The potentially life-saving rule parents of very sick kids should know

Posted in Family Health.

A little boy who sadly died when his condition was not taken seriously enough by hospital staff has since saved other Queensland children’s lives, after a protocol allowing parents to invoke an independent second opinion was established in his memory. Thankfully other states seem to be following suit.

In memory of Ryan

In 2007 Ryan Saunders died in hospital, just short of his 3rd birthday.

The little boy died from toxic shock, after being sent home with an incorrect diagnosis of mumps and advice to administer Panadol.

Ryan’s unnecessary death sparked a review of procedures in Queensland health services, and a number of reforms to ensure patients were better cared for.

The Ryan’s Rule protocol was also developed, in Ryan’s memory, to provide Queensland patients, families and carers with a simple, powerful way to access a second opinion and escalate their care or that of a family member.

The treatment we need

Queensland mum Lili Curtis invoked Ryan’s Rule when her daughter Arabella became ill.

The family were sent away from hospital 8 times in 17 days, and Arabella wasn’t getting any better. It was only when a friend told Lili about Ryan’s Rule that she asked to invoke the protocol.

It was the right decision. Lili says the head of paediatrics swiftly attended and Arabella finally got the treatment she required, and ultimately got better.

Lili says Ryan’s Rule gave her a voice and allowed her to help her daughter when she was feeling otherwise powerless.

A rule for everyone

This life-saving rule is not just for kids.

Rockhampton mum Amelia Herring invoked Ryan’s Rule when she had complications with her second pregnancy.

Amelia had taken herself off to hospital, almost unable to walk and was diagnosed with pre-eclampsia. Four days on – and still in hospital – she felt her condition deteriorating and it seemed hospital staff weren’t treating her with any urgency.

Her call to Ryan’s Rule prompted a swift admission to intensive care and more appropriate treatment.

“I ended up in intensive care for two days on magnesium infusion to stop seizures,” Amelia told The Morning Bulletin.

“I lost 15kgs of fluid in those two days. All my organs were being affected by the condition.”

Respond and review

Ryan’s Rule was invoked 654 times last year by desperate Queensland families whose loved ones were just not getting better.

In every case, an urgent review was quickly undertaken by a dedicated Ryan’s Rule team.

While in 75 percent of cases no change was made to treatment, 163 cases did require further intervention.

There is no doubt that Ryan’s Rule has saved lives.

“I’d like to invoke Ryan’s Rule”

So how do Queenslanders invoke Ryan’s Rule?

Firstly talk to your nurse or doctor about your child’s care and voice your concerns. If you’re still unsatisfied, talk to the nurse in charge.

If you’re still unhappy and worried about your child’s condition –

  1. Call 13 Health (13 432 584)
  2. Ask to invoke Ryan’s Rule and request a Ryan’s Rule clinical review – you’ll need to provide your child’s name, the hospital name, your child’s ward and bed number and your contact details.
  3. The Ryan’s Rule team will then initiate your child’s review

What about other states?

Similar escalation systems are also available in some other states.

New South Wales has the REACH communication process (Recognise, Engage, Act, Call, Help is on its way) which aims to make it much easier for worried parents to escalate their child’s care and ensure the best possible outcomes. If you’re in New South Wales, ask the medical staff how you can access REACH, or visit the Clinical Excellence Commission.

Canberra Hospital has the Call And Respond Early program (CARE) to help facilitate better communication and assess treatment escalation.

Hopefully other states and territories will make it easier for parents and carers to respectfully access a second opinion under stressful circumstances too.

If you’re unsure of the escalation process at your hospital, get in touch with their Patient Liaison Officer and don’t be shy about respectfully airing your concerns and pushing for a review.

It could be a life-saver.



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