Meeting of the Parliament

Meeting date: Wednesday, November 30, 2022

Official Report 996KB pdf

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Stroke (Recovery)

The final item of business is a members’ business debate on motion S6M-06461, in the name of Gillian Mackay, on the Stroke Association’s report “Keeping Stroke Recoveries in Mind”, which was launched on world stroke day. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes the publication of the Stroke Association’s report, Keeping Stroke Recoveries in Mind, on World Stroke Day, 29 October, which focusses on patient experiences of the hidden effects of strokes; notes the key message in the report that emotional and psychological wellbeing for someone after a stroke is just as important as their physical recovery; further notes that the report outlines the results of the charity’s lived experience of stroke survey showing that almost all, 95%, of stroke survivors report experiencing psychological or an emotional impact as a result of their stroke, yet only 25% report having received enough support, and provides recommendations on a new approach for stroke services in Scotland as devised by the Scottish Stroke Psychology Forum and included in the Progressive Stroke Pathway, endorsed by the National Advisory Committee for Stroke earlier this year; understands that this new approach is a holistic model involving all stroke clinical and social care staff, and one which treats strokes as having an emotional and psychological impact from the point of diagnosis; further understands that there are around 15,000 people in Central Scotland who are living with the effects of their stroke; notes the calls for all 14 geographical NHS boards to appropriately resource and deliver the model for psychological care as part of a progressive stroke pathway and thus involve all those working in stroke care to improve the recovery experience for all stroke survivors, and warmly commends those people with lived experience of stroke who shared their experience to inform and shape this report.

17:21  

I am really pleased to have brought this debate to Parliament, as it is on such an important topic to me.

As many members know, almost two years ago, my mum died a week after having a stroke. My grandpa had a stroke that left him with aphasia, and my gran had a stroke and transient ischaemic attacks. I thought that, as a family, we knew stroke well, but I am always in awe of how every stroke survivor I have met shares their story and their honesty about how it has affected their lives and the lives of their families. The mechanism with which they have come to their condition is the same, but no two strokes have the same aftermath. I thank the Stroke Association and everyone who has shared their story with me for their hard work and commitment. Some of those people are joining us in the gallery this evening.

Stroke is the leading cause of disability in Scotland. Around 10,000 people have a stroke every year, and around 128,000 people across the country are currently living with the effects of their stroke. In my Central Scotland region, there are around 15,000 stroke survivors. Everyone who survives a stroke has the risk of experiencing a physical disability, cognitive problems or emotional and psychological effects—or, more often than not, a combination of all three. Two out of every three stroke patients leave hospital with a physical disability and/or problems with speech, communication and thinking and, of course, their emotions and mental health.

Stroke survivors often say that people will tell them, “Ah, you don’t look like you’ve had a stroke.” That is a result of a lack of awareness of the hidden effects of stroke. Those are not all physical; the psychological effects can often be as or more debilitating to the individual.

Last month, the Stroke Association published a report, “Keeping Stroke Recoveries in Mind”, that looked specifically at the hidden effects of stroke, focusing on the psychological and emotional impact on a person after their stroke. The findings mirror those of a similar report that was published 10 years ago. The main message was that psychological and emotional recovery is not viewed on equal terms as physical recovery post-stroke. The Stroke Association spoke to more than 100 stroke survivors; 87 per cent of them want equal access to physical and psychological care in their rehabilitation. However, only 25 per cent report receiving enough psychological and mental health support. Ten years has passed, and the research continues to tell us the same thing, but everyone’s experiences are not improving.

The Scottish stroke psychology forum has supported the Stroke Association with that, and it has provided a tiered model that allows everyone involved in stroke care to be trained and supported to deliver psychological care for stroke patients. We all know about the tight financial constraints on the health budget, so that tiered approach to delivering psychological care will help to alleviate future pressures. By ensuring that people get the emotional and psychological help that they need at the beginning, the long-term health and social care costs will be reduced as they start to rebuild their lives earlier.

There is a strong evidence base to support that. A lot of research that has looked at the economic benefit of providing early intervention has been carried out. All of that has found a strong financial saving in the long term. That is a solution to current problems that stroke patients face and also for the overall health and social care budget.

I was also grateful to hear from Paula, from Glasgow, on that topic at one of our cross-party group meetings. She spoke openly and honestly about the psychological and emotional impact that she faced after her stroke, which she had a year ago. She explained how, overnight, everything changed for her and she went from being a wife, working full time and enjoying many outdoor activities to not being able to do everything that she used to get such enjoyment from. She started to lose control of her emotions and her stroke added a heightened sense of anxiety like nothing she had experienced before. After some time, she spoke to her consultant, who informed her that people are often affected in that way after a stroke, but that there are inadequate resources to cope with the number of people who need support.

With support from her family and empathy from health and social care staff, Paula has made a good recovery. Unfortunately, that is not the story for everyone. We all have a role to play in changing the narrative from stroke being a condition that affects people only physically to one that affects the whole person.

I encourage all members to speak to stroke survivors and their families in their constituencies and regions about the mental impact that stroke has had on them, as it will absolutely open their eyes to the way in which people’s worlds have changed. Grief is a way of describing the feeling that several stroke survivors have described to me. It is not confined only to people who have lost someone to stroke; it extends to those who have lost what their previous life was through any condition, from paralysis to aphasia. The survivors and their families often have to pick up the emotional pieces, muddle through and try to make the best of it. I hope that, through this debate and other work, we can put a focus on the mental health support that many survivors need.

I am keen to support the Scottish Government to drive forward improvements in this area, and I was pleased by the publication, earlier this year, of “A Progressive Stroke Pathway”. Although that document is vast and wide ranging, it includes a focus on psychological care for stroke survivors, which is encouraging. However, we must act now to ensure that that translates to changes for patients. Through early intervention, we can give people the chance to rebuild their lives and save health and social care services a significant amount of money over the long term.

I hope that the cabinet secretary will be able to update us on when the revised stroke improvement plan will be published, and that the Government will give appropriate resource to the plan. I hope that the cabinet secretary will also ensure that stroke care across the 14 health boards is consistent, so that everyone receives the same level of care.

I repeat my thanks to the Stroke Association and all those stroke survivors who have given their time and their effort to the cross-party group, and I look forward to hearing everyone’s contributions.

17:28  

I thank Gillian Mackay for bringing the debate to the chamber. I know that the subject is very emotive for her—we talked about that yesterday—and I pay tribute to the work that she has done in this area. My thoughts are with you, Gillian. I also thank Katie MacGregor from the Stroke Association for her briefing for tonight’s debate, which is comprehensive, extensive and as informative as ever.

I, too, am a member of the cross-party group on stroke. My dad died from vascular dementia about four years ago, after a series of TIAs. When he lost his ability to speak about three years ago, that impacted on his mental health and on my mental health and that of the rest of the family.

There are 2,000 stroke survivors in East Lothian—that is about one in 50 adults; 12,500 people have been diagnosed with high blood pressure—that is one in eight adults; and around 1,800 people have atrial fibrillation, which is a heart condition that causes an irregular heartbeat and raises the risk of having a serious stroke.

As Gillian Mackay mentioned, in March 2022, the Scottish Government published “A Progressive Stroke Pathway”, which was produced by the national advisory committee for stroke. That document sets out a vision of what stroke care in Scotland should be. Early next year, the Scottish Government is due to publish a revised stroke improvement plan, which will be based on recommendations that are made in the progressive pathway report.

“A Progressive Stroke Pathway” states:

“Psychological care should be available to all patients in line with local delivery plans.”

I will touch on that later.

The Stroke Association report “Keeping Stroke Recoveries in Mind” found that stroke survivors are still not receiving the psychological support that they need. The report calls for the model that has been developed by the Scottish stroke psychology forum to be included in the upcoming stroke improvement plan and given appropriate financial and workforce resource.

The report found that 87 per cent of stroke survivors want equal access to physical and psychological care in their rehabilitation but that, at the moment, only 25 per cent think that they are receiving enough mental health support. Ninety-four per cent of people said that they experienced a mild impact on their psychological and emotional wellbeing after their stroke; 75 per cent of respondents reported that they did not get enough support in hospital; and 68 per cent of people did not feel that they got enough support once home from hospital.

Why is it so important to give greater emphasis to emotional care? Stroke is the biggest single cause of adult disability in Scotland. Two out of every three stroke patients leave hospital with a physical disability, and people need support to come to terms with this huge change in their life. People carry the impacts of their stroke with them for the rest of their lives. Even for people with mild disability or those who make a complete physical recovery after a stroke, fatigue and psychological issues can hugely affect their quality of life.

Emotional impact has been included in the two previous stroke improvement plans but, as I said, issues persist. In the 2022 Scottish stroke care audit, the category relating to psychological support was the lowest performing of all the stroke improvement priority categories. The Stroke Association 2019 report “Lived Experience of Stroke”, which remains the largest-ever UK-wide survey, found that nine out of 10 stroke survivors reported experiencing at least one cognitive effect, which was the same figure as for those who reported experiencing at least one physical effect.

Three quarters of stroke survivors experienced a change in their mental health—they might develop depression, anxiety or suicidal thoughts. By 2035 the incidence of stroke in Scotland is expected to double compared with 2015 figures. When a physical illness such as stroke is accompanied by mental illness, that worsens outcomes such as life expectancy.

I again thank Gillian Mackay for bringing the debate to the Parliament. I also thank the Stroke Association for all the work that it is doing and for its briefing. The key point is that we all need to work with health boards to ensure that we keep stroke recoveries in mind. I know that the delivery of the service varies in different parts of the country. I have been trying to speak to my local health board on the issue and I am struggling to raise issues in that regard. We need to ensure that stroke survivors receive the psychological support that they need, as Gillian Mackay has highlighted.

17:32  

I thank Gillian Mackay for bringing the debate to the chamber.

Having a stroke is a life-changing event. The condition affects around 10,000 people every year in Scotland, and more than 128,000 people in the country are living with the long-term consequences of their stroke. The Stroke Association report says:

“You can’t always see the damage a stroke causes. It’s hidden inside. But we know it’s one of the biggest issues for people and their families. Emotional and psychological wellbeing for someone after a stroke is just as important as their physical recovery.”

The sense of loss and grieving for the life that has been so abruptly altered is the first and most difficult challenge that a stroke victim will need to overcome. In the simplest of terms, a stroke victim will need to mourn the person they were before they can become the person they will be. I speak from experience. In February 2021, when we were in lockdown again, my husband collapsed from a haemorrhagic stroke and went through surgery to reduce the bleed on his brain. He had no idea of what was happening and no concept of the situation. He was in intensive care in Edinburgh and I was 50 miles away at home when depression took hold. He would not eat; he would not engage in any way; he did not want to know.

Usually, I would have been able to visit and support him and simply hold his hand but, because of the extraordinary circumstances brought on by the pandemic, a psychologist’s input was requested and the doctors feared that he would not recover, even though the operation was a success. Over the course of many difficult phone calls, I had to try to describe him—his likes, his dislikes, his goals and his dreams—and even though I had no idea whether he would be able to experience those things again, I had to make sense of what little talk they had managed to pick up from him. His journey back to health was won in those conversations and that psychological intervention.

As members will be aware, not all strokes have the same outcomes, and my husband’s experience is an example of that. Most people think that a stroke is a condition that affects someone’s physical health and, of course, those consequences are extremely serious. As a result, however, it is assumed that the care ends when the physical symptoms end, and that assumption contributes to people not receiving the psychological care that they desperately need.

The Stroke Association consulted more than 100 stroke survivors, and the results were staggering. In fact, I will repeat Paul McLennan’s comments on this point. The association reported that 94 per cent of people said that they experienced an impact on their psychological and emotional wellbeing after a stroke, while 39 per cent reported severe impact on their mental and physical health. Three quarters of respondents said that they did not get enough emotional support in hospital, and 68 per cent felt that they did not get enough support when they went home.

The battle to truly survive a stroke is won or lost on the basis of what the victims believe they can achieve, but that is not being catered for, and we must do better. I have concerns that immediate stroke care is moving in the wrong direction nationally. Members will be aware of the set of standards for national stroke care, which is often referred to as the stroke bundle and includes access to a brain scan within 12 hours as well as access to aspirin as a blood thinner within a day of arriving at hospital. Meeting those targets for care gives someone the best chance of recovery; NHS Fife and NHS Forth Valley in my region are meeting those standards, but Scotland as a whole is not.

Moreover, clinicians are raising concerns about funding reductions to the thrombectomy surgery programme. A thrombectomy saves lives, reduces damage to the brain and increases the chances of a fuller recovery, and it also saves £47,000 per person in on-going treatment. That seems to me like a win-win, and I urge the cabinet secretary to consider that issue again.

I believe that the bedside psychological assessment and one-to-one care that my husband was able to receive saved his life—just as much, in fact, as the surgery did two weeks earlier—and those who provided that care will have my unending support and thanks.

I strongly support the motion.

17:36  

I congratulate Gillian Mackay on securing this members’ business debate on the Stroke Association’s report, “Keeping Stroke Recoveries in Mind”.

As we know—and as we have heard from personal testimony—having a stroke is a life-changing event. Within a matter of minutes, a stroke impacts not just on a person’s physical health but on their sense of self, too. It often comes with a loss of independence and agency, and it can be a very difficult thing to adjust to, for both survivors and their families.

That is why this report is so important. Most of the focus is usually on physical recovery from a stroke, but that is just one aspect of recovery. Research undertaken by Chest Heart & Stroke Scotland found that people living with stroke conditions are at a significant risk of poor mental health, and the Stroke Association’s report points out that 95 per cent of stroke survivors report a change in their mental health as a result of their stroke.

I did not realise this, but apparently there are 1,800 stroke survivors in Dumbarton, and many of them have told me that they do not feel adequately supported in dealing with their mental health. The report that we are discussing helpfully outlines the important role that NHS Scotland can play in ensuring that the mental and psychological needs of stroke survivors will be met.

Feeding good psychological care into clinical practice is not beyond us. There can be a holistic, needs-based approach to stroke care, but that is currently missing in the service. It can be achieved by educating and training staff and ensuring that they are supported in their roles to enable them to take on the relevant additional tasks.

The 2022 report on the Scottish stroke improvement programme, which was published earlier this year, showed that too many stroke patients did not get the care that they needed over the past year. I appreciate that there was a pandemic, but the challenges pre-date Covid. I think that we can all agree that healthcare staff have been incredible, working around the clock to look after patients; however, they are exhausted, and the system is failing them, too. We all acknowledge that improvements in stroke care can and should be delivered, but they cannot happen without ensuring decent pay and safe staffing levels. Healthcare staff are already at breaking point, and it is important that, when we ask more of them, we support them properly—and that that goes beyond warm words. We actually need to act.

It is also important to note that there is significant variation between health boards in performance against stroke care standards. We should be able to have the same standards—but better standards—wherever we are in Scotland, and it is vital that, when seeking to address psychological stroke care, we do not replicate that same trend of variation.

Stroke care, if it is to be effective, should extend beyond a stay in hospital, given that 68 per cent of people say that they did not feel that they got enough support once they were at home and away from hospital. At the last election, the First Minister pledged to support the roll-out across the country of Chest Heart & Stroke Scotland’s hospital to home service; indeed, that is something that we would all support. The service already offers support to 38,000 people who are living at home with chest, heart and stroke conditions, and I hope that the Scottish Government will do more to honour that commitment, as the service is not yet provided across all 14 health boards.

Finally, I hope that those issues will be addressed by the Government to allow health boards to appropriately resource and deliver the progressive stroke pathway that we all agree is desperately needed.

Thank you, Ms Baillie.

I now call Alexander Burnett, who will be the last speaker before I ask the minister to respond. You have around four minutes, Mr Burnett.

17:40  

Thank you, Deputy Presiding Officer. I thank Gillian Mackay for securing this important debate. It is important because—as we heard—the Stroke Association estimates that 128,000 people in Scotland are living with the effects of a stroke. The number in my Aberdeenshire West constituency alone is 1,400.

Stroke is a leading cause of death and long-term disability in Scotland, and for many survivors there will be lifelong emotional and psychological effects. A key call of the Stroke Association’s 2013 report, “Feeling overwhelmed: The emotional impact of stroke”, was for improved emotional support, but shockingly, almost a decade later, its recent report has highlighted the fact that nothing has changed.

A constituent of mine, Eric, who lives in Aboyne, has been an avid campaigner since he suffered a stroke in 2004. He has written a book, “Man, Dog, Stroke” and he helps to run an exercise class for stroke survivors in Deeside. Eric knows all too well that people who have the potential for more physical and psychological recovery are not receiving support and are having to go private to get better quality of life.

Psychological support has been overlooked: only a quarter of stroke survivors are receiving enough mental health support. The results are just as appalling as they were almost a decade ago.

That care should start as soon as someone is diagnosed with a stroke, and the Stroke Association’s key recommendation is to improve psychological care and implement the national service model of psychological care in stroke services.

However, unfortunately there just is not the appropriate workforce to ensure that that will happen. There are fewer than eight full-time equivalent psychologists in stroke services in Scotland, and “A Progressive Stroke Pathway” highlights the fact that important work is needed. However, in order for each health board to introduce an effective plan, the Scottish Government needs a stroke-specific workforce.

I also note that there is a range of other delays in access to treatments for stroke survivors. Thrombolysis door-to-needle times are variable across Scotland, and treatment times have not been improving, despite that being an urgent time-sensitive treatment at the onset of stroke. Progress on thrombectomy services is also proceeding too slowly, even though it has the potential to reduce the likelihood of disability for hundreds of survivors each year. It has been available for suitable stroke patients elsewhere in the UK for some time.

The pandemic led to a lot of changes in the health and social care system, which will undoubtedly have had an effect on the treatment of stroke survivors. People might have delayed seeking help or have had to wait for increasingly longer times for treatment, which will have worsened their condition. We also know that delayed discharge from hospital is increasing and that there is a lack of social care available to provide the necessary support to survivors.

However, as we have heard today and in so many other health debates, issues with psychological care for stroke survivors were an issue long before the pandemic. No health board in Scotland has a staffing level that meets clinical guidelines, and psychological care is a postcode lottery. That is completely unacceptable. Therefore, I urge the Scottish Government to ensure that stroke survivors get the cognitive, emotional and psychological help that they need.

Thank you, Mr Burnett. I call Humza Yousaf to respond to the debate. You have around seven minutes, cabinet secretary.

17:44  

Thank you, Deputy Presiding Officer. First, I thank Gillian Mackay for securing this important members’ business debate, and I thank the Stroke Association for providing a briefing to elected members across the chamber.

We have members’ business debates in the Parliament for a number of reasons, as members are acutely aware. Sometimes, the debate is to highlight an excellent project. Sometimes, the debate is to rightly praise an individual in a member’s constituency or region. Sometimes—as is the case for this evening’s debate—it is to put the spotlight on an issue that does not get enough national airing.

I think that Gillian Mackay has done that tonight. As she and others—including Roz McCall, who made an excellent contribution—said, when people think about stroke, they often think about the physical impacts of a stroke. As Roz McCall rightly said, the physical impacts and impairments that a stroke might cause are not inconsequential, but less is said about the psychological impacts, so I am very grateful, first and foremost, to Gillian Mackay for shining a spotlight on the issue through her motion, and to all the members who have contributed to the debate.

Gillian Mackay spoke about her experience of stroke with her family. She has done that on a number of occasions in the chamber—each time very powerfully. I am also grateful to Roz McCall for sharing her experience in relation to her husband. I wish him all the very best on his recovery journey. My goodness! How difficult that must have been for Roz McCall and her family. It would have been difficult at any time, let alone with the legal restrictions that were in place at the time. She owes us nothing, but her sharing of that story with the Parliament was very powerful and insightful.

I will focus a large part of my remarks on the issue of psychological support and will try to address some of the issues that have been raised by fellow elected members. Addressing the mental health and cognitive impacts of stroke is absolutely a priority for the Government. We are in the midst of developing a new mental health and wellbeing strategy. We should not and will not ignore the long-term mental health impacts of conditions such as stroke. We are absolutely committed to ensuring that patients who have suffered strokes receive the best possible care to enable them to live longer, healthier and more independent lives. Key to that is ensuring that we meet their mental health and cognitive needs as much as we meet their physical needs.

We will liaise as best we can—I certainly try to do this—with people who have been impacted by stroke, whether they have lived experience of suffering a stroke or are a member of the family of someone who has suffered a stroke. We will do that through the national stroke voices group. From listening to the experiences of people who have been affected by stroke and from the findings that the Stroke Association has presented, it is clear that more can be done to address the psychological consequences of stroke.

As several members have mentioned, the Stroke Association’s report references “A Progressive Stroke Pathway”, which was developed by the national advisory committee for stroke, and the recommendations that it makes regarding psychological care. In response to that, the annual reviews of NHS boards’ stroke services will now include a requirement for boards to demonstrate their provision of psychological support for people who have been affected by stroke, in line with the national model of psychological care for stroke. That will ensure that the psychological impacts of stroke are at the front of the minds of our NHS chairs and chief executives when those reviews take place.

Boards will be asked to implement a documented programme for promoting awareness, screening and treatment of the psychological consequences of stroke. Psychological care should be available to all patients who require it, and there should be documented evidence of a clear referral pathway for accessing psychological services. I take the point that a number of members made about their belief that that is not done in a consistent manner. That is why we have set that requirement in relation to the annual reviews. We want to achieve consistency right across the board.

We are also asking boards to ensure that anyone who has suffered a stroke is offered a formal review six months after their stroke event. Support needs to be provided immediately, and we need to make sure that that is followed up.

We know that the psychological consequences of stroke do not always manifest themselves immediately. We have heard that from people who have suffered a stroke and from family members. We hope that that approach will ensure that individuals are able to receive the psychological care that they need when they need it. The provision of psychological care and six-month reviews will be reported in all future Scottish stroke improvement programme annual reports.

I want to turn to a couple of issues that have been raised that I have not covered. Gillian Mackay asked about the stroke improvement plan and when it will be published. I will be happy to update members on that; we are in the midst of that discussion. Obviously, we are under considerable financial constraints, but we want to ensure that there is, when we publish that plan, the consequential funding that will be required for it. I will ensure that we update Gillian Mackay and any other member who has a particular interest.

Roz McCall, Alexander Burnett and other members made an important point about the funding of life-saving thrombectomy services. The point was well made, and I do not disagree with it, but I say to Roz McCall and Alexander Burnett that we are under extreme financial constraints. I will not stray into the reasons for and the politics around that, but really difficult decisions have to be made to deal with high inflation costs and the high pay deals that we have to offer, given the high inflation costs that our workers currently face, which is having an impact on service delivery. However, it should be acknowledged that there is an increase from the previous financial year of almost 20 per cent in forecast thrombectomy expenditure for the current financial year. We will continue to invest in thrombectomy services, because we know—I know as health secretary—their value.

I absolutely accept that delivery of the stroke care bundle is crucial to provision of high-quality stroke care. That is very much emphasised in “A Progressive Stroke Pathway”. Monitoring of performance against the stroke bundle standards through the Scottish stroke care audit allows us to identify where gaps exist. Members will not hear from me denial that there are gaps. There are challenges in delivery of high-quality stroke care and in where we need to implement quality improvements.

I am aware that I am straying slightly over time, Deputy Presiding Officer, but I want to emphasise a final point about the Scottish stroke care audit, which has been raised by a number of colleagues including Paul McLennan and Jackie Baillie. Jackie Baillie was right to point out that it is clear that there are things that we need to improve on. There has been improvement in some areas—for example, in brain imaging and aspirin initiation—but there are many other areas in which we have seen standards slip. That has been largely down to the pressures of the pandemic, but Jackie Baillie was right to mention that there were challenges pre-pandemic, too. She and everybody else in the chamber have my assurance that the psychological support that is needed for people who suffer a stroke is at the forefront of our minds.

I thank Gillian Mackay once again for bringing this important issue to the chamber.

Meeting closed at 17:53.