The community group known as Elsie’s Retreat is dedicated to campaigning for a stand-alone palliative care facility on the Central Coast.
Spokesperson for the organisation, Ms Anne Charlton, said: “Elsie was a registered nurse who died in a nursing home inappropriately, in pain, and her neighbour and good friend realised that it was not OK.
“As a result of Elsie’s death, the Lions Club of Tuggerah Shores took on fund raising for a stand-alone palliative care facility for the Central Coast,” Ms Charlton said.
“Elsie’s Retreat is comprised of various members of the community who have all come together with a joint cause to support quality palliative care services for local residents regardless of their age or circumstances.
“We have a terrific community based service at the moment, but it is stretched to its limits.
“We are the largest region in NSW that does not have its own stand-alone palliative care unit.”
Ms Charlton said the needs of the patient, family and carer during their end of life period vary over time and care setting, so services need to be responsive, coordinated and flexible in meeting those changing needs.
“We propose to establish a specialty sub-acute stand-alone Palliative Care Unit on the Central Coast to provide a group of services in the continuum of care required for patients experiencing a life-limiting illness within the Central Coast Local Health District.
“A stand-alone unit is a cost-effective solution to house a dedicated Palliative Care multidisciplinary team to meet patients’ end-of-life preferences and needs,” she said.
The Elsie’s Retreat campaign is similar to that mounted by the local community to establish the now highly successful Central Coast Cancer Centre at Gosford.
“Similar Australian models to our suggested approach have demonstrated consistent improvement in patient outcomes and experiences in Palliative Care Outcome Collaboration (PCOC) data, reduced need for transfer of patients at end-of-life, staff and patient survey data and individual patient stories collected.
“Conversely, the Australian Commission on Safety and Quality in Health Care undertook scoping and preliminary consultation work to identify the key factors affecting the quality of end of life care when patients are admitted into acute hospital beds.
“The study found that acute care focusses on diagnosis, treatment, cure and discharge rather than end-of-life care.
“Deaths are evaluated in terms of unexpectedness and potential preventability, rather than on quality of end of life care.
“Care is frequently provided by strangers and in urgent circumstances with a lack of holistic approaches.
“This approach does not provide the necessary, impeccable care to the dying patient that the patient, families and our community expect and deserve.
“The service as described could potentially either be run as part of the Local Health District such as the stand-alone specialty sub-acute Palliative Care Unit at Wauchope District Memorial Hospital, or by an Affiliated Health Organisation (AHO) such as the Mater in Newcastle.”
According to Ms Charlton, the cost of keeping a patient in an acute hospital bed was $1800 per day compared to $1000 per day for a palliative care hospice staffed by palliative care specialists (nurses and doctors).
The investment by the State Government would be in the region of $4.5 million per year but would be offset by the reduced requirement for acute beds, ambulances and would free up the existing burden on the region’s emergency departments.
The Rotary Club of Umina has also offered its support for the fund raising and awareness raising efforts of Elsie’s Retreat.
“Members of our committee are speaking to service clubs and organisations across the community every week at the moment.
“There is nobody who has told us it is a bad idea.”
Ms Charlton said the Elsie’s Retreat committee would shortly be organising a charity ball.
Presentation notes, Apr 24
Interview, Apr 26
Anne Charlton, Elsie’s Retreat
Jackie Pearson, journalist