Kelly Foran's quest to help patients from rural and remote areas navigate the complex health systems.
Kelly Foran knows first-hand how challenging it can be for people from rural and remote areas to navigate the health system in a big city during times of crisis.
At eight months pregnant with her first child, Kelly, who lived with her husband Dave on a farm at Maules Creek, outside Narrabri, in the state’s north-west, became seriously ill on Boxing Day 2002.
At Dubbo Base Hospital, she was diagnosed with a massive brain tumour and within the hour she was airlifted to RPA Hospital to have an emergency caesarean section.
Dave is originally from Bourke, in far-west NSW, and had never been to a major city, let alone somewhere as big as Sydney. Because they were urgently transported to Sydney by air ambulance, Dave had nothing more than the clothes he was wearing. No phone, no wallet, no friends or family in Sydney and nowhere to stay.
Kelly spoke about her experience at the Patient and Family Experience Symposium on June 19 at the Centre for Education and Workforce Development, Rozelle.
Two weeks following their arrival in Sydney, son Jake was born at a record 12 and a half pounds, with a hole in his lung and hyper insulin anaemia. The condition is so rare special medication had to be flown in from the US and Jake spent three weeks in neonatal intensive care.
“Many occasions we struggled to get food, supermarket goods, nappies, milk and parking,” Kelly said.
“We’d left the farm, animals, property and it was pretty darn tough.”
Following massive doses of steroids to shrink the tumour, Kelly had a 16-hour operation two months later. She spent three weeks in intensive care. Unfortunately, the treatments resulted in a stroke, insulin-dependent diabetes and muscular dystrophy and Kelly was unable to walk, talk or care for herself or Jake for several months. A second stint in RPA for meningitis on the brain followed, including a six-hour operation and four week stay in hospital. This time, Kelly was in Sydney alone as Dave stayed home with Jake.
“He didn’t take Jake because he couldn’t find somewhere to bath a baby, he couldn’t find somewhere to take the baby if he got upset, it wasn’t accepted to have a baby on the neurology ward,” she said.
“At no stage did a nurse say, there’s a TV room just down the hall, why don’t you use that.”
As Jake’s first birthday approached, Kelly took him to seen an optometrist after noticing a change in his right eye. The family was referred to a children’s hospital in Brisbane in three days’ time. Another unfamiliar city, another health system and again, no family or friends to help.
Jake was diagnosed with cancer and had to have one eye removed to get rid of the tumour and prevent it spreading to his brain. The surgery was successful however Kelly felt enormous grief at her child losing an eye.
“We now had a whole new diagnosis to deal with. We had a whole new city, a whole new hospital. When it was me it wasn’t so bad, it was my problem, but when it was my son, it was really tough to deal with and cope.”
“The journey is tough enough but then you also have to deal with the underlying stresses of finances and leaving jobs for periods of time,” she says.
The couple faced continuing medical and financial challenges, including a bout of depression affecting Dave. Kelly was told the treatment for her cancer meant she couldn't have more children. But just weeks after Jake’s surgery she discovered she was pregnant. This time, she had a healthy baby girl.
“Miracles do happen,” she said.
In 2011 Kelly created Friendly Faces, Helping Hands, a charity that assists rural and remote families to access health services and provides support to families in hospital. She has helped thousands of people navigate the complex health system and the big smoke.
“After our traumatic time I felt I was given an understanding of and insight into the difficulties people from all areas, but predominately rural and remote areas, face every day when trying to navigate hospitals and health facilities,” she said.
The foundation helps people find accommodation and transport, organises volunteers to pick people up from hospital, airports and train stations and take them to appointments and negotiates on behalf of patients with airlines for cheaper flights.
It aims to minimise the overwhelming feelings of isolation and give people the power of information in difficult times, she said.
“From our traumatic time we learnt how hard it is but we also learnt it doesn’t have to be so hard; if someone had given us the information we needed when we needed it, then we wouldn’t have had to go through the trauma and the struggle.
“We’ve been through seven hospitals, two states and three health systems so we certainly know the problems and the pitfalls and we know the ways to help.”
In 2016 Kelly, who now lives in Glenn Innes on the Northern Tablelands, was a finalist in the regional category for NSW Woman of the Year.
“I’m not standing here saying I can fix it all, but what I am saying is we can lighten the load,” she said.
The Patient and Family Experience Symposium was held as part of Sydney Local Health District’s Innovation Week 2018.
Chief Executive Dr Teresa Anderson said it was important way to begin Innovation Week, because the experience of patients, their families and friends is at the centre of the District’s commitment to excellence in health and healthcare.
"We’re action people. We can make significant change. We are moving in the right direction and days like today help us to do it,” Dr Anderson said.
To see a highlights video of the symposium, click here