 The next and final item of business is a member's business debate on motion 10702 in the name of Clare Adamson on the complex regional pain syndrome awareness month. The debate will be concluded without any questions being put, and I would ask those members who would wish to speak in the debate to please press the request to speak buttons and I call on Clare Adamson to open the debate about seven minutes, Ms Adamson. Thank you very much, Presiding Officer. I'd like to thank my colleagues from across the chamber who will be speaking this evening and to all those who supported the motion. CRPS, complex regional pain syndrome, is a rare neurological condition that I presume many here will never have heard of. To the people told prizes, Presiding Officer, I wish that that were the case for me. However, my son, Aiden, has CRPS. He is 26 on his first steps of a professional career that he loves. I haven't ever spoken about him before. I felt that it would be an intrusion into his privacy when he was younger but I have his blessing this evening. Aiden loved rugby. He was a Dale Dragon from the age of five and dedicated, talented hooker. When he was in first year at high school, he broke his wrist on the rugby field. Traumatic enough for any child or their parents, especially since it involved an operation and a pin, but we thought that it was mechanical, fixable, not vetting, not life limiting. However, we were wrong. Aiden complained of pain following the injury, despite the fact that he continued to go on with rugby karate and continued to play clarinet at school. He is a talented musician and, at that time, hoped to study at the Conservatoire. Months after the stroke, he came off and wouldn't heal. He came home with a strange swelling on his knuckle. The school had had the foresight to draw a circle round it. It was like a grape on his knuckle, to which Aiden had added a smiley face. Our GP saw him and, within a few hours, he was in A&E with a suspected spider or insect bite or worst case, sepsis. That was the start of a medical pathway that involved multiple disciplines, X-rays, MRI scans, ups and downs, including a further visit to A&E, where he was, in my opinion, and his own, coerced into saying that possibly at some time in the school day someone may have bumped him in the corridor that would have led to the swelling that was on his hand at that time. It didn't happen. He hadn't had an accident. A further low point was when an orthopedic consultant suggested to him that he was having bad dreams at night and banging his wrist on the wall while asleep. Can you imagine? Can you imagine this teenage boy felt no one understood or believed him? We, of course, tried everything, physio, tense machines, acupuncture, wax baths and icing. Icing was frequently recommended by clinicians and physios, but it's one of the worst things that he can do for someone suffering with CRPS, as I'm sure you will hear from others this afternoon. Eventually, he saw a pain consultant after waiting two years from his ferro. He was diagnosed in his first visit and, while his pain and challenges remained the same, the sense of relief and validation that he felt was overwhelming. Mitterbox treatment with appropriate neurological treatment foliage helped a little, but there is no cure and no treatment for CRPS. We need more research and much, much more awareness into this condition. Ada isn't a relatively good place. He couldn't put into practice into achieving his goals in the clarinet and base clarinet, but he has become a professional musician. Nonetheless, he won the music prize in sixth here. I studied a music degree and is now on his future pathway. This was despite being told by a guidance teacher after his standard grade results that had been a disappointment and he should have done much, much better and got all ease. His dad and I were so very proud of him. Unknown to the teacher, despite the condition being disclosed, I had had to sit up with him in tears at night begging me to cut his wrist and hand off. That may sound like a teenage drama until you understand that, for CRPS sufferers, elective amputation is a common route. The first time we saw it reported in the news was in 2019 when Helen Stone, a promising Welsh athlete, had her leg amputated at 22. It followed a kayaking accident when she was 16. CRPS is usually, but not exclusively triggered by an injury. CRPS has always been in the news recently through the Netflix documentary Taking Care of Maya. The title coming from Maya Lewakilowski's mother's beta suicide note after she was accused by clinicians of moonshines by proxy and her daughter was taken into care in the US. A tragedy in the true sense of the word with a family losing a loved one in horrific circumstances and a Florida court has just awarded damages against John Hopkins children's hospital in St Petersburg of £261 million to the family. This documentary has raised awareness and understanding of CRPS. There are a number of charities supporting CRPS, including CRPS UK and Burning Knights. Through Burning Knights, I have met fellow pupil of Aden's school, just a few years older than him, Keira McAdam, who is also on a professional educational role and is a champion fundraiser for them. Her own experiences resonate with Aden's as she grappled with CRPS as a teenager and adult. Burning Knights held their annual conference in Scotland in 2022 and I was delighted to attend with Aden and I know what was a profound and inspirational experience for him to meet and talk with other young people also coping with CRPS. I also met in person Victoria Abbott-Fleming. I had been working with Victoria for a number of years and I was on a task to open and speak at their conference. Victoria was a successful barrister until a fall at work in 2003 triggered CRPS. During this time, she has had the conditions, she has needed both her legs to be amputated above the knee, not through elective surgery, as I mentioned earlier, but due to life-threatening aggressive and extreme symptoms of CRPS. You can read Victoria's story on her Founders' page on the Burning Knights website. Throughout November, CRPS Awareness Month, the Burning Knights have had a daily tweet informing about CRPS. It is incredibly informative and I word to anyone who is interested in learning more about the condition to look at November's and indeed their tweets in general. Just about managed to get through this without having a cry, but I have cried about CRPS in this place. At an event here in the Parliament, I met a truly inspirational professor from Glasgow University, Dr Jennifer Corrins, who was here with a brain—not just an incredible one, she had herself, but a plastic brain—and I know that many people got the photograph taken in the garden lobby and may remember her. She is an expert in chronic pain, and when I mentioned Aiden's diagnosis, her first question to me was, did he have an accident? I knew she understood. No explanation, no having to have the same questions asked, just to see someone who understood what I had gone through. I am just a parent, I am not a sufferer. Today, Minister, it is about raising awareness that it is work to be done in GP surgeries in A&E, in our schools to foster understanding and empathy. There is also need for plain condition nurses and consultants, and access to them in the waiting times need to be improved, especially for young people. For Aiden, Kira and Victoria, and all those across the globe, living day and day out with this condition, you are all heroes in my eyes. I thank my friend and colleague Claire Adamson for bringing this important debate to the chamber tonight. For her personal interest in raising awareness of complex regional pain syndrome, her story was very moving, and I know that it must have been very difficult to tell, but I wish Aiden and her son very well. I have a confession to make. I have been a co-convener of the cross-party group on chronic pain since 2016. Until Claire Adamson brought this condition to my attention and to the group's attention, I was unaware of CRPS. Why debates like this and awareness raising are so important, because until there is a greater understanding of the condition, sufferers will not benefit from research and, indeed, medical knowledge that they deserve. As Claire Adamson's motion states, CRPS is a debilitating chronic disorder, mostly affecting the limbs, which is characterised by severe pain, pathological changes of bones, joints and skins, swelling temperature and colour changes, and motor dysfunction, which can cause people to experience persistent burning, severe and debilitating pain. The three clinical stages of type 1 complex regional pain syndrome are acute, sub-acute and chronic. The acute form lasts approximately three months pain. Often burning in nature is one of the first symptoms that initially limits function, and chronic pain is a lifelong and debilitating condition. As Claire outlined, the condition can develop after an injury, surgery, stroke or heart attack, and that pain is often very much at a proportion with the severity of the initial injury. It is truly an awful condition to be afflicted with. At her recent meeting of the cross-party group on chronic pain, the founder of the UK-wide charity, Claire referenced burning nights. Victoria Abbott Fleming gave a moving account of her condition. As Claire Adamson said, Victoria is a barrister. She was a healthy young woman until 2013, when she experienced an accident at work. She is now a double amputee due to the severity of her CRPS. Burning nights is a small, not-for-profit charity that does an amazing job raising awareness of the condition and is a great source of comfort and advice for sufferers. Shortly after being elected in 2016, I was a member of the Petitions Committee here in Parliament, and one memorable petition was to raise awareness of sepsis at that time. A potentially fatal condition still is, but at that time it was not universally understood or acknowledged. Following the petition, the Scottish Government mounted a successful awareness campaign, and much more is known about sepsis today. I sincerely hope that this can be the outcome for CRPS sufferers. As ever, hearing from someone with experience of any illness, such as Claire's account of what her son, Aidan, is going through, it is the most powerful way of understanding it. That goes for the many brave and literally long suffering members of the chronic pain cross-party group, many of whom have battled to get the treatment that they need. I hear about their suffering once every three months, but they have to endure their pain every day, and my heart goes out to them. Last month was CRPS awareness month, where the chronic pain community and their families and supporters around the world came together to help raise awareness of the condition. Slowly, with their determination, that is beginning to happen. As part of this initiative, the colour of the world orange day, as it was called, saw businesses, town halls and landmarks change their lights to orange in support of people living with CRPS. The volunteers and organisers of CRPS UK and the campaign group Burning Knights' CRPS support should be praised for their efforts, the great efforts to raise awareness of this little understood condition. If this debate helps to open the gateway to more understanding and research into CRPS, then time spent in this chamber tonight will have been well worth it. I thank Clare Adamson again for bringing it to the chamber, and I wish her son, Aiden Well. I thank you, Ms Mackay. I now call Annie Wells to be followed by Carol Mawkin. I thank you, Presiding Officer, and I just need to start off by saying thank you very much, Clare, for bringing this to the chamber. I did not know much about this until I looked into it a wee bit more, but it was a truly emotional, personal and brave contribution that you made. I wish yourself, your family and your son, Aiden Well. CRPS is an uncommon neurological disorder, one that plagues those who have it with chronic pain that, while possible to affect the whole body, it has felt mostly in the limbs, as we have heard so far. It is believed that 16,000 people across the UK are suffering from this poorly understood condition, despite being medically recognised in some form for more than 150 years. The condition can notably affect anyone regardless of age and can, as we have heard, be brought on by an accident or an injury. While, according to NHS Scotland, CRPS often improves incrementally over time in some people in others' pain last years, that pain can often be extremely intense and debilitating, affecting everything from motor functions to the overall quality of someone's life. Because of a limited understanding and complexity surrounding CRPS, treating it requires a multidisciplinary plan. According to NHS Scotland, there are four main types of treatment options, typically involving multiple physicians due to CRPS's complexity. Those are psychological support, pain relief, physical rehabilitation and self-education and management. While not a complete solution, treatments that are available today offer some relief as understanding and research surrounding CRPS continues to improve. Raising awareness of CRPS is key to better understanding the disorder and improving the quality of life for people that it plagues. As set out by burning nights, individuals living with CRPS should follow the Royal College of Physicians guidelines. As we have also heard, each year November is CRPS Awareness Month, something that has been celebrated in this Parliament for years. Likewise, there is no better place to help shed light on this disorder than here at the Scottish Parliament. Apart from helping today's awareness, let me also take the opportunity to highlight the wonderful work performed by volunteers and people working across Scotland. This also extends to groups such as we have heard Burning Nights and CRPS UK in their entirety for the invaluable work that they do to offer community-orientated support. Groups such as those provide education, empathetic spaces and put patients at the heart of everything that they do. Not only are patients behind their work, but they are also actively led by them along with caregivers. That approach allows for those who suffer from CRPS to improve their own lives and others from first-hand experience. To close, CRPS is poorly understood and many people are not even aware of the disorder that exists. Despite that, treatment and support have been able to make a positive difference for some sufferers of CRPS. Keeping individuals with this disorder at the heart of treatment is crucial to any conversation that has been had on the topic. Patient-led consultations and community spaces are central to treatment approaches and increasing CRP awareness among the public. Once again, I would like to take this opportunity to thank Claire Adamson for bringing this to the chamber. I also thank Claire Adamson for bringing this to the chamber. For a heartfelt and honest contribution about the reality for patients and their families, it was well received. I appreciate that. On behalf of Scottish Labour, I mark complex regional pain syndrome awareness month, which, as we have noted, was marked in November, and I pay tribute to all those who work to raise awareness of CRPS and the impacts that it can have on individuals and their families. As the motion states, CRPS is debilitating chronic disorder, mostly affecting the limbs, which is characterised by severe pain with changes of bones, joints and skin, swelling, temperature, colour changes and motor dysfunction. Like other members, I was totally unaware of those effects and how the presentation was for individuals with CRPS. Those characteristics, as we have heard, are debilitating and are often not recognised as what I am picking up from the contribution from Claire Adamson and others. We know approximately about 15,000 people living with the condition across the United Kingdom. As Claire Adamson and others have done, I pay tribute to CRPS UK and Burning Knights, who are both registered charities in the UK and do tremendous work not only to increase awareness of CRPS but also to support those who are living with it and to help them to improve their lives through advice, information, briefings and to develop research in that really important area, which is what I took from a lot of the briefings that we so kindly got. We need to make sure that we are resourcing and looking at how we can research this for people suffering. We have heard that Burning Knights hold an annual conference to bring together those impacted in a more formal forum to discuss matters pertaining to the condition and CRPS hold regular events. As we have said in the chamber tonight, raising awareness and introducing the idea to people to think about this condition and look for the research is so important. What is really important and has come out tonight is that CRPS through the charities is helped by families and loved ones and often volunteers who are keen to promote the impacts of the disorder on individuals. The latter house is a key point that CRPS is so poorly understood that we need to have engagement from our clinicians to make sure that it is seen as an important area to research. I am keen to hear from the minister if the Scottish Government understands that and if it can see the need to progress research in this area for individuals and with the work of the charities and the families. I am sure that we can do that. I want to make one last point in my research. I often mention that allied health professionals as I worked in that area before. I know that they have been looking to come forward with ideas for research, because that multidisciplinary approach can be really helpful. They recognise that there was not enough research in the work that they did. They have put a lot of effort into doing that. Anytime I get an opportunity to speak with them, as I do often, I will see how that is going and what they have done. To close, I want to thank the NHS and the charities, but mostly I want to thank the patients and their families for being so committed to moving forward with this really poorly understood condition, but it is obviously a condition that causes such a lot of pain and distress to the families that are involved. I thank you again to Clare for bringing this to the chamber. I thank Clare Adamson for securing this really vital debate on complex regional pain syndrome, which he referred to as CRPS throughout the night. It is essential to recognise that CRPS can happen to any of us, yet it remains a silent struggle for so many people. I am grateful to be part of the debate to really help break the silence that surrounds CRPS and shine a light and the immense challenges faced by those who are living with the condition. I only learned this week, it seems like others were the same, that CRPS is one of the most painful conditions that we know of, that it is often triggered by a seemingly minor injury, such as a sprain, or when there is a bone fracture, or that it can even appear spontaneously with no known cause. I have heard the enduring chronic pain associated with CRPS, described as being much more painful than any initial injury, and that it is a pain so severe that it can be described as being burnt alive from head to toe. That is a quote and a really scary thought, like being burned alive from head to toe. In addition, CRPS causes pathological changes to the bones, along with intense swelling, heat and skin discoloration, as we have heard already, so it is no surprise to learn that those symptoms can disrupt daily life and affect overall well-being. One example that captured me a story was Ruby's story, a resilient individual diagnosed with CRPS in childhood, who faced a challenge in shifting symptoms during her time at university. Ruby's first couple of years at uni went really well, but then her pain escalated, and it reached the point where sitting upright for more than a few minutes actually became unbearable. Ruby's exciting university life put her out, and she had to leave her work placement and rely on essential support back at her parents' home. That is devastating, especially for someone who described themselves as a determined individual, and the impact on her mental health was really quite profound, not only due to the high level of pain that she was living with, but from losing the ability to do the everyday tasks that we so often take for granted. Presiding Officer, I also want to raise a point around the need to increase awareness about the condition. When hearing Ruby's experience, I was a bit taken aback by the misconceptions that were voiced by her peers. How lucky you are to rest at home. These are really unhelpful and undermined the intense agony that Ruby was enduring, so we do need to make sure that we have that compassion in mind as well. I also want to stress the significance of increasing awareness from a medical perspective. CRPS is a condition that is challenging to diagnose and treat. There is no specific clinical test for a definitive positive result, and patient symptoms can vary. The NHS UK website states that CRPS is, and I quote, poorly understood, with patient symptoms sometimes being dismissed, as we have heard already too. So it would be helpful, Presiding Officer, if the minister is able to reflect in any steps that the Scottish Government might take to help to raise awareness. I have been a registered nurse for 30 years. I have never heard of complex regional pain syndrome. Do you think that it would be worth exploring what the nursing universities do to raise awareness when they are teaching our future nurses? Yes, absolutely. I hope that we can hear something more than that tonight. In closing, Presiding Officer, I am also keen to put on record my thanks to Burning Knights and CRPS UK and others for raising awareness, but also for providing invaluable support in education and spearheading much-needed research into CRPS. Again, I want to thank Claire Adamson for a second time, for bravely sharing her own family experience of CRPS, and for bringing CRPS to my attention. I hope that tonight's debate brings CRPS to many, many other people's attention too. I thank Claire Adamson for not just bringing the debate tonight, but for sharing her personal story. Like Claire, I have probably never heard of CRPS before, but before 2010. My daughter was nine years old at that time, and, like Claire, I had never spoken about this before in public. She had a sports day. Nothing obviously happened. We didn't think that she got injured at all. Maybe she took a little bit of a tumble, but she was always kids of nine years old. They were always taking a tumble. The next day, she woke up with the most severe pain in her lower leg. Her foot was a little bit red. It was a pain that was almost indescribable. You couldn't even touch her slightly, and she would scream in pain. We were in hospital for tests, MRIs and x-rays, but most of the doctors came back and were telling us that there was nothing obvious wrong. For our parents, we obviously knew that there was something wrong. So, we spent days in hospital. Doctors were in touch with colleagues at other hospitals, and then it was suggested that she had CRPS. This was 13 years ago. Not much was known about the condition then. Actually, it sounds like it hasn't really progressed that much today. There was no support at all. We did a lot of investigation on the internet, as most parents do. We reached out to a family in the states whose daughter we felt had a similar story in going through the same as what we were going through, because at that time we were really desperate. We even bought a DVD that came from the states on possible treatments. For my daughter, it was almost like a nervous condition that was tricking the brain into thinking that there was something really seriously wrong. Physically, there may not have been anything wrong at all. When I say that, I am not trying to say that it is all in the head. It is certainly not all in the head. It is real pain that people feel, but it is almost like out of control, in comparison to what the original injury might have been. For my daughter, I was two things—medicine, gabapentin, that always sticks in my mind—and a course of intense physiotherapy. That intense physiotherapy was something that I will never forget as well. It was almost like we were torturing her. We knew that we had to break the cycle somehow, so it was trying to get her to walk again, screaming in pain—almost the physiotherapist forcing her to put her foot on the ground, even though that must have been hellish for her, but we felt that we had to do something. It seems like there is a little bit more help available nowadays. I applaud all the charities that have been mentioned and are helping in this area. My daughter went through what was horrendous, but it seems that her outcome was a lot better than most people with the condition that she went through. I hope that, with more awareness and diagnosis, it can be quicker and easier. As awareness grows, I hope that there are better treatments. I thank Clare once again for bringing our story. I hope that we can improve that for many people for years to come. I would like to thank Clare Adamson for her speech. Annie Wells wrote down the same word as I did—brave and emotional and also added personal. I thank Douglas Lumsden for sharing your story as well. I want to take this opportunity to acknowledge, as others have, that November 2023 was the 25th complex regional pain syndrome awareness month, an incredibly important event across the world to mark this serious, and, as we have heard tonight, poorly but very poorly understood condition. I would also like to take this opportunity to commend all of the volunteers, organisations and communities for their hard work in awareness raising of CRPS, and, in particular, CRPS UK and Burning Knights, CRPS support for all the important work that they do for the CRPS community and beyond. Today, in the Parliament, this has provided us with the chance to highlight the impact of CRPS and to reflect on the challenges faced by people living with this condition. The Scottish Government is committed to ensuring that people with CRPS can access the right care in the right place and at the right time. As Rona Mackay said, it is hearing the stories that we have heard tonight that make such a difference. I would also like to commend the work of the chronic pain CPG, which also helps us to establish and understand the impact. As has been illustrated tonight, when we talk about CRPS, we must remember that everyone's experience of pain and this condition is unique. People need support, which addresses their individual needs. I understand, and as has been illustrated tonight, how distressing this condition can be, but also how, with the right information and support, people can regain control of their lives and improve their lives' quality. However, I know that many do not feel that they have access to the support that they need. That is why, in November this year, we published the updated framework for pain management service delivery implementation plan. That plan sets out priorities for improvement of care and services, which have been informed by people with chronic pain, including those with CRPS, and the actions that we will take to support people with pain to live well. The framework was developed through extensive engagement with people with chronic pain, our services, clinicians and third sector, including public consultation on the draft of the framework. We understand that the majority of people with CRPS access support in community settings and we recognise that there are opportunities for improvement. Given the varying impact that CRPS has on general health and wellbeing, different people require different levels of support tailored to their own unique circumstances. We need to promote new approaches to delivery, so specialist services are more accessible and sustainable for the future. We will continue to work with service managers, our clinical networks and the Centre for Sustainable Delivery, to include and introduce new ways of delivering care to create additional capacity and redesign pathways into specialist pain services. We have heard tonight about the variation in management and treatment options across Scotland, and my officials have taken note of some of the points and suggestions that have been made, and we will look into those, specifically around perhaps meeting with CRPS UK and also burning knights. I want to be clear that it is our expectation that every person with CRPS has access to high quality evidence-based effective support to help them to manage the impact of their condition no matter where they live. Together, those actions in our framework will provide a better experience of services for people, improved co-ordination of care between community-based and specialist services, and better outcomes for their care and treatment. Both Clare Adamson and Carol Mockin raised research. We have the NHS research Scottish pain network, which is funded by the Scottish Government through the Chief Scientist Office, which brings together around 200 researchers across multiple disciplines to promote collaboration and to share pain research activity and findings. The Chief Scientist Office directly funds research projects, so any projects on underlying causes, treatment or management of pain are very welcome. I think that tonight's debate has informed us of the many people living with complex regional pain syndrome feel the impact of their condition is often overlooked or ignored by society. We know that people with CRPS also need services that recognise pain and offer effective support for the challenges they face in their daily life. That is why we are taking action to embed awareness and skills in management of chronic pain and associated conditions through our NHS workforce at all levels through a pain-informed approach, but I note what some of the other points that have been made and we will look at other options around that too. I would like to recognise, as I have already, the work that the third sector organisations are doing in this area. We have heard how challenging it can be to find clear and consistent information. In response, we have established a pain management national expert working group dedicated to oversee the improvement and co-ordination of information and resources at a national and local level. That is to ensure that we deliver more useful and appropriate national advice about chronic pain and associated conditions. Better information on the steps that people can take to manage its impact and how they can access further support and services when needed. I am pleased to say that this year, as a result of this work, the chronic pain pages on NHS inform were updated. People with CRPS are already experts on their condition, but we know many benefits from additional supported self-management offered by our partners in the third sector. We have established a dedicated third sector network to improve partnership working and our public services so that people can access a greater range of options for support. The network includes stakeholders such as versus arthritis and pain concern, who provide support for people with CRPS. I am grateful for their contribution and for the important work that they continue to do. We also understand that people living with CEPRS face challenges accessing local services when they need them. The impact that this has on their wellbeing and missed opportunities for earlier, more effective intervention. Our framework includes an aim on accessible care with specific actions to improve how local and national services are delivered to provide a more co-ordinated and consistent experience. We will do that by sharing best practice, promoting innovative and new approaches to service delivery and improving how services understand the needs of their local populations. That supports the approach that we have taken to date to improve how specialist pain services work in partnership and share expertise with primary care colleagues. I want to thank everyone in the chamber for their contributions and, as I said earlier, my officials and I have noted their suggestions and we are very happy to meet them and the charities. I want to finish up by saying that we have been improving referrals and access to the Scottish national residential pain management programme, which provides the highest level of care for people with chronic pain and is funded by the Scottish Government to the value of approximately £630,000 per year. In closing, I would like to reiterate the commitment of the Scottish Government to increasing awareness of complex regional pain syndrome and its impact or, as Rona Mackay has said, open the gate to improve everyone's understanding. We will continue to listen, learn and act to make sure that people living with CRPS are able to access safe, effective and person-centred support to help them to manage their condition and live well.