Wednesday 26 July 2017

Broadcaster Jonathan Healy: Our baby girl was put at risk by mystery of the missing fax

A new baby turns life upside down - but when a hospital form went astray, Jonathan Healy's new daughter Aoife found herself fixing a broken system

THE TREMENDOUS TWOS: Aoife Healy with her parents Colette and Jonathan. Photo: Michael McSweeney
THE TREMENDOUS TWOS: Aoife Healy with her parents Colette and Jonathan. Photo: Michael McSweeney

The news came as a bolt out of the blue. Our little seven-month-old daughter Aoife was, as far as we were concerned, perfect. What was expected to have been a routine X-ray had ended with a diagnosis of hip dysplasia - which meant that she would have to undergo a procedure under anaesthetic and wear a cast on her lower body for at least 12 weeks.

Aoife was going to be fine in time, but the next few months when she should have been taking her first steps were instead going to be lived in a plaster-cast with a little gap for a nappy.

There was frantic reading of photocopied leaflets, a little ill-advised Googling and a few self-indulgent tears. Her condition meant that both of her hips were under-developed, and failure to act immediately would have resulted in more serious problems later in life. My wife Colette and I put our little girl in a tiny gown and into the steady hands of the surgical team.

Aoife's journey began two days after she was born. The care both she and Colette received in the maternity hospital was excellent, albeit a little frantic at times because of the workload on the staff. Like all newborns, she underwent a basic paediatric check which showed nothing untoward.

The diligent doctor asked whether there was a history of any problems with hips, and we offered that one of our boys had a minor problem that had fixed itself. Aoife was to be sent for a routine X-ray, we were told not to worry and were handed a yellow copy of the referral form. It was put into a bag, and we prepared to bring our daughter home.

Then life took over. A new baby turns your life and your house upside down. We forgot about the form and the referral amid the clouds generated by nappies and sterilising bottles. The other boys were getting used to having a new distraction in the house. Having opted to go public rather than private, we assumed there was a waiting list and that at some stage, we'd get a call.

Further routine medical checks were carried out, but Aoife's condition did not manifest itself in a way that was identifiable from a physical exam. In the end, it was the public health nurse asking whether any issues were outstanding that prompted Colette to mention the yellow form. Heads were scratched. No, there had never been a call to bring her in. Yes, they definitely wanted to refer her. The advice was simple: "Sure, give them a ring."

So we rang the specialist orthopaedic hospital, and it turned out they had never heard of us. We scanned our copy of the yellow form at home, sent it by email, and Aoife was called for assessment within a few weeks. The delayed X-ray showed that one hip was dislocated and the other was seriously underdeveloped.

Only after the first procedure on our 11-month-old daughter did we pause to ask how something like this could have gone astray. And more importantly, had it happened to someone else?

Anyone who has ever listened to my radio programmes over the years would know that I am no shrinking violet - yet in the face of something personal like this, I hesitated.

If we made a fuss, would it affect our daughter's treatment? What would be gained by complaining about a lost referral?

In the end, we decided that we needed to know what happened, so one morning I rang a number in the HSE and we went down the rabbit hole.

After a number of false starts, we eventually got a response in writing, and found out that an Irish hospital in the second decade of the 21st century had sought to refer our daughter to another hospital by fax. They even enclosed something which neither of us had seen for years - a fax confirmation note.

We were floored. In front of us was an immobile baby in a cast. Who uses fax any more? Does anyone even use a fax machine any more? Had they not heard of email? If the X-ray had been taken when it was supposed to, would she have needed such an invasive treatment?

We were angry, and the system wasn't helping. The convoluted nature of the appeal process allows for a period of 28 days to appeal, but by this stage the hospital had passed the investigation to the other hospital, who would not respond for another 28 days, by which time the original appeal window would have closed. In the end, that other hospital said that they had never received the fax.

So who was right? And did this happen to anyone else? We made the decision to enlist the help of the Ombudsman for Children.

The effect was fascinating. The Ombudsman took the basic details, all of our correspondence, spoke to us by telephone and set about undertaking a "preliminary investigation". There followed a flurry of official correspondence to compile the evidence about what happened, with an investigative precision and a zeal that we as parents could only have dreamed of.

What they found was a systematic failure of the referral pathway between the two hospitals. Their review of 2,077 cases over a 16-month period found a total of 20 patients whose faxed referrals had been lost.

We never found out whether the others faced similar issues, but Aoife was unlucky. The delay in her referral for the X-ray "resulted in the failure to diagnose, in a timely way, her condition which then required urgent treatment before she began to walk".

The hospitals were involved in a series of summits that culminated in both of us attending a meeting of senior staff. Apologies were accepted. New patient pathways were explained. Thanks were offered for having highlighted the issue.

We sat before a total of 16 or so people, advocating on behalf of a two-year-old who was at home watching Peppa Pig and oblivious to the fight she had started.

The Ombudsman told us that the matter had been raised nationally with the HSE, and I was to later find out that a directive was to be issued banning further use of inter-hospital fax referrals.

What we had found most frustrating was that anyone stepping back from the process would have seen the risk of using such outdated technology. For us, the episode exposed a massive IT shortfall within our hospital network, where two major hospitals couldn't communicate electronically.

Had we not complained, that fax machine would still be in use. Instead, it was consigned to the dustbin where it belonged. The faultless medical treatment that Aoife received means her prognosis is excellent (she hasn't stopped running since she took to her feet).

Thanks to the Ombudsman, and the good people we met along the way within the HSE, a little girl made a big change in our broken system. Here's hoping others won't be afraid to find their voice.

Sunday Independent

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