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Survey reveals lack of support for stroke in Scotland

“All I needed them to ask me was: How was I feeling?”

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As part of World Stroke Day, the Stroke Association have conducted a survey focussed on psychological support for stroke in Scotland.

Over 100 Scottish stroke survivors answered the survey and the results show that they are at risk of being let down in hospital as they go without psychological care.

The results of the survey were published as part of a report by the Stroke Association, “Keeping Stroke Recoveries in Mind”, which provides an urgent call for improved psychological care after stroke.

The survey found that 95 per cent reported that stroke had an impact on their psychological and emotional wellbeing.

Of those, over one in three (39 per cent) said that the emotional impacts were severe, whilst 36 per cent said the physical effects were severe.

Paula McGuire, a young stroke survivor, from Glasgow who suffered her stroke last year, has shared her first hand experience of the devastating effects stroke has on emotional wellbeing.

Paula explained that whilst she suffers with mild physical effects from her stroke, she finds this more bearable than her anxiety, she says: “My feelings of anxiety accelerated to levels I had never experienced before. I can only describe it as overwhelming and felt completely lost and alone trying to unpick what was going on, asking myself whether it was my fault.”

Paula highlights that low mood and anxiety would leave her unable to leave her house and partake in everyday tasks.

She continues on to say: “I kept telling myself to try harder and face my challenges. I didn’t understand what was going on and it was very frightening. Fortunately, the nursing staff on the ward identified my low mood and anxiety early on and helped me to understand and process the changes I was facing.”

Some doctors wanted to treat Paula’s physical problems without taking account of her anxiety “All I needed them to ask me was: How was I feeling?” Says Paula.

The report shows that most stroke survivors surveyed do not feel they got the psychological support they needed in hospital (73 per cent) or in the community (68 per cent) for stroke in Scotland.

Paula concludes by sharing her frustrations to the lack of support there is for emotional distress some stroke survivors suffer: “I was a wreck.  I’d had a stroke at 40. How could anyone cope with that? People should have the same amount and standard of care for their emotional health as is given to those with physical challenges after stroke.  It needs to be embedded into the system.”

95 per cent of stroke survivors in this report sated they want to see equal access to physical and psychological care within their rehabilitation.

John Watson, Associate Director for the Stroke Association in Scotland says: “A stroke happens in the brain, the control centre for who we are and what we can do. The impact can be devastating – wiping out speech or rendering people unable to walk. 

“The emotional consequences of stroke can be life shattering – an overnight change to our emotions, personality and sense of self. These findings are further evidence of the desperate need for the system to address the psychological consequences of stroke.”

“Whilst guidance on psychological care and assessment and access to services has been included in the Progressive Stroke Pathway, we know that psychological care is lacking as highlighted in The Scottish Stroke Care Audit

With support from the Scottish Government, health boards have an opportunity to change that.”

Off the back of this report, the Stroke Association is calling for the following to be done to help with stroke in Scotland:

· The recommendations to be included in the forthcoming Scottish Government’s Stroke Improvement Plan.

· Health boards to commit to delivering those recommendations and make psychological and emotional care a priority in stroke rehabilitation.

· The Scottish Government to support health boards implement the recommendations – offering appropriate resource as required.

Watson continues to say: “This not just about recruiting more psychologists to treat people affected by stroke. Everyone working with stroke survivors at every level has a role to play in understanding and integrating psychological care into stroke services.

“An adequate level of education and training must be given to staff to meet their responsibility, and give them the skills in providing that care. This is critical to help people with emotional challenges after stroke to live well.”

Dr Jackie Hamilton, Consultant Clinical Neuropsychologist on behalf of the Scottish Stroke Psychology Forum says:

“Throughout my years of experience working in stroke services I have found that often the focus is on physical recovery in the early period after stroke. 

“What is frequently less understood is the impact of ‘hidden problems or challenges’ to achieving best physical outcomes as well as overall outcomes. 

“Psychological care is not just managing anxiety and depression. It is also incorporates identifying and managing cognitive impairment and multi-factorial distress, such as the effects of experiencing a traumatic event, fear of recurring stroke, loss of role and identity, and changes to relationships and employment. 

“These are all factors which are recognised as significant barriers to rehabilitation and adjustment. As such these should be considered at all stages when working and supporting individuals and their families across their rehabilitation journey. “

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