• New report from leading health charity reveals poor mental health and loneliness are endemic in people who are affected by the communication disorder aphasia after a stroke

• More than half (52 per cent) of people with aphasia say their condition affects their mental health

• Nearly half (48 per cent) with aphasia said they experienced loneliness as a result of their condition.

• 43 per cent of people with aphasia said it impacted on their ability to work as before
• A third (34 per cent) of people with aphasia reported being treated negatively due to their condition

A new report from Chest Heart & Stroke Scotland released ahead of Aphasia Month (June) has revealed that poor mental health and loneliness are severely impacting people in Scotland living with aphasia, the communication disorder that affects 1 in 3 stroke survivors. It is estimated that there are over 40,000 people in Scotland living with the condition. 

The charity surveyed nearly 2000 people living with chest, heart and stroke conditions and Long Covid, including people with aphasia, to understand the challenges facing people living with the conditions it supports.

The results showed that challenges accessing rehabilitation and support services have a significant impact on the mental health of people who struggle with communication following a stroke.

In addition to the impact on mental health, relationships and access to work, Chest Heart & Stroke Scotland’s report also revealed that:

• Two thirds of people with aphasia (67 per cent) experienced some kind of difficulty in accessing services

• Half (50 per cent) say there was support they needed but weren’t able to access
• 14 per cent said that they needed specialist mental health support because of their condition however had not been able to access it

Chest Heart & Stroke Scotland chief executive Jane-Claire Judson said: “Communicating freely with family, friends and loved ones, and for work, is something that many of us take for granted. But for those living with aphasia, all that can be taken away in an instant.

“We know from surveying people living with our conditions, and through our aphasia support groups, that the impact of this condition is life-changing, leading to mental health issues, and feelings of isolation and loneliness

“Often people report a lack of connection with others due to communication difficulties or being able to take part in activities they once enjoyed. Many even report being treated negatively as a result of their condition, which devastatingly impacts their mental health.

“The Scottish Government must make sure that people with aphasia are getting the support they need, including access to speech and language therapy for as long as they need it, and ongoing community support.

“There is so much more that can be done to support the thousands of people living with aphasia across Scotland to enable them to connect with loved ones and get back to activities and employment. We need action now.”

Glenn Carter, Head of the Royal College of Speech and Language Therapists, Scotland, said: “Communication is core to who we are as humans. This report powerfully illustrates how aphasia can negatively impact mental health, exacerbate feelings of isolation and perpetuate stigma. Improving access to speech and language therapy services can unlock the potential of stroke survivors, providing them with the necessary support and hope they need to reintegrate into work, pursue hobbies and connect with their loved ones.”

Aphasia is a communication difficulty that affects 1 in 3 stroke survivors. Although it is most common after a stroke, it can occur with other neurological conditions and brain injury. Public understanding of the condition has improved since the family of actor Bruce Willis announced in 2022 he had been diagnosed with aphasia.

People with aphasia can have difficulty using words to express themselves, and sometimes have difficulty understanding words. Some people with aphasia also have difficulties in cognition or thinking.

Real life experience

Martin McKelvie, 57, lives in Barrhead, Renfrewshire. A former area manager with Glasgow City Council, Martin had a stroke in March 2022 that has left him with the communication disorder, aphasia. Martin joined a stroke communication group run by Chest Heart & Stroke Scotland in Paisley and is now helping new group members negotiate a new life with aphasia.

Martin has aphasia, a language disorder that means he struggles to communicate. He was left with the condition after a stroke in March 2022. Now Martin is not only learning to live with aphasia, he’s also helping fellow stroke survivors, too, as part of a communication support group run by Chest Heart & Stroke Scotland.

Dad-of-two Martin said: “My wife Trisha and daughter Caroline had to talk me into going along to the support group as it’s not really my thing. I’m so glad they did. It has made a real difference to me in my recovery.

“I couldn’t have imagined I’d be the one now helping someone else do the same thing, but being part of the group has given me some confidence back.”

There had been no hint of any health problems for Martin before his stroke. A regular at the gym, he had run marathons and Tough Mudders and was kept on his toes by a demanding job as an area manager in parks and cleansing with Glasgow City Council.

But as he parked in his driveway after the working day, suddenly he couldn’t move or speak. Trisha assumed he was on the phone when he didn’t immediately come in.

He recalled: “I knew I was having a stroke. I tried to get out of the car and couldn’t move. I couldn’t do anything.

“After about 10 minutes she came outside and realised what was happening immediately and called 999.”

Martin was admitted to the Royal Alexandra Hospital in Paisley but then almost immediately transferred to the Queen Elizabeth University Hospital in Glasgow because of the seriousness of his condition.

His physical recovery was slow, helped by intensive physiotherapy and occupational therapy. However, his speech did not return, and the family were told Martin had aphasia. None of them had ever heard of the condition or realised what it might mean for Martin.

Determined to return to work, Martin worked hard with the various therapists, including a speech and language specialist and a stroke psychologist. While his speech gradually improved, he still struggled to find everyday words or even say his own name or understand a calendar.

He said: “I was so sure I could go back to work. But the therapist was so honest with me. She told me I was miles off going back to doing what I’d done, like working with spreadsheets and writing reports. In my job, I’d have to speak to maybe 100 men at a time – how could I do that when I couldn’t even remember the months of the year?”

Just four months short of marking 40 years of service to Glasgow City Council, Martin took medical retirement in April 2023. He says his recovery was two steps forward – literally – and one step back at this time, admitting he felt depressed and isolated by the effects of the stroke.

The occupational therapist told Martin that Chest Heart & Stroke Scotland could offer him some help, but he was reluctant to visit the communication support group in Paisley as he felt this was not for him.

He said: “I’ve never been one for joining clubs. I couldn’t see what good this could do for me. But the OT kept insisting and my wife and daughter persuaded me, too. I eventually went to the first meeting and there was only Lynette Hall, who runs the group, and two other people there.

“I was very nervous. I wasn’t sure if I’d go back, but my daughter told me I would!

“I know there are a lot of people who are physically worse off than me, but we all share the same experiences. That’s what has been so good about the group. Everyone understands what the others are going through. I’m so glad I got over thinking this was a club I wouldn’t want to join.

“I know I’ve come a long way in the last 18 months. Lynette recently asked me to sit with a new guy to the group and give him a bit of help with reading. I was so nervous, I was sweating. I used to do lots of training in my job and I was never fazed by it, but doing this made me so apprehensive.

“When the group was over and we were walking out, he came over to talk to me and we spoke for ages. We spoke for so long his wife eventually came to get him. And the session went so well, Lynette asked me to do at the next group with him, and that felt amazing.

“My wife Trisha and daughter Caroline had to talk me into going along to the support group as it’s not really my thing. I’m so glad they did. It has made a real difference to me in my recovery.

“I couldn’t have imagined I’d be the one now helping someone else do the same thing, but being part of the group has given me some confidence back.”

Despite the way stroke has upended his life, Martin remains positive and thankful.

He said: “I don’t know what I would have done without Trisha. She took three months off work to help me recover, but I might not even be here without her.

“The day I had the stroke, Trisha had been offered an extra shift and asked me if she should do it. I don’t know why, but I told her no, she should take care of herself first. If Trisha had been at work, who knows what would have happened to me? Something or someone was looking out for me.”

If you’re living with the effects of a chest, heart or stroke condition or Long Covid and looking for advice and information, please contact Chest Heart & Stroke Scotland’s Advice Line on 0808 801 0899.  You can also text NURSE to 66777 or email adviceline@chss.org.uk