Hansard

This is the Parliament’s first debate on aphasia, and it is a historic moment for those who are living with the condition and for their loved ones. I am delighted to welcome to the public gallery members of Chest Heart & Stroke Scotland’s aphasia reference group, who have helped to make today’s debate possible by sharing their experience. Their presence tonight makes the debate all the more special.

What is aphasia? It is a language and speech disorder that happens when the language centres of the brain are damaged. It is estimated that, in Scotland alone, more than 40,000 people are living with aphasia. Around one in three people who have a stroke are likely to develop aphasia, and approximately 11,000 people in Scotland have a stroke each year. I really hope, therefore, that tonight’s debate can raise awareness and understanding of the condition.

I recognise the amazing work that Chest Heart & Stroke Scotland does to support people who are affected by aphasia, and their families, every day. Chest Heart & Stroke Scotland is Scotland’s largest health charity supporting people who are living with chest, heart or stroke conditions or with long Covid, including people with aphasia. I thank the organisation for presenting me with the lovely scarf that I am wearing—the pink stripe symbolises the one in three people who are likely to develop aphasia after a stroke.

In the past year, CHSS has supported more than 600 people with aphasia, and their loved ones, through its various services. Over the past three years, the charity has supported more than 2,650 people living with aphasia. It currently offers a range of support measures, including its newly piloted “Living well with aphasia” self-management course and other community support services.

Getting through the day can be a struggle for people with aphasia as they try to do things that most of us take for granted. Aphasia has a significant impact on people’s lives. Chest Heart & Stroke Scotland’s “No Life Half Lived: 1 in 5 Aphasia Report” found that the condition impacts a person’s mental health, their independence and their ability to work.

Stigma is another challenge for people to bear; I will return to that later in my speech. Those with aphasia also need increased access to rehabilitation and support services. In that regard, CHSS is calling for a rehab guarantee to provide an assessment for rehab and support on diagnosis or discharge in order to help ensure that a person’s needs are met.

CHSS’s new aphasia framework details how it will continue to support people in Scotland who are living with the condition, and that includes raising awareness.

People with aphasia can have difficulty with some or all forms of communication: reading, listening, speaking, writing and texting. It can affect their ability to use and understand numbers, and they may also have problems with thinking, memory and planning. As with most conditions, however, living with aphasia is different for everyone.

It is crucial to realise that aphasia itself does not affect intelligence. People with aphasia still know what they want to say; they just struggle to express it. Two thirds of people with aphasia—that is 69 per cent—said that their condition affected their ability to communicate with others. When people cannot express their wishes or needs, it can lead to people feeling as though they do not have control of their lives any more. It can also change relationship dynamics and the ability to participate in hobbies, social events and wider life that we all take for granted.

A total of 52 per cent of people with aphasia who were surveyed said that their condition affected their mental health, and nearly half the group had experienced loneliness. I spoke earlier about stigma: 38 per cent of people with aphasia who were surveyed reported being treated negatively because of their condition, and some were even accused of being drunk when they attempted to speak. A lack of awareness of the impact of aphasia and of how it presents plays a part in that. Given the way in which ignorance of the condition and a complete lack of understanding can contribute to stigma, it is clear that awareness raising and education are vital. Worryingly, a third of stroke survivors who had experienced stigma said that it made them less likely to seek help.

I would like to give members an insight into what it is like to live with aphasia. Eileen Smith of Newton Mearns and Richard Fisher from Stirlingshire have kindly allowed me to highlight their cases. Eileen said:

“In 2018 I had a stroke because of an aneurysm. One lasting outcome of the stroke is that I had to leave the physiotherapist job I loved, but the most devastating effect is that I now live with aphasia, a language and communication disorder. I want to tell you what it has done to me, but I cannot do it on my own. Aphasia means I struggle to speak and write and express myself clearly and quickly. I used to love maths but now I can’t figure out numbers at all. This is what aphasia does to me every day. Every day is difficult. Even shopping is a challenge—I have to write little notes and hand them over sometimes. My husband David deals with a lot of things—I don’t know what I’d do without him, because not being able to talk easily or express yourself the way you want to is incredibly frustrating and scary.”

Richard Fisher, aged 50, was an air wing paramedic with the Scottish Ambulance Service. He had a stroke in April 2024 that left him with aphasia. As part of his recovery, Richard participated in the CHSS aphasia self-management course in Stirling earlier this year. Despite working for more than a decade as a paramedic, Richard admits that he knew little about stroke or aphasia. He said,

“I knew enough about stroke to get someone to A and E safely, but aphasia is not something we learned about in the ambulance service. I knew nothing about it until it happened to me, then I felt as though I’d been cut off from the world because I couldn’t communicate the way I used to. In the self-management group we spent a lot of time laughing about the things we struggle with or ended up saying. We were all in the same boat so it was good to be able to laugh at ourselves.”

Richard’s wife, Mo, watched as his confidence grew over the weeks that he attended. She said,

“The group set up a WhatsApp with everyone who was on the course and it was a way that they could communicate. Richard showed them how to do a voice record if they couldn’t do that, and now a few of them are using that. These are the hints that you don’t realise are useful until you are with people who cannot do what they used to do.”

So, what has been done to help people with aphasia, and what more needs to be done? The Scottish Government’s document, “A Progressive Stroke Pathway”, states:

“People who are identified as having a communication disorder after a stroke should be assessed by a speech and language therapist and provided with an individualised rehabilitation programme”.

The Government has set out the aim that, by 2025, all adults will receive rehabilitation when and where they need it. That vision is supported by the Government’s strategy, “Rehabilitation and Recovery: A Once for Scotland Person-Centred Approach to Rehabilitation in a Post-COVID Era”, and it received cross-party support at the 2021 elections. I welcomed the response by the Minister for Public Health and Women’s Health to the claim from CHSS that that aim has not yet been achieved.

There is much to say about the subject, but I see that I am rapidly running out of time, so I will cut to the end. In conclusion, let us hope that this historic debate shines a light on what can be done to understand and raise awareness of this debilitating condition. People who are living with aphasia deserve nothing less. Their needs may have changed, but they are the same people, loved by family and friends, as they were before having the condition, and we must support them to live as comfortably and as well as possible.