'There are better facilities in Mountjoy Prison than there are for these children'

In the same room, separated from the mother and son only by a flowery curtain, a teenage boy lies in his bed watching soccer on television.

When her son is finished on the commode, the mother takes the container of faeces past the teenager’s bed out into the corridor and then into the sluice room to be disposed of.

One side-effect of chemotherapy is damage to the lining of the gut, which means some young patients can generate two or three litres of diarrhoea a day. Yet with no single en-suite rooms provided, every day in Crumlin hospital seriously ill patients and their families are forced to “slop out” like inmates of a prison.

Anyone wondering why, with a new national children’s hospital on the way, parts of Crumlin hospital for sick children are being rebuilt has their answer in the grim scenes played out each day in drab and dilapidated St John’s ward.

“There are better facilities in Mountjoy than there are for these children and these children haven’t done anything wrong,” says Aoife Clarke, from Co Wicklow, the mother of a 2½-year-old Alice who was diagnosed with leukaemia last July.

The new children’s hospital is slated to open at St James’s in 2018 at the earliest but thanks to the Fix Crumlin fundraising campaign launched last March, patients and parents won’t have to wait that long for proper facilities.

Surrounded by the cheery Christmas decorations, Clarke can’t say enough good things about the staff who are “incredible, fabulous people, they nurse all of us, not just our children” but she is appalled by the facilities.

At the moment Alice is receiving her scheduled cancer treatment, which means spending several hours a day in the bright, modern day centre adjoining the main ward.

But she has also spent many stressful days and nights using the “outdated and inappropriate” overnight facilities in St John’s where teens and toddlers often share rooms.

“I’ve already been told that if anything is going to end Alice’s life, it’s an infection, and yet children whose immune systems are at rock bottom are sharing rooms,” she says.

“Older children are having to use commodes in shared rooms which, on top of everything else they are going through, is humiliating . . . and there are parents walking around with containers of poo and pee. It’s just not right.”

James Dennedy (11) was diagnosed with leukaemia in August. His mother, Amanda, sits with him in their half of a shared room cluttered with luggage, a fold-up bed, a wheelchair and assorted toys. At what is the most traumatic time of their lives, parents have, until recently, slept on the floor beside their children. They have camp beds now but only because the parents raised money to buy them.

“It’s a dignity issue,” says Amanda Dennedy. “At the moment James is constantly getting sick so the other person in the room is listening to that or him going to the toilet or crying. You don’t have the privacy to talk freely. When the consultant comes in to talk to us, the other people can hear what he is saying. We’ve one toilet between 20 parents on the ward and the shower is broken at the moment, which is not pleasant when you’ve been here for a week.”

James has another three to four years in treatment ahead of him. “There is no point in talking to James about the new children’s hospital. It will come too late for him. He needs the resources now and hopefully the rest of the money will be raised.”

Already cake sales, cycles, quizzes and generous donations have provided €4 million of the €8 million needed to rebuild St John’s cancer ward and St Teresa’s cardiac ward where small babies are cared for in equally unsuitable conditions. In February, phase one of the project will be completed with the second phase due by early summer.

The office of Prof Owen Smith, consultant paediatric haematologist at Crumlin, overlooks the construction site where the new facility is taking shape. He says the project is about “restoring dignity” to the patients and parents who use the cancer and cardiac facilities at the hospital. Over the next five years, while the new children’s hospital is being built at St James’s, about 1,000 children will be diagnosed with cancer at Crumlin and 10,000 admitted to the unit for treatment.

“It’s great that it’s going ahead but we can’t wait five years for the new hospital – these children need to be treated now,” he says. “The facilities are third world and bad third world at that. It’s a failing of our health service, it’s a failing of us as a people.”

In addition to the single en-suite rooms with proper pull-down beds for parents and a play area for children, the new bigger facilities will increase the hospital’s ability to meet the needs nationally for stem cell transplantation and other complex treatments.

“This is a real positive,” says Prof Smith. “Some of these children are still sent away to Manchester and Newcastle for treatment, which is expensive and not ideal for the families.

“We are hoping that when we have the infrastructural resource in place, the HSE will meet us half way in terms of delivering the extra three or four nurses and a transplant physician, which will mean we will be self-sufficient.”

The HSE said it would “discuss and agree service development priorities with the management of the hospital”.

Even with the substandard facilities, outcomes at Crumlin are as good as anywhere in the world. “What is not as good is the experience of patients and their families in terms of the facilities and conditions,” says Prof Smith. “We want to restore dignity to them on their cancer journey. It’s not a pleasant journey but it can be so much better than it is here now.”

To donate to the Fix Crumlin campaign visit fixcrumlin.ieor locall 1890-507508