Hansard

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.