Lack of paediatric services ‘failing’ Canberra families

Canberra children are enduring lengthy wait times, as well as disruptive and expensive trips interstate, due to a shortage of paediatric specialists and surgeons in the capital.

Danielle Leonard and daughter Kyla, who was urgently flown to Westmead while on a wait list for a Canberra clinic. Picture: Tracey Nearmy

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Canberra families have spoken out about a lack of paediatric services in the capital with children routinely facing lengthy wait times and disruptive journeys interstate to receive treatment.

The Canberra Star interviewed more than a dozen parents who say there is a shortage of specialists across the board from cardiology to ophthalmology to orthopaedics.

Canberra Health Services says it is working hard to strike the balance between catering for local families and ensuring there is enough demand so paediatricians have the necessary skills and experience to provide safe treatment.

A full-time paediatric gastroenterologist/general paediatrician was recently appointed and will start work later this year, while another surgical specialist will be considered as part of the flagship SPIRE Centre project.

Danielle Leonard’s baby daughter, Kyla, was recently flown to The Children’s Hospital in Westmead after her heart rate dropped dangerously low.

Queanbeyan mum Lisa Dunphy has experienced the full gamut of paediatric treatment gaps with her daughter Sienna who was born premature and so faces multiple health issues.

Canberra Health Services has three visiting paediatric cardiologists who hold outpatient clinics two or three days each month.

Ms Leonard ended up making an appointment to see one of those specialists privately in Sydney after being told the clinic was full.

As they waited, Kyla’s condition deteriorated from a partial to a full heart-block and she ended up being flown urgently to Westmead where she had a pacemaker installed.

“Her heart rate got as low as 40 the night before she had her surgery and she was only 15 weeks old at the time,” Ms Leonard said.

“It was quite scary knowing there was no cardiologist team in Canberra should our daughter’s condition deteriorate quickly.

“It’s mind boggling that we are supposed to be the capital of Australia and there is no cardiologist on staff at all.”

Queanbeyan mum Lisa Dunphy has experienced the full gamut of paediatric treatment gaps with her daughter Sienna who has battled multiple health issues after being born premature.

Sienna, 3, waited more than a year just for an initial consultation with an Ear, Nose and Throat surgeon to get her tonsils and adenoids removed and grommets inserted bilaterally.

Little Ruby had to travel to Sydney to see a specialist for her hip dysplasia.

Tegan Kerr with her beautiful daughter Ruby.

“Just to get the appointment I had to write to my federal member and cause a scene with ACT Health,” Ms Dunphy said.

Sienna only just got an appointment with a cardiologist for late August, a year after receiving the original referral in September after doctors became concerned about a systolic heart murmur they picked up during her ENT surgery.

The family spend a fortune travelling to Sydney to receive consistent medical treatment for her eyes.

Two paediatric ophthalmologists travel to the ACT to provide two full day outpatient clinics for about 40 patients a month.

“For a major hospital that looks after such a large region of Canberra and NSW, Canberra Hospital is really failing our children,” Ms Dunphy said.

“At the end of the day, it costs me a hell of a lot to get basic medical care for my daughter.”

Latest data from My Hospitals shows median wait times for paediatric elective surgery increased 76 per cent from 42 days in 2016-2017 to 74 days in 2017-2018.

The number of patients waiting longer than 365 days for elective surgery has increased from 0.2 per cent to 1.8 per cent in 2017-2018 — more than four times higher than the national average — according to an Australian Institute of Health and Welfare report.

Queanbeyan mum Lisa Dunphy said the health system is failing Canberra children.

Several parents raised concerns about there being no paediatric orthopaedic surgeons in the capital, including Tegan Kerr whose daughter Ruby had hip dysplasia.

“We had to travel to Sydney to see a specialist and I know many other people who have had to do the same,” Ms Kerr said.

“Hip dysplasia is actually quite common and the fact babies can’t be treated properly in Canberra is shocking in my opinion.”

Another parent told The Star their daughter also has the condition and either had to wait up to six months for an appointment at Westmead or pay to see a private specialist, either in Bowral or Sydney.

She was also concerned there were no paediatric rheumatologists, neurologists or orthopaedic surgeons after an MRI found a lesion in her son’s hip.

“After 12 months and nine trips to Sydney we are no closer to finding out what caused his pain and the gait issues,” she said.

“We’ve been on a wait list for nine months to see a rheumatologist at Sydney Northshore.

“It is frustrating that the nation’s capital has so little support for kids and families.

Danielle Leonard and her daughter Kyla. Picture: Tracey Nearmy

“The waiting and travelling is the last thing families need when faced with a scary and uncertain future.”

Another mum said they had also travelled to Westmead several times in the last year after being told her son William would have to wait seven months to see a private ophthalmologist.

Parents were better off travelling to Sydney rather than facing the long wait list to get into the monthly clinic in Canberra, she said.

Shadow ACT Health Minister Vicki Dunne suggested the Government look at increasing the frequency of specialist clinics to clear backlogs and also streamlining the transfer of patient care to Westmead.

Improvements were required to the ACT Interstate Patient Travel Assistance Scheme which Ms Dunne described as “horrendous and ridiculously bureaucratic”.

“The money is there but families have to go through all sorts of hoops to access it,” Ms Dunne said.

“We probably need more paediatric surgeons but we also need more operating time.”

There are four paediatric surgeons employed by Canberra Health Services with two of them specialising in paediatric general surgery, one in urology and one in paediatric ano-rectal and gastrointestinal surgery.

A CHS spokeswoman said a recently appointed full time paediatric gastroenterologist/general paediatrician will start work later this year.

“An additional surgical specialist will be considered as part of the Surgical Procedures, Interventional Radiology and Emergency (SPIRE) Centre project,” she said.

“In disciplines where the ACT sees patient volumes that are too small, it is safer for patients to be referred to specialist centres interstate where specialists have the necessary skills and experience to treat these patients.”

CHS has recently appointed a full-time paediatric gastroenterologist and employs a 0.4 FTE paediatric gastroenterologist at the Canberra Hospital.

There are monthly outpatient clinics for paediatric rheumatology, epilepsy and neurology.

Health Minister Rachel Stephen-Smith said a key focus of the children’s health services plan was on how to grow specialist paediatric services in the ACT.

“This includes how we can better support families to co-ordinate and access the health services they need in Canberra while also receiving specialist care interstate,” she said.

“Throughout the process of developing the plan, we will be working with families and children who are, or have needed to, access health services interstate.

“This will help us to better understand the experiences of children and families as we continue work to strengthen the health services available in Canberra.”