BRIDGING THE GAP: Shannon’s Bridge directors Dr Claire Hepper and Jeremy McKnight visited Mildura this week to meet with local health professionals, and spread the Shannon’s Bridge story. Shannon’s Bridge aims to connect patients, existing palliative care services and support services, and was founded in honour of Jeremy’s daughter Shannon, who passed away at age 19 after a two-year battle with leukaemia.
By VINNIE RODI
IMPROVING palliative care services across Australia, while also making it easier for people to receive care in the comfort of their own home, has been the driving force for those behind the Shannon’s Bridge initiative.
It’s a mission that has seen Shannon’s Bridge directors visit Mildura this week to learn from the region’s health professionals, and spread the Shannon’s Bridge story.
Shannon’s Bridge is a not-for-profit volunteer organisation which aims to connect patients, existing palliative care services and support services. It was founded by Jeremy and Belinda McKnight, Dr Claire Hepper and Dr Allison O’Neill, in honour of Jeremy and Belinda’s daughter Shannon, who passed away at age 19 after a two-year battle with leukaemia.
Shannon’s dying wish was to make palliative care access easier for those, like herself, who call rural areas home, especially areas where after-hours services are stretched thin or non-existent.
“Shannon was diagnosed with leukaemia two-and-a half years ago at age 17, and the type of cancer she had meant she had to go into quite intensive treatment,” Jeremy said. “She went to Prince of Wales Hospital in Sydney, which at the time was the only place offering the trial treatment she was receiving.”
Shannon remained at Prince of Wales for an entire year, and in that time underwent a bone marrow transplant, with Jeremy acting as the donor.
“Unfortunately the leukaemia was too strong and came back,” Jeremy said.
Shannon was soon moved to Royal Melbourne Hospital, where she spent another year undergoing treatment, including cutting edge initiatives sourced from Europe and a second bone marrow transplant.
After two years in hospital, the McKnight family was told that Shannon’s treatment options had run out.
“With Shannon being in hospital for so long she had simply had enough, and wanted to go home,” Jeremy said. “We knew Shannon was going to die, we just didn’t know how long we had left.
“We stopped treatment at 2pm one afternoon, and Shannon was home by 4pm, and it was a big transition to go from hoping treatments would work to not knowing how long she had.
“People don’t have an understanding, unless they’ve physically been through it themselves, of how hard it is to be in hospital for that long. You miss the basic things – your bed, going to the toilet by yourself, not having tubes and all manner of things attached to you 24/7.”
t wasn’t until Jeremy and Belinda got Shannon back to their Mount Glasgow home that they realised dedicated palliative care coverage wasn’t available.
“Mount Glasgow is a rural area about 45 minutes from Ballarat,” Jeremy said. “We quickly realised that we sat between three palliative care coverage areas.
“One of them kindly came out and left some equipment with us, while also letting us know that we would struggle to have support after hours and on weekends.”
Fortunately for the McKnights, they were given the contact details of Creswick-based doctor Claire Hepper.
“Claire came out and helped Shannon, and sat with us for hours and spoke about how she could help,” Jeremy said. “Claire brought Dr Allison O’Neill with her, and they brought the forerunner to the ‘Shannon’s Pack’ – which is an emergency symptom relief pack.”
With Dr O’Neill and Dr Hepper’s guidance and help, Shannon was allowed to die at home surrounded by loved ones four days after leaving hospital.
“After Shannon passed away, Belinda and I met with Claire to see what we could do to help,” Jeremy said.
The result was the creation of ‘Shannon’s Packs’ – a kit with the medicines, tools and information sheets needed to allow people to not only die at home in relative comfort, but also to have access to care at home during hours when dedicated palliative care is unavailable.
“The packs include emergency symptom control, and is not designed to replace palliative care, but help those providing that 24-hour care get someone through to the next working day when palliative care services are on call,” Dr Hepper said.
“Unfortunately there’s not too many regions in Victoria that have 24-hour palliative care, so if we can help the wonderful palliative care services operating across the State, and help bridge the gap, then we take some of the pressure off those services.
“I only got to know Shannon very briefly, and it became clear to me that my usual doctor bag approach for general emergencies was not going to meet Shannon’s needs… I thought there had to be a better way to do this.
“There are similar packs out there that are handed out by health services as emergency packs, but I wasn’t aware of any that came from a GP.
“The litmus test was to look at who is going to be providing that 24-hour care, who will get the call at 3am, and ensuring that they have the tools they need to keep someone in their desired place of care, whether that be home, aged care, a regional hospital etc.”
Dr Hepper said Shannon’s story had quickly galvanised the community, with donations made to put together 30 Shannon’s Packs, which were distributed across the State.
“We received some good feedback about the packs, while also learning that we needed to look at supporting extra volunteers, while also caring for the carers to make home-based palliative care a success,” she said.
Shannon’s Packs have since found their way to Queensland and Tasmania, with Shannon’s Bridge also training volunteers in the use of the packs. Training is made available thanks to the support of the Lions Club of Australia and other community groups.
“We have also hosted information/education sessions across Victoria about the initiative, and it’s something that we hope to do in Mildura in the future,” Jeremy explained. “Our visit this week has been to learn and see what Mildura’s palliative care services are doing.
“It’s not about reinventing the wheel, but potentially adopting procedures that are already taking place, while offering our own experiences and advice in return.”