Join in to make Elsie's palliative care dream a reality
IT'S AS simple as signing your name.
That's the next step in the fight to get a purpose-built palliative care facility, or hospice, for the people of the Central Coast.
It's a fight that began almost five years ago, with the death of 51-year-old Elsie Green in a nursing home, who told her friend, Oana McBride, in tears, "I'm dying here in hell. Don't let this happen to anyone else".
But despite Oana's best efforts, and those of the Lions Club of Wyoming East Gosford, creating Elsie's dream of a safe and home-like environment for terminally ill patients to spend their final days in peace, with loved ones by their side, remains a challenge.
And while Elsie's Retreat Project chair Margaret Pearce said everyone from doctors, to nurses, and patients to local politicians believes the facility is something the Central Coast urgently needs, it seems the politicians with the purse strings aren't listening.
To make them listen - to get the time in NSW Parliament to put their case in full - the project needs to collect at least 10,000 signatures on a petition.
When Seniors Newspapers spoke to Margaret, about 5000 signatures had already been collected, but the more there are - whether that's 15,000 or 100,000 - the more time Elsie's Retreat Project spokespeople will be given in parliament, and the more hope they have of finally making Elsie's dream and, sadly, that of hundreds of cancer and other terminal patients since, a reality.
Part of the problem in gaining support, Margaret said was the old attitude of "it won't happen to me".
No one wants to consider dying of a terminal disease and, even those who do, picture that either they will die peacefully at home or believe that palliative care already exists.
"But when it comes down to the nitty gritty, unless you have family support - and that means someone not working who is available to care for you full-time - being cared for and dying at home is impossible for many, many people," Margaret said.
Even for those who can stay home with the help of existing in-home palliative care services, their medical needs often go beyond those capabilities, and the in-home care is only funded for business hours, leaving a huge gap in time when you may need specialist help urgently.
The only option then is emergency admission and palliative care in hospital, with all its clinical rules and regulations, tests, and lack of warmth and ready family access.
And when medical care is no longer an option, the terminally ill are moved into a nursing home.
That's not the final days or the final memories anyone wants.
"We all deserve better than that," Margaret said.
While this fight has been taken up by the older generation, Margaret pointed out that Seniors are far from the only ones affected, with the prospect for anyone over 18 of ending their life in a nursing home.
"What we want is for partners or family members and friends to be able to stay with that person overnight, for there to be light, and a home-like comforting environment with the smell of home-cooking and room for the kids to play, and loving, expert staff properly trained in palliative care," Margaret said.
"We want to have a memory path in the garden with the names of those who have stayed, so people have somewhere special where they want to go back to and remember that person."
While regional centres such as Orange and Wagga have standalone facilities, Margaret said because the Central Coast is considered part of North Sydney area health, it's a tough fight to get funding across the Hawkesbury River.
Meanwhile, Sydney's facilities are filled with city residents, even if your family can make the ongoing journeys from the Central Coast.
With an ever-growing population of over 350,000 people on the Central Coast, Margaret said a 10-20 bed purpose-built standalone facility on government land was feasible.
"We have raised a lot of money through the project, but it's impossible to raise the $4-$5 million to buy the land and do the actual building," Margaret said.
"Once we have the building, we have the funds to put in beds, curtains, equipment, TVs, a children's room, and we have the volunteers ready to help out, that's where the community ownership comes in, but we need the government to build it and fund ongoing staffing."
And it makes economic sense, with palliative care in hospital costing $1800 per day, and taking up a valuable hospital bed in the overcrowded system, compared to just $1000 in a purpose-built palliative care setting or hospice.
To add your signature to the petition, go to Elsie's Retreat Project on Facebook, or email Margaret for a copy on firstname.lastname@example.org.
Sharing the Dream
Anna Edgell was among more than 100 people who attended the Elsie's Retreat Project palliative care meeting last month and shared her story as to why Elsie's dream is now hers too.
Diagnosed with aggressive breast cancer in January this year at just 37 years old, the midwife, wife and mother-of-two (Bradley, 17, and Ellie, 6) has been through chemotherapy which was unsuccessful in stopping the disease from metastasising to her liver and pelvis, with no cure possible.
As a midwife, she said, she was used to researching options and supporting families with their choices.
"I am used to respecting peoples' rites around dignity, choice and self-determination," she said.
"As a now-terminally ill patient, I was shocked to find if I wanted my children to be by my side in a calm home-like environment during my passing, this was not going to be an option on the Central Coast.
"The Central Coast has no palliative care facilities.
"The aim of palliative care is holistic care that eases pain and gives quality of life and dignity to the dying.
"I want a facility that can support my wish that my children don't watch their mother suffer in her last days.
"We need a facility that is family-friendly and provides dignity and supportive care to those needing it on the Central Coast."
Having had friends rally to support her and her family, cooking meals, cleaning and raising almost $30,000, Anna said she knew first-hand just how much "Coasties" could achieve.
"Please help me out again by signing our government petition and get this facility built," she said.