic antibiotic therapy or other treatment on St. Paul's Ward, which is the specialist respiratory ward.

In discussions with the national clinical care programme and the clinical team on site it was identified that due to the increase in numbers there is a requirement for more inpatient single rooms for Beaumont Hospital's cystic fibrosis patients. Beaumont Hospital is working through a number of options and anticipates putting forward a business case for the 2015 national service plan. This will be considered in the context of service development in the Dublin north-east hospital group. I welcome to the country Mr. Tony O'Connell, the new CEO of the group. A number of positive developments in cystic fibrosis services for the Dublin north-east hospital group are coming on stream at present, with the opening last week of a new outpatient unit in Drogheda, adjacent to Our Lady of Lourdes Hospital, which will treat children and young adults from Meath, Louth and north County Dublin, and the imminent official opening of an outpatient cystic fibrosis suite at Cavan General Hospital.

Thankfully, the prognosis for this rare but devastating disease has vastly improved over recent years due to significant investment in services and earlier diagnosis. I give the House my assurance that the Government is committed, along with the HSE, to continued investment in research projects and to training physicians to help people with this condition to live longer and healthier lives. We will work harder to limit the impact of this disease until such time as a cure can be found.

Terence Flanagan (Dublin North East, Independent)
Link to this: Individually | In context | Oireachtas source

I thank the Minister very much for his response and his commitment in this area. He has made progress, but more progress is needed, which will no doubt require more money in due course. I am here to make the case that extra isolation room beds are needed as soon as possible. At present, 120 patients with cystic fibrosis attend Beaumont Hospital and best practice is that isolation room beds for 10% of this number, which is 12, should be provided at Beaumont Hospital. This is an international rule of thumb. I accept the fact that the HSE is examining this and will include it in its 2015 national service plan, and that it recognises that four beds are not enough when it should be three times this number.

There is an issue with regard to the fact that patients here have a shorter life expectancy than elsewhere. No doubt this can be examined further. Improvements and more isolation beds are needed. I ask the Minister to respond by saying he is committed to increasing the number of beds from four. It would be very much appreciated.

James Reilly (Dublin North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

To respond to the final matter raised by the Deputy, of course we are very much committed to a new strategic development on how Beaumont Hospital is organised and the paucity of single beds in the hospital as a whole. It was built in the 1980s but with a plan hailing from the 1950s and 1960s. It is in need of modernisation. No modern hospital would be built on the basis of big open wards. It would comprise mostly private rooms, as we intend in the new national paediatric hospital. I apologise - I meant single rooms, not private rooms, and these single rooms would be en-suite. More rooms are available in Beaumont Hospital but they are not dedicated solely to cystic fibrosis sufferers.

I accept that it is extremely worrying for people who have cystic fibrosis and their families that if their condition is exacerbated they must sit in an emergency department. Last week I met representatives of the clinical programmes, Mr. Philip Watt from Cystic Fibrosis Ireland and Professor Gerry McElvaney and discussed examining an improved patient flow mechanism so patients do not have to go through the emergency department.

I have not mentioned to date the decision of the Government to make available the new drug Kalydeco, which, for particular genotypes of cystic fibrosis sufferers, has proven to be a bit of a wonder drug. Last week I met a young lady who has been on the drug for over a year. In this period of time she has not been hospitalised on a single occasion. Normally in a given year she would have been hospitalised at least three times for an average of two weeks on each occasion. The improvement in her quality of life has been phenomenal. There is also an improvement from the taxpayer's point of view with regard to saved admissions. The drug is very expensive - there is no question about this - but it works for those for whom it is suitable, and genotyping means we know those who will benefit most from it. This will change what is now seen as best practice with regard to the number of single en-suite beds required for patients with cystic fibrosis, as will further developing community facilities, because, as I stated, the aim is to keep patients with susceptibility to infection, such as those with cystic fibrosis, out of hospital if at all possible and reduce their exposure to harmful pathogens which are, sadly, always in our hospitals to a greater or lesser extent.