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Dublin: 12 °C Thursday 21 February, 2019
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Opinion: I had childhood cancer – I know St James is entirely unsuitable for a children's hospital

I understand what is needed for the promised National Children’s Hospital – St James’s is a laughably poor choice.

Rachel Lavin

THE NEW CHILDREN’S hospital saga has been going on for 21 years now and the promise of a national children’s hospital that combines the specialties of all three current hospitals under one roof is almost as old as I am.

I was one year old when the proposal for a new children’s hospital came. I was 11 when the first planning permission was sought in 2004, the same year I was first diagnosed with cancer. I have had cancer three times since, that’s three different chemotherapies, two stem cell transplants and one total body radiation. I am now 22 and there is still not a brick in the ground.

Our current Government have gone largely unchallenged on this, even in light of the fact that the hospital has been delayed, yet again, until 2019 and still has no planning permission. Why? Because there is no one to speak out for the interests of sick children.

Those children who are sick, cannot articulate their experience, the parents of those children are too caught up in trying to help their children survive, and when both parent and child recover they simply want to move on from this traumatic life event. Meanwhile, parents without ill children don’t even enter the debate, for the thought they might ever need to use these services is too unbearable for any parent. And medical professionals are too afraid to speak out, as they fear they will face ‘punishment’ from the government, in terms of cut funding to their departments or research, such is the political climate we live in

And so without adequate input or defence, the Government has stumbled from one bad decision to the next. First the laughably poor Mater site, and now the equally poor James’s site.

It is in the midst of this stifled debate that I have chosen to speak out. While I don’t enjoy dragging up my personal illness in public, perhaps from my experience I can serve to point out the importance of the most basic needs, such as access, traffic, parking, space, expansion and tri-location, crucial factors which have largely been ignored.

1. Access

From the very first journey we took to receive our diagnoses (I say our because a sick child’s burden is their parents’ and their family’s too) it would take us over three hours to get to Crumlin from our home in Roscommon, a journey we would come to take two or three times a week for my two years of treatment. Yet I got off relatively lightly compared to other patients who would have to drive for 5-8 hours from Donegal or Cork. When I was ill public transport was not an option. I was too weak and couldn’t be exposed to infection. Children suffering from serious long-term illnesses usually come by car, with one parent or more. And 75% of those children are coming from outside Dublin. So why it has to be in a city centre location is nonsensical, especially when one considers traffic.

2. Traffic

Navigating Dublin’s traffic in order to get into Crumlin was daunting to us families travelling up from rural areas and navigating the traffic in order to get into Crumlin. It added huge stress, not to mention delays to our day. A delay of 20 minutes could throw a whole day of essential appointments off, and while that might not seem severe, what about a delay of 20 minutes to a seriously ill child in an ambulance? That could be the difference between life and death.

St James’s is already a highly congested area, with traffic increased because of nearby major concert and sport venues. Now sick children, in the back of their parent’s cars, must compete with the traffic of concert-goers and football games on busy days in order to get to their treatment. This is outrageous. No clue as to how they will solve this huge issue has been offered; mostly because there is no plausible way to do so. And yet traffic and location, which make up the key issue of accessibility in choosing a hospital site, have been brushed aside.

3. Parking

Of course, once we got to the hospital that was only the beginning of our problems. There was always, without fail, trouble getting parking. Sometimes my father would have to wait up to an hour, either sending my mother and I, who he had come to support, ahead, and missing our vital check-ups altogether, or if it was just him and I, we simply had to wait. This is not acceptable.

Parking is a simple but essential prerequisite for those attending the hospital and yet it is being overlooked. St James’s say they’re building a multi-story car park but where? They are already building the hospital on a car park essential to the staff of St James’s Hospital. And having to build five or six stories down into the ground to get around this serious space issue will significantly delay the building of the actual hospital, as well as causing huge construction difficulties. A large above ground adequately sized car park is what is needed.

4. Space

Of course, the problem of the lack of space in the St James’s site, will not just affect parking. It will affect the hospital conditions themselves. When I was in Crumlin the conditions were so bad that at times our health was put at risk by our own surroundings.

There were few isolation wards, the conditions were cramped and over-crowded and ward had to devour itself in order to improve. The whole hospital was crumbling, with dated furnishing and outmoded wards. Porta-cabins were shoehorned into every available space. It was a sprawling mess. With the wards unable to expand and difficult to renovate, the conditions which I endured as a result were deplorable. In the children’s cancer ward there was two beds per room, from babies to teens, with parents sleeping on floors and only a few shared toilets. There was next to no isolation, even though the slightest bug is life threatening to immunosuppressed cancer patients and we were often boarded up in our rooms with bedpans and nothing but sheets separating us because the ward was unable to handle common hospital bugs.

The staff were amazing with what they worked with but the conditions felt like that of a third world country. Wasn’t our sickness suffering enough? The only funding into the ward came from what patients, families and doctors could fundraise in their spare time. We felt so utterly forgotten about in our must vulnerable time. It is something that fills me with sorrow and anger to this day.

And yet, this same dismissal and ignorance of the needs of sick children is being repeated in the selection of the cramped St James’s site, with no space for the services it requires, let alone future expansion. I went to the site myself, a tiny carpark at the back of St James’s hospital (where I now attend) and looked around in disbelief at how, not only, a new children’s hospital would fit there, but how the maternity hospital they promised alongside it, (essential for the emergency transfer of seriously ill babies) along with parents accommodation, enough parking, research facilities, etc would fit too.

How they will fit them there baffles me, but how they will fit them on top of expansion needs is even more nonsensical. Because children’s medicine is continually developing the need for expansion of new services for new treatment, treatments that may not even exist yet, needs to be taken into account. The clinical space in Crumlin increased by 70% in 15 years. Texas Children’s Hospital was rebuilt twice in 20 years. Luckily Texas had the room to do that. This hospital, with a measly 15 acres, will not. This means the hospital will have to devour itself in order to expand, but that comes at the cost of delaying services while long-term renovations occur, time children’s health services can’t afford to wait.

Overall, it is my firm belief that if this hospital goes ahead, it will be the greatest planning failure in the history of the State.

Solution?

Where do I want the site? Well, if it ever gets built, maybe in the time for when I have children of my own, I want a green field site where the hospital can be built from scratch. No multi-story underground car-parks in cramped inner-city spaces.

I want 150-200 acres so that not only can the hospital be built comfortably and with lots of room for expansion but the promised new maternity hospital that is badly needed, can be built alongside it.

And as far as tri-location goes? While adult co-location is important, it is not as important as maternity co-location which would see a direct transfer of patients (95% of transfers are seriously ill babies). Children’s hospital patients are rarely transferred to adult hospitals for emergency treatment so it is not the main priority. All of the one specialties are not under the one roof in Dublin’s adult hospitals anyway. (While James’s does haematology and cardio, Beaumont does brain injuries and Vincent’s does cystic fibrosis, etc.) You can however build near an adult hospital that has room for expansion and in the next 50 years build that up. The site that closest fits this is Connolly hospital, with approximately 150 acres on an M50 site. Can you imagine that? What a dream, A tri-located site with room to develop it into a national level one trauma centre, with the possible medical needs of all ages on site. That’s world class healthcare and it’s all within our grasp.

It’s not more expensive either. A children’s hospital on an open green field site is cheaper than shoe-horning it into a crowded urban site, like they are in St James’s. A new maternity hospital is already promised in the next 15 years anyway. And the Government has spoken before of the need of a national adult hospital that combines all specialties under the one roof. So why can’t we do that? Don’t our sick children, as well as all of our citizens deserve the best, especially when the best is so possible?

If the Government go ahead with the James’ site I believe it will be the greatest planning failure in the history of the State. And who will pay for all these mistakes? Well first of all, namely you, the taxpayer when in 20-30 years we realise our mistake and have to build a new one again. But more so, it will be sick children who will have to put up with long, sometimes life-threatening, waits in traffic. Parents missing from their side due to a lack of parking, cramped wards that are long obsolete because no space to expand into. And to fit this whole hospital, several stories of a concrete mass, with no green space, no fresh air, no place to escape.

This is what the Government is offering in St James’s, a cramped congested site. Of course, this is all if the site even gets through planning permission, which looks highly unlikely as it stands. Those in charge seem to be burying their heads in the sand about that reality, but it is the sick children who will have to wait another five to 10 years once this delay comes to life, that are the ones who will really pay the price. If the Government should be judged by how they treat their most vulnerable then this Government should be judged very poorly.

Rachel Lavin is a youth representative of the New Children’s Hospital Alliance, a group which represents parents, past-patients, medical professionals and other interested persons in fighting for a better site for the New Children’s Hospital.

Opinion: St James’s is the “best site” for the children’s hospital? It’s a complete farce.

Children’s Hospital to be built on St James’s site by end of 2017, early 2018

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Rachel Lavin

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