Official Report 1039KB pdf
The final item of business is a members’ business debate on motion S6M-18720, in the name of Rona Mackay, on awareness of aphasia.
The debate will be concluded without any question being put. I invite members who wish to participate to press their request-to-speak buttons.
Motion debated,
That the Parliament notes that aphasia, which is a language disorder that affects one in three stroke survivors, and can also arise with other neurological conditions or head injuries, can have a significant impact on many people; understands that it can affect speech production and understanding, reading, writing and using numbers and that the level of difficulty experienced varies from person to person, from mild to severe; recognises the significant impact aphasia can have on a person’s life, including leading to feelings of isolation, loneliness and mental health issues; notes the impact that aphasia can have on a person’s relationships with family and friends, everyday social interactions and access to work or services, as well as the stigma and negative treatment that can arise from living with the condition; welcomes the ongoing work of Chest Heart & Stroke Scotland (CHSS) to support people living with aphasia through resources and services; further welcomes the new CHSS course, Living Well with Aphasia, which focuses on giving stroke survivors the information, skills and resources to live well with the condition; notes the calls on the Scottish Government, NHS boards and other key organisations to be better informed about aphasia and to have a greater understanding of the reality of living with what can be a serious and potentially devastating health condition, and further notes the calls to improve access to supported self-management and rehabilitation services for people living with aphasia in Strathkelvin and Bearsden and across the country, to ensure that everyone gets the support that they deserve.
18:07
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.
We move to the open debate.
18:15
I thank Rona Mackay for securing this members’ business debate today, more so because it is the first time that aphasia has been debated as a stand-alone issue in the Scottish Parliament. I welcome one of my constituents, Nancy Bannon, who is in the gallery with other members of Chest Heart & Stroke Scotland’s aphasia reference group. I also thank Chest Heart & Stroke Scotland and the Stroke Association for their briefings for the debate.
The recognition of this issue within the Scottish Parliament has been called an “historic event” by the reference group, as Rona Mackay referred to, but I feel that recognition is a long time coming. We, in this place, must stop procrastinating, and we must use this debate as a stepping stone to do more to combat the condition of aphasia and to support people who suffer from it.
I believe that, in order to do that, we have to take one step back and look at the main causes of aphasia and at what we can do to prevent it from happening in the first place. The phrase “prevention is better than cure” has never applied more, and we must move towards preventative medicine wherever possible.
As Ms Mackay mentioned in her opening remarks, aphasia is a language and speech disorder that happens when the language centres of the brain are damaged. Aphasia does not affect a person’s intelligence, but people have difficulty finding and saying what they want to say, and they have trouble understanding other people. There are challenges with reading, writing and numbers, and everyday tasks such as using the telephone, asking for directions and socialising become particularly frustrating.
I ask members to imagine what that must be like: you know what you want to say, but you cannot say it. You are literally trapped inside your own head, and basic communication with loved ones or friends is challenging at best. You are, in effect, locked in. I cannot comprehend how that must feel.
That is why CHSS’s course on “Living well with aphasia”, as the motion says,
“focuses on giving stroke survivors the information, skills and resources to live well with the condition”.
That is vital, and I applaud CHSS’s support in that regard. I also call on the Government to improve access to supported self-management and rehabilitation services for people who are living with aphasia.
What is most concerning is that all that comes from damage to the brain, possibly from a head injury but more commonly derived from stroke. There are currently around 150,000 people in Scotland who are living with the effects of stroke, and 50,000 people are living with aphasia as a result. We know that 10,000 strokes occur in Scotland annually; that Scotland has the highest stroke incidence in the United Kingdom; that outcomes are poorer here than in the other UK nations; and that stroke is the leading cause of adult disability. Those are shocking statistics, so we must end the cycle through affirmative action.
I have spoken many times in the chamber about the need for a 24-hour, seven-days-a-week national thrombectomy service in Scotland. It was in the Government’s “Stroke Improvement Plan 2023”, but we are no further forward in seeing that being implemented on the ground.
The early removal of a clot reduces the amount of the brain that is damaged, and many patients fully recover to lead full and productive lives. It is estimated that each patient treated by thrombectomy saves the national health service around £47,000 per patient in on-going support. However, if someone has a stroke at 5.30 on a Friday afternoon, their chances of recovering fully are drastically reduced.
In my closing remarks, I say to the minister that, as much as I join other members today in recognising aphasia, I believe that a 24-hour, seven-days-a-week national thrombectomy service would go a long way to reducing not only the numbers of stroke victims and what they have to put up with, but the numbers of those with aphasia. I urge the Government to stand by its 2023 commitment for them all.
18:19
I am happy to support and speak to the motion, and I congratulate Rona Mackay on securing this debate on aphasia, which is a hidden communication disorder that affects many lives in Scotland, as Rona Mackay highlighted well in her opening speech. I, too, welcome everyone to the gallery.
Aphasia arises when the language centres of the brain are damaged, most commonly due to stroke but also through brain injury or neurological disease. It impacts a person’s ability to speak, understand, read or write and text, yet it leaves intelligence intact, which leads to misunderstanding and stigma.
In Scotland, the incidence of aphasia following someone’s first stroke varies across regions and affects approximately 54 people per 100,000 each year in NHS Borders. Given that a third of stroke survivors have aphasia, there could be as many as 128 new cases in Dumfries and Galloway annually. That means that, across the country, thousands are entering a world of sudden silence. Nationally, an estimated 350,000 people in the United Kingdom live with aphasia: nearly two-thirds of stroke survivors, which is more than those who are affected by Parkinson’s disease, multiple sclerosis or cerebral palsy. However, nine out of 10 people have never heard of the condition, which is exactly why we are here today, so it is worth having this debate.
I have heard of aphasia, because I have been a registered nurse since 1988. In my work, over many years, I have looked after many people with aphasia and I have witnessed not only the challenges that are faced by the person who is affected but challenges to my ability to interpret and provide the best care.
Without visible signs, many people with aphasia are dismissed as confused or even drunk, as Rona Mackay has stated. However, all that they need is for us to have patience and take a wee bit of time to understand them.
The consequences of aphasia can be profound and include isolation, loss of confidence, difficulty in work and relationships and mental health challenges. After my close friend Mike—who we sadly lost a couple of years ago—had a severe stroke, he was left without speech. We could see how frustrated he was, because he knew what he wanted to say, but he could not get the words out.
A research report that was published by Chest Heart & Stroke Scotland describes the devastation that is felt by people who are not able to communicate, which leads to feelings of isolation and loneliness and to mental health issues. We can and should do better. Thankfully, inspiring initiatives are emerging here and across the UK. Last June’s rocking aphasia campaign saw painted pebbles left in public places, with each stone holding a story, urging finders to learn more, speak slower and listen with intent. Similarly, City St George’s, University of London collaborated with Aphasia Re-Connect to use music in storytelling concerts, underscoring how much remains behind the silence.
What can we do in Scotland? First, we must raise awareness. We must share aphasia facts, such as the fact that the condition affects up to a third of stroke survivors and that society often misjudges those experiencing aphasia. We need public education campaigns during stroke and dementia awareness weeks. We can promote the use of simple communication tools, which include picture boards, written cues and supportive care packs, such as those offered by the Stroke Association.
Secondly, we must support speech and language services. Organisations such as the Aphasia Alliance, Chest Heart & Stroke Scotland and Dyscover provide essential therapy and specialist aphasia support and run community groups. Funding those services must be a priority, particularly in rural and island communities where provision is uneven, including Dumfries and Galloway and the rest of the south-west of Scotland.
Thirdly, we need community inclusion. Councils, transport providers, retailers and public services can take simple steps to adopt aphasia-friendly practices, such as using slower speech in announcements and displaying appropriate written signage. A wee bit of patience can transform lives.
Finally, we must listen to lived experience. People with aphasia know best what helps, which can involve everything from adaptive therapy sessions to everyday social events. They should be at the heart of policy conversations.
Let me leave members with this: aphasia is not rare. It is common, disabling and deeply isolating. However, with education, training, support and inclusion, we can give voices back to those who are silenced by aphasia.
18:24
I thank Rona Mackay for bringing this debate to the chamber. As others have said, it is a historic first debate about the condition. I also welcome the visitors to the gallery, many of whom I met this afternoon. I want to give a special mention to Eileen Smith, who Rona Mackay mentioned, because we worked together almost 20 years ago. Eileen was a physiotherapist and, like many of our NHS staff, she gave her absolute all to support the clients we worked with, and it was a great privilege to work alongside her.
I thank all the visitors from Chest Heart & Stroke Scotland for meeting me and for the opportunity to hear their stories and to gain an understanding of some of the difficulties that they and their loved ones face. The people we meet in this place often shape us, and I found this meet-up useful in helping me to discuss policy in this area, and it was also heart-warming to be able to meet people who are so passionate about the issues that they wish to raise with us as MSPs.
Of course, I had prepared a speech for this debate, but I think that it is probably far more beneficial to share some of the information that was shared with me earlier today. I will use some of the language and the words that people used with me.
What do sufferers and their families want? As with so many of our constituents, they are not asking for too much at all. They want the condition to be understood, for parliamentarians to find ways to encourage understanding and patience, as Emma Harper said, and to support training in our businesses, the public sector and the wider community. They want people to understand that individuals with aphasia are not stupid or unable but just need some time to find the words.
As others have said, aphasia is a language and speech disorder that happens when the language centres of the brain are damaged. It is a long-term and life-changing condition—that is what many people shared with me today. It is mostly a disorder of older adults, and stroke is the major cause of adult aphasia, but it can also arise from brain injury or neurological disease.
When I worked in the health service, much of my experience involved working with people experiencing degenerative neurological conditions. In that role, I understood the power of language, the need for people to be understood and how speech, language and communication are the cornerstone of many of our interactions as human beings. Language and communication are crucial because they are the foundation of learning, they are key to relationships and relationship building and they help us to understand the world around us, particularly the shared world. They enable us to share ideas, build connections, develop empathy and succeed in our lives, whether that is in education, at work or in our social lives.
I am grateful to my constituents who volunteer at Speakability Tayside, who contacted me ahead of tonight’s debate. Does Ms Mochan agree that something that we can all do to support people with language disabilities, such as those she has outlined, is to undertake the free one-hour online training that is being developed by the Royal College of Speech and Language Therapists?
I absolutely agree with the member. I always take every opportunity to promote training, particularly from allied health professionals—Eileen Smith and I were in that category.
The loss of language has a significant impact on a person’s life, but this evening it is important to mention the impact on family members’ lives. It can be very difficult to watch someone not be able to find the words or to see another person question their intelligence or ability.
Others have highlighted the issues that we hope that the minister will respond to, so I will finish on a point that I often raise in the chamber, which is health inequalities. Research has shown that people who live in Scotland’s most deprived areas are more likely to die in their first year following a stroke than those in the less deprived areas, and that they are much less likely to receive the appropriate recommended treatments. I do not have time to go over that, but it is an important point to raise, and I hope that others will agree with me on it.
I thank members for their speeches and Rona Mackay for bringing the issue to the chamber.
18:29
I am pleased to speak in support of Rona Mackay’s motion. I thank her for securing the debate and for shining a light on aphasia and on the realities that are faced by many people who are impacted by the condition across the country. I join others in welcoming those in the gallery who have come to watch the debate.
As others have said, aphasia is not by any means a rare or marginal condition among stroke survivors. As has also been said, it can impact those with other neurological conditions or those with experience of head injury. Despite its prevalence, we know that it is a condition that remains poorly understood. Too often, it is misinterpreted as a lack of intelligence or engagement, when in fact it is a disorder of language and not of thought.
It is important, therefore, that we have this opportunity to highlight the impact of aphasia. I have to confess that I was very surprised to learn that this is the first occasion in the entire history of the Parliament’s 26-year existence on which we have had a debate dedicated to the subject matter. As Roz McCall suggested, aphasia is a subject to which we have not paid enough attention. Indeed, before this debate, I did a search—I should say that it was fairly rudimentary, so I would not accept this as absolute gospel—and I could find only five mentions of aphasia recorded in the Official Report across all the debates that we have had in the chamber since 1999. It is, therefore, very much to Rona Mackay’s credit that she has brought the debate to the chamber.
Language shapes how we participate in society—it underpins our relationships, our sense of identity and our ability to advocate for ourselves. When aphasia disrupts speech, understanding, reading or writing, it can profoundly affect a person’s independence and confidence. Anyone can see how that that could lead to isolation, loneliness and real challenges to mental health. Those are not abstract harms; they are daily realities for people and their families.
Just yesterday, I was speaking to a constituent about the impact that the after-effects of multiple strokes have had on his wife, and the impact on him as a carer. I recognise the impact that aphasia can have on relationships and social participation. Conversations that once flowed easily can become exhausting or frustrating. Accessing services, returning to work or even carrying out routine tasks can present barriers. When society fails to adapt, stigma and negative treatment can follow. That is why awareness and understanding should not be viewed as some form of optional extra; they are absolutely essential to better supporting people who are impacted by aphasia.
In that context, I very much welcome the outstanding work of Chest Heart & Stroke Scotland—the organisation has been mentioned a number of times, but I will mention it again. For a long time, CHSS has been a trusted partner, providing practical support, advocacy and community-based services for people who are living with stroke-related conditions, and I am very grateful to it for the work that it undertakes.
Improving outcomes for people with aphasia requires more than goodwill; it requires informed systems, NHS boards and public services. Those of us who are policy makers must better understand the condition and embed that understanding in service design and delivery, and in our deliberations in Parliament. Rehabilitation and supported self-management must be accessible, consistent and person centred.
Ultimately, it is about dignity, inclusion and fairness. People who are living with aphasia deserve to be heard, respected and supported to participate fully in our society. This debate—for which I am grateful; I thank Rona Mackay once again—gives Parliament, as an institution, the opportunity to send a clear message: that we recognise the challenges of aphasia, and that we value the contribution of those who are championing the issue and thank them for their campaigning activity. I am glad to have been able to take part in the debate to help do so.
18:33
I thank Rona Mackay for the opportunity to speak in this debate about aphasia. Among those who are joining us in the public gallery today are just some of the estimated 40,000 people in Scotland who live with the condition, often as a consequence of stroke or brain injury.
Despite the fact that aphasia is more common than many well-known conditions, including Parkinson’s disease, cerebral palsy and muscular dystrophy, many people across the country and more widely have never heard of it. We know that the ability to use and understand language underpins all our lives. For people with aphasia, that ability is impaired or sometimes lost altogether. All aspects of communication, from speaking and listening to reading and writing, can be affected. We can all recognise, not just as parliamentarians but as citizens—the people—of Scotland, the huge impact that the condition would have on a person’s life, their work and their relationships.
In comparison with other stroke survivors, people who live with aphasia are more likely to experience difficulties in returning to work, and as a consequence they are more likely to experience financial difficulties, too. Rona Mackay spoke eloquently about the issue of stigma—about how people are affected by it and how they are made to feel. That aspect can certainly be compounded by financial difficulties as a result of the condition.
It gives me great pride to see the work that is being done in Dundee and across the north-east to support people living with aphasia. Earlier this year, STV News told the story of Wendy Wallace from Dundee. After attending a series of art workshops with other people living with aphasia, Wendy found that she was able to use art to communicate in ways that she has struggled to do since having a stroke back in 2015. That is a moving reminder of the power of art to communicate when words fail us.
As mentioned by my colleague, Speakability Tayside is a volunteer-run support group for people living with aphasia. Speakability is part of the Stroke Association and it has supported people living with aphasia for 25 years. Ahead of the debate, I was pleased to hear from constituents who are involved in that important work as volunteers. They paid particular tribute to Helen Gowland from Broughty Ferry, who lives with aphasia and serves as chairperson of Speakability. Helen has led the group with distinction for 25 years, and my constituents were keen that she be recognised in the Parliament for her many years of service. I know that colleagues across the chamber will join me in thanking her for her work on behalf of her fellow sufferers and the community in which she lives.
Stroke remains a significant national problem, with more than 10,000 sufferers per annum in Scotland. It is a leading cause of adult disability in this country in many different ways. We have already heard about the plans that are in place to improve services, but the provision of thrombectomy in Scotland is very poor, running behind the rest of the UK in terms of its availability, both in geographic terms—where it is available—and, crucially, the times that it is available. If a stroke occurs within office hours, availability is much more widely spread. Roz McCall pointed out some of those facts.
Aphasia is just one consequence of the lack of ability to treat people in the golden hour when a difference can be made. I recently visited the image-guided therapy research facility led by Professor Iris Grunwald at the University of Dundee. Many people will have seen the coverage of mobile thrombectomy being done across the Atlantic, with a virtual reality facility allowing remote operations. If more of that availability was supported across Scotland, we could do much more to prevent the long-term health impacts that we see.
Volunteers have also told me that they desperately want to see increased awareness of the condition. I sincerely hope that today’s debate goes some way towards helping with that. There are simple steps that we can all take to help sufferers, such as reducing background noise, slowing down and giving people extra time to think and respond. That would make a world of difference to people with aphasia.
I am grateful to Dr Abi Roper, a speech and language therapist and research fellow based in Dundee, for sharing some of the excellent work that is being done. In August 2025, Dr Roper chaired the international aphasia conference in Dundee that brought together 200 people from across the globe who live with aphasia themselves, support others who do so or are researchers investigating the condition. It is hugely encouraging to hear that a growing international community is working together to better understand aphasia and support people living with it. I am sure that we wish them every success in the future, for the sake of the many thousands of people living with the condition across Scotland.
18:38
I thank Rona Mackay for lodging the motion, which highlights the important and often overlooked impacts of aphasia. As colleagues have noted, this is a historic moment, because it is the first time that the Scottish Parliament has dedicated a debate to the condition. I welcome members of the aphasia reference group to our Parliament this evening.
As we have heard, one in every three stroke survivors is affected by aphasia, and an estimated 40,000 people in Scotland are affected by the condition. In addition to stroke, aphasia can arise because of other neurological conditions or from head injuries.
As a language disorder, aphasia can impact people’s speech production and understanding, reading and writing, and their ability to use numbers. All these are activities of daily life that many of us take for granted. The impact of aphasia is different for everyone, as Rona Mackay noted.
Chest Heart & Stroke Scotland’s “No Life Half Lived: 1 in 5 Aphasia Report” highlighted that 52 per cent of people with aphasia said that their condition affects their mental health, which Jamie Hepburn noted in his contribution, and that 38 per cent of people surveyed reported being treated negatively because of their condition. That is unacceptable. I hope that, through our open and honest discussions tonight, we can play a small part in tackling the stigma that accompanies aphasia. I agree with Roz McCall that we should use the debate as a stepping stone.
In response to comments from Ms McCall and Michael Marra, I will give a wee bit of an update on the thrombectomy service. The Scottish Government remains committed to implementing a high-quality and clinically safe thrombectomy service that is available across Scotland whenever people need it. On 20 November, I wrote to all health board chief executives to reiterate the critical importance of their continued engagement in the development and delivery of the national thrombectomy service, and an update on service developments was sent to NHS colleagues on 12 November. To date, we have spent £51 million on expanding access to thrombectomy. Although we continue to face significant financial challenges, we are committed to further expanding the service.
In January, I was privileged to attend a meeting of Chest Heart & Stroke Scotland’s aphasia reference group in Edinburgh. The group acts as a source of advice for the organisation, helping to guide service development and campaigning work to reflect the experiences of individuals affected by aphasia. I place on record my thanks to the group for all that it does to ensure that aphasia is given the prominence that it deserves.
During the meeting, I met people living with aphasia and their loved ones, and I heard very personal and moving stories about the impact that the condition has on people’s lives—similar to Carol Mochan’s experience earlier today. We discussed everything from the importance of doing daily crosswords to the merits of the Bob Dylan film, “A Complete Unknown”. In reflecting on the contributions that I have heard tonight, I note that, in some respects, that seems an appropriate film title. I hope that we move some way to ensuring that aphasia is no longer a complete unknown, whether we achieve it through the power of art, which Michael Marra talked about, the work of groups such as Speakability Tayside, which Mercedes Villalba spoke about, or initiatives such as rocking aphasia, which Emma Harper mentioned.
As Carol Mochan said, we need to ensure that there is suitable training, and we need to understand, have patience and take the time to find and listen to people’s words.
I was struck, too, by the fact that no two individuals’ experiences of aphasia are the same, with its impact being felt in different ways and at different times. Common to all the stories that I heard was the profound impact that aphasia has on those who live with it, as well as the strength and support that they are able to provide to one other and more widely.
I also heard about the fantastic work that has been undertaken by Chest Heart & Stroke Scotland to support people who are affected by the condition, including through its course on living well with aphasia.
As Rona Mackay noted, Chest Heart & Stroke Scotland has called for improved access to rehabilitation and support services for those who are affected by aphasia, as well as for a rehab guarantee. An increased focus on rehabilitation is a key component of our stroke improvement plan, which was published in June 2023. NHS boards must now offer a formal review to anyone who has had a stroke, to take place six months after the stroke event and allowing re-referral into stroke services where required.
NHS boards must demonstrate that they have a documented service pathway describing communication and rehabilitation following stroke. NHS boards must also ensure that people who are identified as having a communication disorder after a stroke are assessed by a speech and language therapist and are provided with an individualised rehabilitation programme.
As part of the stroke improvement plan’s commitment to strengthening leadership in the delivery of stroke care, every NHS board now has an accountable individual with responsibility for such care. I recently chaired a round-table meeting with those individuals and was heartened by their commitment to working across geographical boundaries and sharing best practice in stroke care. I will continue to ensure that rehabilitation and communication disorders such as aphasia are prioritised in NHS board stroke services. I highlight the points that Jamie Hepburn made around the wider impacts through dignity, respect and inclusion.
We are also in the process of developing measures of rehabilitation to be included in the Scottish stroke care audit and patient reported experience measures of stroke care. Those tools will allow us to better understand the provision of rehabilitation and enable people who have been affected by stroke to have a voice in shaping improvements to stroke care and rehabilitation. I have asked my officials to review how those tools might be utilised to support our understanding of the services and support provided to those affected by aphasia.
I thank colleagues across the chamber for their contributions, and I thank Chest Heart & Stroke Scotland and the Stroke Association for their invaluable work in this area. Above all, I thank the individuals and families who live with aphasia for sharing their stories. Their courage and perseverance will help to ensure that we challenge the stigma of living with the condition. Together, we can make sure that the perspectives and thoughts of people with aphasia are not just heard but at the heart of the decisions that shape their lives.
Thank, you minister. That concludes the debate.
Meeting closed at 18:45.Previous
Decision Time