The appointment of an immunology consultant was recommended as long ago as 1991 in a report on paediatric pathology services in Dublin by the hospitals' authority, Comhairle na nOspideal. In the intervening 16 years, child health professionals have repeatedly called for the appointment to be made, to no avail, even though there are two highly qualified immunologists employed as academics in Cork and Galway.

Immunology is a growing branch of paediatric medicine worldwide and there is an 18- to 24-month waiting list in Ireland for children referred for initial investigation.

About 70 people in this country have been diagnosed with immunological conditions. Early diagnosis is crucial for the treatment of immune deficiency, which can predispose children to life-threatening infections.

With the Department of Health and Children and the HSE poised to launch the project for a new state-of-the-art national paediatric hospital, medical workers and health lobbyists say it beggars belief that the nation's children still have no consultant immunologist. They have calculated, in a formal submission to the HSE, that it would cost a mere 130,000 to provide the physical infrastructure for a proper immunology service. Another 1.4m a year would pay for nursing staff and two immunologists, as, they argue, the era when one consultant would have sufficed is long gone.

"To me, it's so obvious I can't understand why it hasn't happened, " says Dr Karina Butler, head of the national centre for paediatric infectious diseases and immunology at Our Lady's Hospital for Sick Children, Crumlin. The centre is housed in the hospital's six-storey Medical Tower which was officially opened by health minister Mary Harney in 2005 after being built at a cost of 14m with 100% voluntary contributions.

Ad-hoc arrangement In November 1994, three years after Comhairle na nOspideal's recommendation, the Department of Health wrote to Our Lady's Hospital in Crumlin confirming the decision in principle to appoint an immunologist, pending financial clearance. In April 1999, a "temporary" service was initiated when Butler, an infectious diseases consultant, asked a colleague, Prof Andrew Cant of Newcastle General Hospital in England, to come and see some children she was worried about in Dublin. Ever since, that ad hoc arrangement has been in place. Cant travels to Ireland every six or seven months to see children suffering from immuno-deficiency, flying into Dublin on Thursday morning and back to Newcastle on Friday evening after near-continuous clinics.

"We have families going over to Newcastle. Their medical services are funded under the EU but they're not entitled to funding to get to those services because it's means-tested for flights over to the clinic, " says Butler. "We have one family with three sick children. They had a clinic appointment that was changed at short notice and it cost them 900 to change their flights and the father had taken unpaid time off work to look after the two sick children who were still at home. Another family in the same circumstances ended up relocating to Newcastle altogether because it was the only way they could cope. Parents ring me and there's nothing I can do about it."

Ross Colgan was five months old when he was diagnosed with an immune condition known as SCID (Severe Combined Immuno-deficiency), which means he was born with no T-cells to fight infections.

Had he not been diagnosed, he would have died before his first birthday. The diagnosis was made in Crumlin and, due to the urgency of his condition, he was flown in an Air Corps jet from Baldonnel to Newcastle.

'It's quite embarrassing' "His immune system was so low they couldn't risk taking him through an airport in case he would be infected, " says Ross's mother, Mary Colgan from Lucan, Dublin.

"We'd never even realised that he would have to go to the UK for treatment."

In Newcastle General Hospital, Ross was put in "a bubble", an isolation unit with constantly filtered air, while the search began for a bone-marrow match. One was found in Belgium and the transplant was performed on 3 August 2006. He returned home to Dublin on 4 February last and has been attending regular clinics in Manchester since then.

"It would have been an awful lot easier if it had been in Ireland, " says Mary Colgan. "Our credit cards still aren't paid off. We're still struggling. The family was totally split up.

Ross was there for eight months and two days. We have an older son who was still in Dublin and my husband had to be here during the week for work. We used to rotate.

He would go over to Manchester at weekends and I would come home to our other son. Then I'd be in Manchester with Ross during the week. We were given accommodation in a halfway house by the NHS and we brought our older son over towards the end to get used to us being a family again."

"It's a disgrace that there's no immunologist employed in Ireland to care for children. It's just not right that the NHS looks after the Irish in England. It's quite embarrassing. I remember one of the consultants saying to me, 'Mary, make sure Ross knows he was looked after in an English hospital.' This week, Ross had an appointment in Manchester and it meant getting him out of bed at four o'clock in the morning to catch a flight. The HSE has to realise that immunology cases have doubled in Ireland in the last five years."

Adam Costello-Doherty is 12 years old and has been diagnosed with primary immuno-deficiency and PANDAS, an auto-immune illness caused by exposure to strep throat. He travels from his home in Dublin to Great Ormond Street Children's Hospital in London every three weeks for infusions of a drug called Octagam, which is not licensed in Ireland. He also regularly attends the University of Medicine & Dentistry of New Jersey in the US. His mother, Judi Costello, believes it is "absolutely scandalous" that the immunology and infectious diseases services in Crumlin Hospital are hosted in the same building. Children with hepatitis, TB and HIV are treated there, though the clinics are held on separate days.

"There aren't even automatic doors in the building. A few years ago, I found myself with Adam sitting beside a child with TB. If somebody with TB touches the door handle, that virus is alive for 72 hours. I've complained continuously but I feel it's fallen on deaf ears. I've asked to be included, as a parent, in the consultative process for the new children's hospital."

Dr Karina Butler argues, however, that the medical disciplines of immunology and infectious diseases are mutually complementary and that they naturally overlap. "Even in an ideal world, I wouldn't separate them, " she says.

"You'd find in many hospitals, including America where I trained, that they are accommodated in the same building."

What worries her is that immunology is treated as the Cinderella of the paediatric service and that children are being required to follow restricted diets and take antibiotics while endlessly waiting to be diagnosed. On a tour of the centre in Our Lady's Hospital, she opens the door of one room and says: "This is where babies with RSV infection [a highly contagious lung infection] are given a lifesaving drug called Palivizumab. The nursing staff here are paid for by the drug company [Abbott Laboratories]. It shouldn't be done that way. I have issues about it but, if we don't do it, we don't have the service."

Joan and Gerry Coyne from Sutton, Dublin believe they owe their son's life to the doctors and nurses of both Our Lady's and Newcastle hospitals. Tim Coyne, now aged eight, was diagnosed with chronic granulonatous disorder when he was four.

'Very, very angry' "We were told he needed to go under the care of a paediatric immunologist but that there wasn't one in the country, " Joan Coyne recalls. "He was put under Prof Cant's care, along with Dr Karina Butler. The two of them are constantly in contact. Twice a year, Tim would be seen by Prof Cant, and twice a year by Dr Butler. He was put on antibiotic and antifungal therapy to keep him well but the only cure for his condition was a bone-marrow transplant. This had to be done in the UK.

"He went to Newcastle in August 2006 and he had the transplant on 13 April this year. He finally came home on 4 July and he's doing very well. Coming home was like cutting an umbilical cord because we were so well looked after in Newcastle. Initially, I felt very, very angry that Tim had to go to Newcastle. This was the height of the Celtic Tiger and Ireland was flush with money, but we couldn't afford an immunologist for the children.

Prof Cant is fantastic and his team over there are fabulous but if they were in Crumlin, it would have been so much easier.

"Our daughter, Tess, could not come to Newcastle with us because she was not allowed to visit Tim.

My husband and I rotated between Dublin and Newcastle every five days, but we would overlap one night a week and Tess would have to be farmed out. Aer Lingus and Ryanair both fly to Newcastle every day so it was accessible but I don't think we'd have a lot of change out of 10 grand from the flights. Remember, you're dealing with sterling too when you're there, paying for taxis and food.

"Several times I was on the plane waiting for take-off in Newcastle to come home to Tess in Dublin and there would be tears streaming down my face. I wanted to go home to my daughter but I also wanted to stay there with my son.

"You can feel very angry about the fact that there is no immunologist in Ireland. It really is ridiculous in this day and age. I fear that there will be children who won't be diagnosed because there isn't an immunologist. A lot of children are being treated for infections by GPs and there is nobody to refer them to. When Tim was diagnosed four years ago, we were told he was one in a million with the condition and that there were six in Ireland. Now, the rate is one in 200,000. Crumlin is terrific and the liaison nurse, Samantha O'Connell, is brilliant. It's a disgrace that they still haven't been given the immunologist they've been looking for all these years."