Half a Million Scots with Debilitating Health Conditions Missing Out on Rehabilitation 05 October 2023 New research from Chest Heart & Stroke Scotland reveals less than half of people it represents are getting NHS rehab People living with Scotland’s biggest causes of adult disability say vital services like physio, stroke rehab and mental health services are not available to them The Chest Heart & Stroke Scotland survey of more than 1850 people reveals a crisis in rehabilitation support for people living with Scotland’s biggest causes of adult disability and ill health Failure to provide the treatments people need is leading to a mental health crisis – with more than 40% of people saying their health condition impacts their mental health, self-confidence and causes anxiety and stress A new One in Five research report from leading health charity Chest Heart & Stroke Scotland has revealed a mental health and rehabilitation crisis facing the one in five Scots that live with chest, heart and stroke conditions and Long Covid. The research indicates that of the 1.1 million people in Scotland living with chest, heart, stroke or Long Covid conditions, less than half (45%) had accessed NHS rehab services. The research, which is based on a survey of more than 1850 people carried out this summer, also revealed: Nearly half (47%) of respondents say there was support they needed but couldn’t access – physio, stroke rehab and mental health services were the most commonly cited 24% of people said they were not referred to rehab at all Almost two thirds (65%) experienced some kind of difficulty in accessing services One in seven people (14%) said that waiting lists were a barrier to them accessing the services they need More than two in five (43%) of people said their condition impacts on their mental health, 49% said their condition has affected their self-confidence, and 44% said it causes them anxiety and stress Chest Heart & Stroke Scotland is calling for the Scottish Government to improve services for people with long-term conditions and make sure they get the rehabilitation they are entitled to. The Scottish Government’s National Advisory Board for Rehabilitation has stated that by the end of 2025 “all adults who require rehabilitation will have timely access to the right information and services”. CHSS’ research shows that they face a significant challenge in closing the gap in order to meet that target. We are committed to dramatically increasing the number of people we deliver services to over the next five years to 150,000, reducing the pressure on the NHS. Jane-Claire Judson, Chief Executive of Chest Heart & Stroke Scotland commented: “The fact that so many Scots are being denied access to vital rehabilitation services is extremely distressing. “Our latest One in Five research clearly shows that people living with chest, heart and stroke conditions and Long Covid are in crisis. People are leaving hospital or receiving a diagnosis and they are scared and feel alone. They need to trust they will get the help they are entitled to so they can begin their recovery journey and get back to the life they love.” CHSS is launching phase two of its No Life Half Lived strategy to increase support for people with its conditions. Its supported self-management and community recovery model helps people to live with and understand their condition, improve their overall health, get back to work, hobbies, and interests and ensure they need fewer NHS services. The research found that people who have accessed CHSS services rated their health and wellbeing higher than those who hadn’t. Jane-Claire Judson said: “CHSS is there to support people to stay healthy and well at home for as long as possible. We are committed to dramatically increasing the number of people we deliver services to over the next five years to 150,000, reducing the pressure on the NHS. But when people miss out on the first step on their recovery journey – NHS rehab – that makes our job so much harder. “We’re doing our bit, it’s only in working together that we can achieve this. We are calling on the NHS and Scottish Government to keep their promises to those living with long-term conditions and make essential services easily and immediately available. “Together we can ensure that people with chest, heart, stroke and Long-Covid conditions can life full, happy lives. Together we can ensure there is No Life Half Lived in Scotland”. Andy’s story Andy Cudden, 60, lives in Knightswood, Glasgow, with his wife and two young children. As assistant museum manager at the city’s Kelvingrove Art Gallery and Museum, Andy has been living with the symptoms of Long Covid since 2021. Struggling to access support, Andy’s mental health suffered alongside his physical health. Fortunately, Andy was able to access help through Chest Heart & Stroke Scotland, attending the charity’s online functional fitness, breathing and balance classes and calling its Long Covid advice line. Andy has been living with the symptoms of Long Covid since 2021 Andy developed Covid-19 in October 2021. While his wife and kids quickly recovered, he did not and began to struggle with his breathing and with severe fatigue. Feeling physically exhausted and wondering if he’d ever recover, he also began to feel mentally exhausted and anxious, worrying about his job – he had now run out of sick pay – and how he’d provide for his family. Speaking about his experience, Andy said: “I’d joined the CHSS Facebook support group for Long Covid and someone mentioned the Advice Line. I had to make the first call and I spoke to Pamela. She was so nice and helpful – it was a relief speaking to someone who understood what I was going through and was able to reassure me I wasn’t alone. She called me regularly and promised me she’d stay in touch, and she did. “The functional fitness classes gave me something to look forward to every week. Frances, who takes them, is so nice and so caring. She’d phone me after a class or before and tailor the class for me. “If it hadn’t been for this service, I don’t know where I’d be. I was at a point where everything seemed to be collapsing around me, and I didn’t have the mental ability to sort things out. I haven’t fully recovered, and I don’t know if I ever will go back to how I was. “However, in a lot of ways, going to these classes online and in person saved my sanity. Those classes put me on a pathway that helped me get better. CHSS was there when no one else was, and I was astounded at how lovely and caring everyone was.” Margaret’s Story Margaret Walker, 60, lives in Irvine, Ayrshire, with her husband, Jim. Since September 2021, she has had three mini strokes – known as a transient ischaemic attack or TIA – preceded by two silent strokes. After taking part in Chest Heart & Stroke Scotland’s online functional fitness and balance classes, Margaret has completed a self-management course offered by the charity to help her deal with the effects of the stroke. She has also trained to become a community services volunteer with CHSS. Margaret has completed a self-management course offered by the charity to help her deal with the effects of the stroke. Margaret said: “Chest Heart & Stroke Scotland stepped into my life at the time when the NHS stepped back. I would not have recovered as well or looked forward to what life has in store for me if they hadn’t been there to encourage, help and support me. “Things changed the moment when I looked at the leaflets the CHSS stroke nurse had given me. I got help from the charity’s Advice Line, then was able to join the online functional fitness and balance classes. Then I learned about the self-management course, which has been the most important step on this journey. “The self-management course really helped me make a lot of sense of what I was feeling. I had a lot of anger that I couldn’t control, and I was really affected by noise. And no one had told me before about stroke fatigue. I was sleeping all day and for more than 12 hours every night. “What was great about the course was that you could participate as much or as little as you wanted. We were asked to set small goals, and they were a good encouragement. I also learned to pace myself, and that was another turning point. “Now I’ve done my volunteer training and I hope I can help other people who have gone through stroke like me to find their confidence again. “I still have something to contribute. I still have a lot of living to do. Being part of CHSS is the best possible way to do that.”