Patients falling through the gaps in care, as survey reveals inadequate psychological support after stroke in Scotland

95% reported stroke had an impact on their psychological wellbeing.

Most stroke survivors surveyed, do not feel they are getting the osychological support they need both in hospital (73%,) and in the community (68%.)

87% of stroke survivors in Scotland want to see equal access to physical and psychological care within their rehabilitation.

Stroke survivors with anxiety and depression risk being let down in hospital without psychological care, a new survey of over 100 stroke survivors in Scotland reveals today. The research, conducted by the Stroke Association ahead of World Stroke Day (29 October), is part of an urgent call for improved psychological care after stroke.

The results, contained in a Stroke Association report, “Keeping Stroke Recoveries in Mind”1, lay bare the unmet needs of stroke survivors in Scotland.

Nearly nine out of ten (89%) respondents revealed their stroke had an impact on their physical health, whereas 95% said their stroke had an impact on their psychological and emotional well-being. Of those, over one in three (39%) said the emotional impacts were severe compared to 36% who said the physical effects were severe.

Paula McGuire, 41, from Glasgow, who had her stroke last year, knows first-hand the devastation of the emotional impact of stroke.

Whilst Paula suffered mild physical effects from her stroke, she found this more bearable than her anxiety. She said: “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’s low mood and anxiety rendered her unable to leave the house and carry on with the everyday tasks which we all take for granted. Going shopping, driving, swimming and meeting up with friends were impossible to undertake. She continued: “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.”

But 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?"

Most stroke survivors surveyed do not feel they got the psychological support they needed in hospital (73%) or in the community (68%.)

Paula continued:

“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% of stroke survivors report they want to see equal access to physical and psychological care within their rehabilitation.

John Watson, Associate Director for the Stroke Association in Scotland said:

“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 evidence2,3 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 Pathway4, we know that psychological care is lacking as highlighted in The Scottish Stroke Care Audit5. With support from the Scottish Government, health boards have an opportunity to change that.”

The charity’s recommendations in its report, are based on proposals put forward by the Scottish Stroke Psychology Forum which seeks to give psychological care equal prioritisation to other forms of rehabilitation which focus on the physical effects of stroke.

John continued:

“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 said:

"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.  

-Ends-

95% reported stroke had an impact on their emotional wellbeing.

Nearly nine in ten 89% of respondents revealed their stroke had an impact on their physical health,

Around 39% reported either a sever or very severe impact on their mental health and emotional wellbeing

Around 36% reported a severe or very severe impact on their physical health

Despite this, only 25% report to have received enough mental health support once they were home from hospital.

Most stroke survivors surveyed, do not feel they are getting the support they need both in hospital (73%,) and in the community (68%.)

95% of stroke survivors in Scotland want to see equal access to physical and psychological care within their rehabilitation.

References:

1. “Keeping Stroke Recoveries in Mind”, Stroke Association, 2022 https://www.stroke.org.uk/keeping-stroke-recoveries-mind

2. Lived Experience of Stroke 2019, Stroke Association:

https://www.stroke.org.uk/lived-experience-of-stroke-report

3. Recoveries At Risk, Stroke Association, 2020

https://www.stroke.org.uk/stroke-recoveries-at-risk-report

4. Progressive Stroke Pathway, March 2022, Scottish Government:

https://www.gov.scot/publications/progressive-stroke-pathway/documents/

5. Scottish Stroke Care Audit

https://www.strokeaudit.scot.nhs.uk/index.html