 FOEI Living Law cruel 안녕하세요 a members of business debate on motion number 9792 in the name of Kenneth Gibson on tackling the stigma of ep error Let's see through education that debate will be concluded with any questions being put on invite those members wish to speak in the debate to please press request to speak buttons now orる zu milk possible and I call on Mr Gibson Kenneth Gibson to open the debate seven minutes please Mr Gibson. I begin by thanking so many members for signing the motion to make this evening's debate possible and Alanna Parker, Epilepsia Consortium Scotland and Alice Trife of Choryl's for their briefings. As convener of the cross-party group and Epilepsia, I've learned a great deal about this condition over the years, much of it's surprising. As treatments and medications have changed and improved, understanding among the general population has remained steadfastly low and with this lack of understanding from some quarters has come stigmatisation and a failing of exclusion for those who live with Epilepsia. Indeed, a 2012 research report by quarriers entitled, We Need to Talk about Epilepsia, found that in terms of attitudes to Epilepsia, one in two respondents felt others treated them differently after they revealed that they have the condition. Whilst many people may not consider being thought of as different as a huge issue, half of children aged 8 to 15 stated that this was the worst part of having Epilepsia and only 38 per cent chose the actual physical seizures. Epilepsia is the most common, serious neurological disorder on the planet. In the UK, 600,000 people live with Epilepsia and 54,000 of those are in Scotland. Epilepsia is best defined as repeated seizures, not just one that is starting the brain. Epilepsia Scotland explains that a brief disturbance in the brain's normal electrical activity causes the nerve cells to fire off random signals. The result is like an electrical storm that causes a temporary overload of the brain. There are many different kinds of seizure. Some end in seconds, while others may last several minutes. People might lose their awareness of what is happening or where they are during a seizure. They may lose consciousness altogether. Epilepsia can be caused if brain tissue is not properly formed or has been damaged by an infection or head injury. However, in around seven out of 10 cases, Epilepsia is no identifiable cause, although it is often thought that there may be a genetic link, an issue that we debated last year in which Scotland leads the world in research. Although a number of third sector organisations such as Quarriers and Epilepsia Scotland offer incredible support to those who live with Epilepsia, a lack of understanding and stigmatisation surrounding condition can make life extremely difficult for those with Epilepsia. People often choose to hide the fact that they have the condition for fear of being misunderstood or thought of and treated as somewhat different from the rest of society. Hiding a part of themselves and having their real needs neglected is one reason why people living with Epilepsia are more likely to develop a mental health problem. Tragically, people with Epilepsia are five times more likely to commit suicide than the general population. We need to talk about Epilepsia report, which I referenced earlier, providing other interesting and shocking figures in relation to the experiences of those who live with Epilepsia, how they feel are treated and viewed. The poll found that more than two thirds of those individuals admit that they worry that what a member of the public would say or do if they had a seizure. A third admit concern over a seizure in public may lead to anxiety about whether to leave the house. Two-fifths avoid telling people that they have Epilepsia. 60 per cent say that Epilepsia is an impact on the relationship with friends and family, while more than half say that it has affected intimate or sexual relationships. Nearly all those polled, 94 per cent feel that most people do not know a lot about Epilepsia, with more than three quarters claiming that the general public makes incorrect assumptions about how Epilepsia affects them. A quarter revealed that they had been accused of faking or exaggerating a seizure, and secondly, some seven per cent have even been filmed or photographed while at their most vulnerable during a seizure. That lack of awareness is not only upsetting for those with Epilepsia, but there are also serious medical consequences. Sarah Brannan, one of the people who told her stories part of the study, explained that many people would simply ignore her or even step over her when she was having a seizure, assuming that she was drunk or on drugs. On another occasion, Sarah was kicked out of a shop after asking for a glass of water to take her seizure prevention medication because the shopkeeper assumed that she was a drug addict. In my role as convener of the CPG in Epilepsia, I wrote to the education departments of all 32 local authorities to ask what first aid and Epilepsia awareness training was given to pupils and staff in their area. To ensure that those with Epilepsia would be good hands should they require the assistance of classmates or staff. Whilst health and wellbeing is covered as part of the curriculum for excellence, Epilepsia awareness is not compulsory nor is it a compulsory element in the student teacher training programme. Indeed, it is at the discretion of head teachers to decide which health topics will be explored. As a result, responses from local authorities are something of a mixed bag, with many simply offering general first aid training and only providing specific Epilepsia training where it was deemed specifically necessary. However, some local authorities, such as East Lothian, advise that all staff could access Epilepsia awareness courses. The City of Edinburgh Council also runs a severe allergies, severe asthma and Epilepsia awareness management and educational establishments course at least once a month and twice on in service days. So, while it is clear that councils must work within time and budget constraints, it is important that much more emphasis is placed on Epilepsia awareness and training and indeed can be, as East Lothian Edinburgh has shown. Especially when seizures can develop any age in a car at any time of day or night. I therefore welcome Epilepsia consortium Scotland's call for local authorities to consider making Epilepsia awareness a compulsory element of all first aid training so that the school staff are better equipped to assist children who are newly diagnosed or indeed yet to be diagnosed. As I indicated earlier, 54,000 people in Scotland have this condition, so it is not rare. I would imagine that most teachers will certainly see it during their career. When I was a pupil, I remember someone who had a seizure in my class, no one knew, he suffered from Epilepsia and it was quite shocking for us. In terms of pupil engagement, I am pleased that the progress continues to be made towards the launch of the Stamp Out Stigma campaign, which has been developed in line with curriculum for excellence by members of the Scottish Youth Parliament in conjunction with Epilepsia Connections, Education Scotland, the Scottish Epilepsia Initiative and Young Epilepsia. The campaign will provide materials for staff and pupils seeking to find out more about Epilepsia, the condition and the effects, and first-hand Epilepsia from people living with it. Those materials will be made available on the glow site for staff and pupils to access. I am aware that classrooms will soon be able to sign up for Epilepsia discussion sessions, and those will undoubtedly help to normalise public attitudes to Epilepsia and reduce the social stigma of the condition. I again thank members for taking the time to sign in my motion and for those in advance who will be participating in this evening's debate. I also thank the minister for speaking on behalf of the Government. I hope that the debate will prove informative to members and that it will encourage local authorities and schools to get involved in the Stamp Out Stigma campaign in order that we can gradually move social attitudes towards Epilepsia into the 21st century. I thank Kenneth Gibson for bringing the debate to the chamber today. I know from his work on the CPG in Epilepsia how involved he is in the deal of helping people with the condition. I am also interested in the fact that there are 54,000 people in Scotland that have the condition. It is something that was brought up. It is like a condition in which I think that you were here before when we talked about multiple sclerosis in Scotland. There are 100,000 people, so it just shows you that it is another neurological condition that people in Scotland obviously have issues with as well. One of the things that Mr Gibson brought up was the stigma that is attached to it. Many young people seem to have an issue with it. I know for a fact that my niece has Epilepsia and she never used to talk about it to such an extent that she did not want anyone else to know about it. Very similar to some of the findings that quarriers brought up in their survey, it was that young people actually felt as if they were treated differently by people within education or anywhere else, if they mentioned that they had Epilepsia. That is where, when Mr Gibson talks about the training for health and safety or first aid training for teachers, it might be something that 32 authorities should have a look at, because we cannot have a patchwork ideal of being able to... In some of the cases that Mr Gibson mentioned, the fact that there was only one authority that said that it actually did have that training and offer. Those are one of the things, because can you imagine the panic in a classroom situation if something like that happens and the teachers are unable to do anything about it? Apart from anything, it would probably be down to local authorities to ensure that their member of staff had that ability to help that young person in that situation. One of the things that was mentioned earlier on was the fact that quarriers, obviously, base in Bridges of Weir. We are not in my constituency, but Nick Storn, my colleagues, Derek Mackay, their actual Scottish Epilepsy Centre, a £6.4 million centre that is in Glasgow. It is obviously there to help families that are dealing with this condition on a long-term basis. As I have said in other debates, it is not just about the actual support and everything else, it is about making sure that they can feel better about just being able to talk to someone. A lot of the time can make quite a big difference when you are dealing with something like that, because I am concerned. I am also thinking about my own TTA—well, she is now in her 20s—about my own niece. She was going to, at one point, try to lie to the DVLA about her licence so that she could get a driving licence, because she had epilepsy and there was obviously a problem with that. She was informed in no certain terms that she was not going to do that, but it just shows her the lens that young people will go to to hide that kind of thing. However, one of the things that Cricklem for Excellence offers is an opportunity to overcome that stigma. The whole point of the Cricklem for Excellence is for young people to be able to get involved and explore different parts of the Cricklem and come to the conclusions themselves. The pack that was talked about with the Stamp Out Stigma campaign and working within the glow system with the available for teachers gives them the opportunity to access that information. It ensures that they can be able to teach it and give young people, move them away from the ignorance of not knowing exactly what they are dealing with. I think that that is one of the things that we have to get over when we are dealing with just about anything, is to make sure that young people are fully informed. In some cases, nowadays, we find that I know for a fact that a lot of young people that we interact with are probably a lot better informed on a lot of those issues than a lot of us are, but it is quite important that we have that available in the Cricklem for Excellence. It gives the teachers and education the opportunity to do that. I would like to thank Kenneth Gibson again—I cannot get used to using his Sunday name—for bringing that to the chamber. I support him and I will continue to support him in all of his campaigns to stamp out the stigma with regard to epilepsy in Scotland. I begin by thanking Kenneth Gibson on securing this debate and reducing the stigma of epilepsy through education. Epilepsy has a huge impact on people's lives, as we have already heard. It affects 1 per cent of the population, and many of us will know a friend or a family member that is affected. For me, it is my mum who was diagnosed with epilepsy six years ago, but I have been suffering from what she calls funny feelings for a couple of years before that. She was stunned to be told that she had epilepsy, but she is now in medication, she is seizure-free, and most importantly, for her, she is back at the driving wheel, and she can get herself around and about. Epilepsy is a condition that varies considerably with at least 40 different types of seizures, but while people's experience of this condition varies, those affected have one thing in common, because every single day people with epilepsy are experienced in stigma, prejudice and discrimination. Having epilepsy can be a lonely and isolating experience, destroying confidence and self-esteem. Research by the quarriers, which colleagues have already highlighted, has found that 55 per cent of sufferers say that people started treating them differently when they found out about their epilepsy. Many keep quiet not just because of the prejudice that they face, but because of the general public ignorance about epilepsy. When my mum first found out that she had epilepsy, in common with 43 per cent of sufferers, she tried to keep quiet about her condition. When she did feel brave enough to speak out, she found that many people simply changed the subject, moving on to talk about other subjects like the weather instead. Others would panic, worried that she would have a seizure at any minute, wondering if they would cope if she did. Is it any wonder that so many people with epilepsy suffer in silence? When a shock in 28 per cent of epilepsy sufferers have been laughed at as a result of having a seizure? When a third of epilepsy sufferers worry about leaving the house in case they have a seizure in public? When 72 per cent say that their condition has affected their career prospects? When 7 per cent say that they have been photographed or filmed while having a seizure? Indeed, a former chief executive of the quarriers said that it appears that they were stuck in the dark ages over how to treat people living with epilepsy. We have huge challenges ahead. It is unacceptable that, in 21st century Scotland, people living with epilepsy are living in fear of ridicule and discrimination. Things are not much better for the fight between 5,000 and 7,000 children and young people with active epilepsy. Indeed, a survey of school children found that, for about half of school children, being thought of as different or being teased by others was the worst part of epilepsy, not the actual seizures themselves. I was quite shocked to read in the excellent briefing provided us for us today by Alana Parker that 31 per cent of young adults were concerned that epilepsy might be contagious. That highlights how much more needs to be done to raise awareness about epilepsy in our schools, in our workplaces and in our communities. I would like to take this opportunity to commend the Stamp Out Stigma awareness raising campaign, which will provide study materials on glow for class teachers and secondary school pupils. The campaign has been developed in line with the curriculum of excellence by members of the Scottish Youth Parliament. I hope that, when it rolls out in the autumn, it will go a long way towards raising awareness in our schools, improving support for young children and adults with epilepsy and, perhaps most importantly, changing people's attitudes and perceptions. I hope that classes in my constituency and across Scotland will sign up for it. A bit concerned for me and Kenneth has already highlighted it, is the lack of adequate first aid training for pupils and staff in our schools, with many schools waiting until a child is diagnosed before putting training measures in place. Given that seizures can develop at any age and at any time, surely we will be better to ensure that every single school has a first aid that is trained to deal with epilepsy. I therefore welcome the minister's comments on what action the Scottish Government can take to move this forward, so that staff in all our local authorities and in all our schools are better able to assess children with epilepsy. I also welcome the minister's comments on what measures the Scottish Government plans to take to raise public awareness and to address the stigma that continues to undermine everyone of every age affected. The CME campaign has been really effective in tackling mental health stigma. I wonder if the minister will consider supporting a similar campaign to address the stigma of epilepsy. Finally, I hope that, during national epilepsy week, together we can go some way towards reversing the negative perceptions that surround epilepsy. It is time to stamp out the stigma. I thank you again to Kenneth Gibson for securing this debate here today. Deputy Presiding Officer, could I thank Kenny Gibson for bringing this debate and also to congratulate him on all the work that he has done in this Parliament over a long period of time on this topic? Deputy Presiding Officer, before I go any further, could I just apologise for a slightly earlier departure for constituency reasons? I can't stay till the end of the debate, so I apologise to Mr Gibson for that. The three previous speakers have eloquently described just how much epilepsy affects the lives of so many people. It is something when one in 97 actually ends up with epileptic fits and the majority of those people managing their condition, it can be extremely difficult, and it has been highlighted how particularly difficult it can be for younger people who, not just because of the medical challenges that they face, obviously have this problem from some of stigma and discrimination. On a personal note, I was lucky enough to teach in a school where epilepsy was well recognised and where teachers, I think, had a good understanding of what it might involve, but I think that the call from Mr Gibson this evening as to what the GTC and teacher training can do is a very important one because there is no question in my mind that it is essential that there is much better understanding not just from staff but from pupils themselves. In preparing for this evening's debate, I looked over the debate that Kenny Gibson secured two years ago on that very same subject. It struck me then that there were comments from David Ford, young epilepsy's chief executive, who said that there had to be a major shift in awareness and understanding if we are going to improve the situation because we know that young people with epilepsy are quite frankly getting a raw deal on too many occasions when it comes to education but obviously to employment and to social interaction. It is very clear that there is a great deal of work that still needs to be done to change public attitudes and to raise awareness on epilepsy. I congratulate the Epilepsy consortium Scotland for what was an excellent briefing. I was very concerned to see in the report, I think that it was a survey of over 19,000 adolescents in the general population, about the perceptions, the lack of understanding, the real understanding of what epilepsy involves. There were some who really, I thought, were very far from appreciating exactly what it was, and that shows us the scale of what we have to do. It is very hard, I think, to control the initial reaction as a teacher within the classroom of young people if a fellow pupil does have a seizure. That is obviously out of concern for the people, but a lot of them do not understand what it is that they have to do. I welcome the very positive steps that have been taken in places such as North Ayrshire. I hope that the minister can take up the point raised by Carol Hilton as to what the Government can do to help with that guidance and training. It is my understanding that currently there is a very mixed picture across the local authorities with regard to the formal training and the raising awareness. I think that Kenny Gibson makes a very good point where we have to look at that because it seems to be a little difficult in some of the areas. I think that it is very worrying that the evidence points towards epilepsy being perceived in a very negative framework. Particularly George Adam made this point about other diseases that have had a better recognition. That is something that I think is very important that we need to take on board as parliamentarians, particularly through debates of this nature, but also through listening to what the very successful lobby groups would tell us. Can I finish on saying again just how important it is that we all have a much better understanding of the difficulties that are faced by people with epilepsy and their families and their teachers to say thank you to Kenny Gibson for bringing this debate? I thank you. Thank you, Deputy Presiding Officer. I add my congratulations to Kenny Gibson for securing this important debate on this Epilepsy Awareness week. As I have mentioned, quarriers conducted research in 2012 and published their findings in a report called, We Need to Talk about Epilepsy. Introducing their findings explained that epilepsy is one of the most serious neurological conditions, and it has a huge impact on people's lives. There is still a stigma around epilepsy that we have to remove. Many people do not understand epilepsy or know that with the right treatment, those with the condition can lead completely normal lives. The research reveals how the kind of negative attitudes towards epilepsy that are still mired in myth and founded on fear or ignorance can impact heavily on those with epilepsy. Nearly all those surveyed felt that most people do not know a lot about epilepsy, with more than three quarters claiming that the general public makes incorrect assumptions about how epilepsy affects them. As we have already heard, more than two thirds of those interviewed admit that they do worry about what a member of the public would say or do if they had a seizure. Therefore, it is no surprise, although it is sad, that a third of those surveyed admitted concern over a seizure in public, leading to anxiety about whether or not they leave the house. I think that that is dreadful. Just over half of the respondents believe that they have been discriminated against and that discrimination towards people with epilepsy is widespread. More than one in four people say that they have been ignored or laughed at during or as a result of having a seizure. People have said that they feel that they are treated differently. That, of course, leads to a great many people avoiding telling others that they have epilepsy. Since we know that around one in a hundred people in the UK have epilepsy, that is a lot of people struggling to cope on their own, and many of them are teenagers. There is evidence that epilepsy is perceived more negatively by teenagers who do not have epilepsy than other chronic illnesses. An assessment of adolescent perception of chronic conditions found that epilepsy was also perceived to have a more negative social impact, particularly on behaviour, honesty, popularity, adeptness at fun and sport. Dishearteningly, significantly more adolescents expressed reluctance to befriend peers with epilepsy, and the most common reason given for that was fear of what to do if a seizure occurred. I cannot think of any other long-term illness that leaves people feeling so isolated. People should not feel that they need to hide the condition. That is why the forthcoming stamp-out stigma campaign, which was developed by members of the Scottish Youth Parliament, in conjunction with partners such as Epilepsy Scotland, Epilepsy Connections, Scottish Epilepsy Initiative and Young Epilepsy, has such a potential to make a significant difference to the lives of children and young people who have epilepsy. Those of us in the cross-party working group on epilepsy have heard the MSYP's speak on the need for awareness training, and I want to congratulate them for the determination to develop the campaign. Scotland has 54,000 people with epilepsy. Research has shown that 95 per cent of children with epilepsy struggle at school, their difficulties are often ignored or misunderstood. I want to see that change. Proper support should be available to everyone, and teacher training should include epilepsy awareness. Epilepsy is a condition that manifests itself in many different ways, so teachers and school staff need to better understand how seizures impact on learning. Epilepsy awareness training gives people confidence in dealing with seizures, and information about first aid for epilepsy may even save lives. Given that seizures can develop at any age and occur at any time of the day or night, it is sensible for school first aiders to know about epilepsy and to share that information with colleagues. I support the Epilepsy Consortium Scotland's call for local authorities to consider making epilepsy awareness a compulsory element of all first aid training so that school staff are better equipped to assist children who are newly diagnosed. In closing, I pay tribute to the many organisations in supporting people with epilepsy, but I would like to particularly highlight the work of the Muir Maxwell Trust in trying to combat the stigma of epilepsy. Their mum-on-the-run for epilepsy campaign has been very well received. In fact, so much so that what was to be a temporary programme will now continue indefinitely. The overarching purpose of those talks is to inspire, motivate and encourage young people to overcome challenges, as well as provide a greater understanding and awareness of the issues surrounding epilepsy. They are doing a good job, and I would like all of us to play our part in doing what we can to build a future free of stigma. Thank you very much. I now call on the minister, Michael Matheson, to close on behalf of the Government. The seven minutes are there by minister. Thank you very much, Presiding Officer. I like others offer my congratulations to Kenny Gibson in securing the most recent member's debate and also to recognise his particular interest in his area and the work that he undertakes through the cross-party group and through his good convenership. This evening's debate is also provided with an opportunity to consider a number of issues around how epilepsy is addressed within society. I am like all members in this chamber saddened when I hear of discrimination or stigmatisation of anyone who lives with an illness or disability, and we have learned from the debate alone about how stigma can impact on people with epilepsy in an unacceptable way. As several members have made reference to, the research that has been carried out on behalf of quarriers brings home in quite a sobering way just how people's lives can be affected by this condition. I recognise that all members in this chamber will have a strong commitment to making Scotland a country where everyone is treated fairly and has a chance to achieve their full potential in all aspects of their lives without being held back by discrimination or stigma because of their own personal health circumstances. The campaign that has been taken forward by members of the Scottish Youth Parliament in stamping out stigma is a very welcome addition to the overall campaign in tackling any form of stigma within our society. However, like all neurological conditions, good information is vitally important. Epilepsy is recognised as a complex condition, and it is also complex because of the misconceptions that it can give rise to. Misconceptions that I am sure all members recognise need to be very strongly challenged. A key part of breaking down those misconceptions is to make sure that people get the opportunity to talk about issues such as epilepsy. It is not only through encouraging openness and discussion that we can get to the point where we can make progress on those types of issues. I am aware that a lot of valuable work has been done by stakeholders in providing support and information, as well as raising awareness around epilepsy. For example, the Epilepsy Connection, which is a Scottish charity, is one of its principal objectives, is to raise awareness of the diversity and complexity of epilepsy needs. Fundamental to its approach to charity is the involvement of epilepsy service users in the process of planning and the way in which those services are then delivered. It also has an ethnic minority project supporting people with Black and minority ethnic communities, as well as their family, friends and carers. Importantly, Epilepsy Connections aims to raise awareness of the condition as well as reducing the stigma surrounding epilepsy in ethnic communities. Other charities, including Epilepsy Scotland, have led the way for many years now in combating prejudice that exists, and not least in the workplace that some individuals with epilepsy can experience. Their development of the occupational health guide for epilepsy for employers, which was launched back in 2011, acknowledges the importance of employers having a readily accessible and up-to-date information about epilepsy issues, including matters such as first aid, which is extremely important. Only a few weeks ago, I had an opportunity to speak at the national neurological advisory group learning and sharing event. I was very clear at that event that there is a tremendous amount of commitment from all those in the neurological community in Scotland to ensure that we continue to build on the good progress that has been made in improving service of those with a neurological condition in Scotland, including those with epilepsy. The national neurological advisory group was formed to take forward work to ensure that we continue to improve the way in which neurological care is provided in Scotland. Epilepsy is well represented on that particular group. Several members have made reference to the training that teachers receive. I am sure that members will recognise that local authorities have an extremely important role to play in making sure that individuals with epilepsy receive the right type of support and assistance. We want all children and young people to get support that they need in order to reach their full learning potential. That is why the additional support for learning act was put into place to ensure that educational authorities have a clear duty to identify, provide and to review the additional support needs of their pupils, including someone who may have a condition like epilepsy. Children and young people with disabilities should receive the support that they need to overcome any barriers to learning, including the support of additional equipment and services if necessary. Where necessary, schools should also make reasonable adjustments in order to facilitate their pupils' attendance at schools. George Adam and his contribution made reference to the benefits that can be gained through the curriculum for excellence. Although we do not prescribe exactly what should be two pupils through the curriculum for excellence, it provides a unique opportunity to cover neurological conditions just like epilepsy in the work that they take forward with their pupils. There are two particular bodies that have a clear responsibility, a statutory responsibility, to make sure that children with epilepsy get the right support that is required for them. One is our local authorities and the second is our health boards. Local authorities have a responsibility to ensure that every child reaches his or her full potential as well as a duty to make reasonable adjustments to ensure that that pupil does not suffer a disadvantage as a result of their condition. An important part of that is for local authorities to make sure that their teachers and their support staff have the right training that is required in order to support their pupils as well. I note that Kara Hilton, in her own contribution, asked me to consider what action I would take to make sure that local authorities have properly trained first-aiders in their schools. I am sure that, as a member of a local council, the member is aware that that is the responsibility of the local authority to take that forward. I would encourage a member to contact her own local authority to ensure that they have adequate training in place for their teachers and their support staff in order to meet any pupil's needs. Alongside that, our health boards also have a responsibility to make sure that patients with epilepsy receive the right training and the right type of support for their condition. In drawing my remarks to her clothes, National Epilepsy week is a good example of epilepsy charities working collectively to raise awareness of epilepsy. I want to congratulate them on the work that they will undertake over the coming week. I hope that I have been able to reassure members that we are working in partnership with a variety of stakeholders to make sure that those who live with a neurological condition, such as epilepsy, receive the highest standard of care and support in Scottish society. I now close this meeting of Parliament.