Stroke survivors and their carers hold nation’s first stroke summit
Posted 30th October, 2012
Call for urgent action at parliament house.
There are 350,000 Australians living with stroke, the second biggest cause of death and a major cause of disability, yet this condition is neglected, underfunded and barely rates a mention on the health agenda, the nation’s first stroke summit will hear today in Canberra.
Seventy stroke survivors, their carers and families will lead this push for action around stroke. A stroke affects an Australian every 10 minutes.
Stroke survivor Wendy Corp and her husband Paul Corp are among the group that will endorse a Fight Stroke – Call to Action describing stroke as a neglected and underfunded health crisis and outlining the areas that urgently need improvement.
The document highlights eight areas where people could be better prepared to prevent stroke, better treatment for those who have had a stroke and better support so that people can recover from their stroke.
When Wendy had a major stroke, Paul says he didn’t even know what a stroke was.
“At hospital they sent me out to the waiting room and told me to find a pamphlet called “stroke”’, he says. “That was it. The lack of recognition and understanding of stroke in Australia is nothing short of disgusting.”
“We have had some horrible experiences in our time. Stroke is multifaceted and still people’s knowledge is narrow. It can happen to anyone at any moment but you hear more about cancer, there is more understanding about cancer.”
The summit, organised by the National Stroke Foundation, follows a series of forums held in all capital cities. These were attended by hundreds of stroke survivors, their carers and their families who spoke about their experience of living with stroke in a society that neglects this devastating disease. The Fight Stroke – Call to Action was developed from their priorities.
Stroke survivors and carers spoke of their frustration at the poor state of stroke prevention, treatment and support. Their comments included:
“The doctor knew my mother died of a stroke but I didn’t know that meant I was at increased risk.”
“The GP apologised profusely when my husband had his second massive stroke. They knew after the first stroke that he had atrial fibrillation (a stroke risk factor) and after the second stroke told us he had high cholesterol. The problem was they didn’t tell us BEFORE he had his stroke.”
“I couldn’t have tPA (clot-busting medication) because the one doctor able to administer it couldn’t be contacted. They said his phone just kept diverting to voicemail …”
The need for discharge planning follow-up and support at home was put very clearly by stroke survivor Janet Corcoran from Queensland:
“Was I ready to go home? NO! No one knew whether I lived upstairs, downstairs, needed any help … I was sent home with nothing. No further treatment, no follow-up appointments. Just nothing.”
Stroke Foundation chief executive Dr Erin Lalor said the forums highlighted the inadequacy of stroke treatment and services. Dr Lalor said despite the fact stroke was made a National Health Priority in 1996 the disease has not once received any dedicated federal budget funding. It has also been the subject of three federal strategies and a cardiovascular disease review in that time and the recommendations of all reports have not been implemented.
“When stroke doesn’t kill it often leaves a devastating disability and still, knowing as we do that stroke is treatable and preventable, stroke remains a very low priority on the national health agenda.”
Members of the summit will present to federal Parliament their statement which highlights the areas where stroke is mismanaged and overlooked. They will call on the Australian Government to properly invest in programs and policy that ensure people have the best chance of returning to happy and productive lives.
Those attending the summit include:
- Stephen, who was living alone at the time of his stroke in 2006. When he was discharged he couldn’t read names or numbers or sequence tasks. He couldn’t talk on the phone or understand messages. He had no formal discharge assessment, was not referred on to any rehabilitation services and was told he needed speech therapy but it was not available. He was told he needed to arrange someone to stay with him. His sister came from interstate for a short time but was given scant information about stroke or how to support her brother.
- Sisters Helen and Susan, who have fought to keep their mother out of a nursing home since her stroke and now divide the task of being full-time carers, “Stroke is … such a shocking ride,” they say. “Nothing can prepare you for it.”
- Lloyd Masters, whose brain stem stroke – the most severe kind – was misdiagnosed for several days and whose wife, Judy had to fight for a place on a stroke unit even after Lloyd’s second stroke.
- Wendy Corp, who lost most of her communication skills with her stroke but was given no effective speech therapy in rehabilitation.