Macarthur parents Lara Neilsen, Alexis Nooyen share experiences of travelling to Westmead for treatment

For parents, one of the worst experiences is to have a severely ill child. Making things worse is being forced to travel for vital paediatric services, an experience all too common for those in Sydney’s southwest.

When a child is severely unwell or suffering from a lifelong condition, the last thing many parents would want to do is drive at least an hour anytime they need treatment.

But for some parents in the Macarthur region, that is their reality.

Despite an upper house inquiry in 2020 recommending more paediatric surgery and specialist services be explored for Campbelltown Hospital, it has not come to fruition, meaning ill children need to travel to Randwick or Westmead for care.

And, with the region tipped to see a 27 per cent population boom in the next decade, the region’s Labor politicians have called for the government to act now.

Lara Neilsen with her son Lachie.

For numerous families across the region who are forced to travel for vital health services, the strain is almost impossible to bear.

Lara Neilsen said she would never forget when she got a voicemail from the team at Westmead Hospital saying the results had come back from a routine test.

“I was at Oran Park Woolworths and I rang them straight back,” she said.

“The nurse said ‘maybe go home and make yourself a cup of tea and then call’, but I said ‘no, no you need to tell me now’.

“So that’s how I found out Lachie had cystic fibrosis. He was just four weeks old.”

Within two days, the family were at The Children’s Hospital at Westmead after being told their only options was Westmead or Randwick for treatment.

Ms Neilsen works at Westmead and described having to make the trip for both work and personal reasons as “tough”.

The hardest time was during the start of Covid, when Lachie was about 18 months old and was admitted for an infection known as RSV.

When Ms Neilsen took her son to hospital, she had no idea they would be there for 20 days, a time made even more stressful by Covid regulations and not having a local network of family and friends to provide support.

“The challenge with that was, they were super strict with visitors. No other parent was allowed in, you weren‘t even allowed to do changeovers,” she said.

“My partner Brendan then drove all the way to Westmead multiple times and had to leave our bag at reception and I had to get a nurse to sit with Lachlan so I could go get our stuff.

“Brendan would go to work as a truck driver, come home get what we needed, take it back to the hospital and then come home and get a few hours sleep.”

The trip to Westmead can take anywhere between 50 minutes to more than an hour, depending on the time of day.

Managing the travel, along with Lachie’s health and also raising two other children has proved challenging, Ms Neilsen said.

“Lachlan’s clinic is at 10am on a Wednesday and at the moment, we do that every six weeks but when he was a baby we had to do it once a month,” she said.

“I have to do school drop-off and then take Lachlan to clinic. But, we have to go for other things like his lung function tests.”

In December, Lachie had pseudomonas, and at the end of his treatment, he needed to have a follow-up test.

“His follow-up didn’t happen until four weeks after it should have due to a few reasons but mainly because of the distance and the complexities of getting to Westmead,” Ms Neilsen said.

“Having even just some of the health services here would make things so much easier, especially considering we have so many young families here.

“Of course we take Lachie to Westmead, but the reality is we have no option. Even if he is slightly unwell we cannot take him to Campbelltown we have to go straight to Westmead.”

Ms Neilsen said the staff at Westmead were fantastic, but the journey to the hospital can add a significant amount of stress.

It’s a sentiment echoed by mum Alexis Nooyen whose seven-year-old son Kaiden has to go to Westmead Hospital every four weeks for a day of transfusions.

“My son is part of a clinical research at The Children’s Hospital at Westmead because he has a complex neurodevelopmental disorder and autoinflammatory condition,” she said.

“He receives IVIG infusions every four weeks as part of his treatment plan.

“His care team is amazing and I would never want to change specialists, however it would be great if some kind of system could be set up where the infusions could be done at Campbelltown with communication between the two hospitals.”

Kaiden Nooyen at Westmead for his monthly transfusions. Picture: Supplied

Ms Nooyen said the day of transfusions goes from 8am to 6pm, and she needed to allow two hours for travel each way as it is right on peak hour.

“I have one other daughter and both my children are autistic so the travel makes it extra hard,” she said.

“Some people might think the trip every four weeks isn’t that much, but a month goes past very quickly and it makes for a very long day with a kid.”

The South Western Sydney Local Health District was contacted for comment, but provided no response.