Campaigners believe a re-branding of the word stroke will achieve heightened awareness for the condition - but not everyone agrees
Anyone unlucky enough to succumb to Scotland’s third biggest killer will know recovery is often down to the speed and quality of treatment they receive at the hands of Scotland’s dedicated health professionals.
Last year stroke killed an estimated 4,500 people in Scotland and left many more with life-changing physical and mental disabilities.
Yet despite being one of the country’s most deadly conditions, there is growing unease at how stroke is being viewed, so much so there is now a growing movement for the term to be rebranded in a bid to gain the same foothold in awareness that cancer and heart disease have achieved.
Although incidence and mortality of stroke has decreased in the last 20 years, there are still 120,000 stroke survivors living with its effects in Scotland, many of whom rely on the help of others to carry out every day activities.
In a bid to redress this, patient groups backed by medical professionals are considering reclassifying stroke as “brain attack” – a term already popular in the US – in a bid to fight the illness on the same terms as other killer conditions.
Sally Garner, who chairs Pulse, a stroke survivor group in Lanarkshire, said new approaches to tackle stroke were essential. Her husband Drew died in 2010 following a cerebral haemorrhage, despite him being in peak fitness.
“Scotland has become synonymous with heart disease and stroke and I’m of the opinion it is the poor relation in terms of care,” she told TFN. “I think it’s essential we at least have this dialogue about rebranding the term to work though how best to raise greater awareness of a condition that is an epidemic in Scotland.”
Garner has spoken to MSPs about new ways to tackle the killer condition and says many have the appetite to take forward a new awareness campaign that will put stroke higher up the health agenda.
“Nothing can change without political will,” she says. “We’re not trying to browbeat the NHS. We support the health service and defend it. It’s simply about shifting the priorities because we believe stroke needs a greater emphasis if we are to tackle the epidemic more effectively.”
Stroke is widely recognised as not only one of the country’s major killers but also takes up increasing amounts of the NHS’s budget. Specialist stroke units are now a requirement at all major hospitals in Scotland with the NHS obligated to admit all stroke patients to a specialist unit on the day of admission.
Lost for words
Stroke is the third biggest killer in Scotland and a leading cause of impairment and disability, yet awareness of stroke remains low
It kills twice as many women as breast cancer and more men than prostate and testicular cancer combined a year
For every cancer patient living in the UK, £241 is spent each year on medical research, compared with just £48 a year for every stroke patient
Around a quarter of strokes happen in people of working age
Although campaigners welcome these measures, treatment for stroke remains patchy across the country with some health boards allocating more resources and importance to the condition than others.
“That’s probably true across the entire NHS but I feel it is our duty to make sure stroke is being treated with the importance it deserves,” says Garner. “That’s why we want it rebranded. Many think it’s tokenism but we believe the move will place stroke higher up the medical agenda. If we don’t push for change things will remain the same. And I firmly believe stroke needs to be taken more seriously than it currently is.”
Margaret Somerville, director of services at Chest Heart & Stroke Scotland, said this discussion was welcome and was being increasingly raised by service users and stakeholders.
“Switching from using the term stroke to using brain attack has been raised by some of the people living with the condition we work with, and is therefore important to consider,” she said.
“We recognise that brain attack is helpful in reinforcing the similarities with a heart attack, but stroke is the more widely used term in medical contexts.
“We intend to consult with our networks of people living with the condition to find out what term they would like us to use in future.”
The Stroke Association it would continue to use both terms “synonymously”.
“The term stroke has not been re-branded by the organisation to brain attack," a spokeswoman said. "We do refer to stroke as a brain attack which needs to be treated as a medical emergency.”
However Professor Martin Dennis, chairman of the National Advisory Committee for Stroke in Scotland and head of the Brain Vascular Disease unit at Edinburgh University, cautioned against any move to rebrand stroke.
He told TFN using heart attack as a precedent wasn’t helpful because it is now used to describe a plethora of ailments and in itself has become a confusing term to many.
Brain attack as a term has had limited success in America, he said, and that the country’s track record for treating stroke wasn’t an aspirational target.
“We’re doing quite well in Scotland in terms of awareness of stroke, certainly over the last five years much more has been achieved through campaigns and raised awareness among health professionals.
“Rebranding stroke to brain attack wouldn’t be entirely helpful in this regard considering many are more aware of stroke, its causes and the risks.”
However, Dennis acknowledges some areas of stroke treatment remain very poorly resourced. Scotland, for example, has a severe shortage of neuroradiologists who are trained in endovascular coiling – specialists who are able to fix brain aneurisms which are a leading cause of stroke and sub-arachnoid haemorrhage. Currently the country can call on just three of these specialists, raising concern the shortage could compromise the ability of emergency treatment for these patients.
“It’s a critical issue that needs addressed,” said Dennis, “and is possibly the most pressing concern currently facing stroke medicine.”
Isla's story: Lost for Words
Three years ago 48 year old Isla Robertson suffered a stroke. A mother of three children, with a part time job, Isla’s life was busy.
It started with dizziness, followed by tingling sensations, then she couldn’t walk, hold her head up and she lost all sensation.
She wanted to ask what was happening but she lost the ability to speak. “I knew what I wanted to say but no-one could understand me,” she said.
“I felt scared and very confused – I had absolutely no control of my situation at the time.”
Isla’s mobility has been affected and her vision too, but the most frightening effects of the stroke was losing the ability to be understood. One of her most mortifying moments was when she couldn’t explain to the nurse that she had lost control of her bladder.
She says: “It really upset me to lose my dignity in this way and the sheer frustration of not being able to speak, or express myself was frightening.”
Asking for the things she needed or became a tremendous challenge. Saying yes or no was impossible at first and when she tried asking for coffee, they thought she meant tea. It broke her heart to think that her children couldn’t understand her.
Around one in three stroke survivors have trouble speaking or understanding after a stroke. This can leave them feeling scared, angry and isolated.
The Stroke Association Scotland wants to raise awareness of what a stroke-related communication difficulty (referred to as aphasia) is and the impact it has on someone’s life and ran a campaign during 2016 to highlight the issue. Although this has now ended the charity is keen others get in touch if they need support or information.
Now three years down the line, Isla has done well in regaining independence, but she still struggles with slurred speech and getting mixed up with words.
Isla practised the alphabet again and again to bring strength back to her voice so she could make herself understood. She told her children to tell her every time they couldn’t understand her so she could keep practicing.
“Having to deal with my aphasia has made me realise just how vital communication is – life is a lonely place without it.”
For more information visit www.stroke.org.uk