The final item of business is a members’ business debate on motion S4M-09792, in the name of Kenneth Gibson, on tackling the stigma of epilepsy through education. The debate will be concluded without any questions being put.
Motion debated,
That the Parliament is saddened by what it understands is the persistent social stigma associated with epilepsy, which variously affects the lives of 54,000 people with this condition in Scotland; recognises research by Quarriers in 2012 that found that one in two people with epilepsy still encounters prejudice from the public and understands that nearly everyone with epilepsy polled said that most people know little about it; considers that informing attitudes through public education based on the See Me campaign model helps to tackle longstanding stigma and discrimination toward epilepsy; notes calls for all school pupils to learn about the effects of epilepsy and other long-term conditions and potentially life-saving techniques; acknowledges the forthcoming Stamp Out Stigma awareness-raising campaign for secondary pupils developed by Members of the Scottish Youth Parliament in conjunction with Epilepsy Connections, Education Scotland, Scottish Epilepsy Initiative and Young Epilepsy; understands that, by making epilepsy awareness a compulsory element of all first aid training, school staff in North Ayrshire and elsewhere can better assist over 800 children who are newly diagnosed each year, and up to 7,000 children and young people with active epilepsy, and believes that National Epilepsy Week, from 18 to 24 May 2014, offers an ideal opportunity to transform public perceptions.
17:31
I thank the many members who signed the motion to make the debate possible, and I thank Allana Parker of epilepsy consortium Scotland and Alice Drife of Quarriers for their briefings.
As convener of the cross-party group on epilepsy, I have learned a great deal about the condition over the years, and much of it has been surprising. As treatments and medications have changed and improved, understanding among the general population has remained steadfastly low, and with that lack of understanding has come stigmatisation from some quarters and a feeling of exclusion for the people who live with epilepsy.
On attitudes to epilepsy, a 2012 research report by Quarriers entitled “We need to talk about epilepsy” found that one in two respondents felt that others treated them differently after they revealed that they had the condition. Many people may not consider being thought of as different as a huge issue, but half of children aged eight to 15 years with epilepsy stated that it was the worst part of having epilepsy; only 38 per cent said that the physical seizures were the worst part.
Epilepsy is the most common serious neurological disorder on the planet. In the United Kingdom, 600,000 people live with it and 54,000 of them are in Scotland. It is best defined as repeated seizures—not just one—that start in the brain. Epilepsy Scotland explains:
“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 in 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.”
Epilepsy can be caused if brain tissue is not properly formed or has been damaged by an infection or head injury. However, in about seven out of 10 cases, it has no identifiable cause, although it is thought that there may be a genetic link. We debated that link the year before last and Scotland leads the world in research on it.
Although a number of third sector organisations, such as Quarriers and Epilepsy Scotland, offer incredible support to people who live with epilepsy, the lack of understanding of and the stigmatisation surrounding the condition can make life extremely difficult for those with it. People often choose to hide the fact that they have the condition for fear of being misunderstood or of being 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 who live with epilepsy are more likely to develop a mental health problem. Tragically, people with epilepsy are five times more likely to commit suicide than the general population.
The “We need to talk about epilepsy” report to which I referred provided other interesting and shocking figures on the experiences of people who live with epilepsy and on how they feel they are treated and viewed. More than two thirds of those who were interviewed for the poll admitted that they worried about what a member of the public would say or do if they had a seizure. A third admitted that concern over a seizure in public may lead to anxiety about whether to leave the house. Two fifths avoided telling people that they had epilepsy, while 60 per cent said that epilepsy had an impact on relationships with friends and family and more than half said that it had affected intimate or sexual relationships.
Nearly all of those who were polled—94 per cent—feel that most people do not know a lot about epilepsy. More than three quarters—77 per cent—claim that the general public make incorrect assumptions about how epilepsy affects sufferers. A quarter revealed that they had been accused of faking or exaggerating a seizure and, sickeningly, 7 per cent have even been filmed or photographed while having a seizure, when they are at their most vulnerable.
That lack of awareness is not only upsetting for the people who have epilepsy, but can have serious medical consequences. Sara Brannan—one of the people who told her story as 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, Sara was kicked out of a shop after asking for a glass of water to take her seizure-preventing medication, because the shopkeeper assumed that she was a drug addict.
In my role as convener of the cross-party group on epilepsy, I wrote to the education departments of all 32 local authorities to ask what first aid and epilepsy awareness training was being given to pupils and staff in their areas to ensure that people with epilepsy would be in good hands should they require the assistance of their classmates or colleagues. Although health and wellbeing is covered as part of curriculum for excellence, epilepsy awareness is not compulsory, nor is it a compulsory element in the teacher-training programme; indeed, it is at the discretion of headteachers to decide which health topics will be explored. As a result, the responses from local authorities were something of a mixed bag, with many simply offering general first aid training and only providing specific epilepsy training where it was deemed to be necessary.
However, some local authorities, such as East Lothian Council, advised that all staff could access epilepsy awareness courses and, at least once a month, and twice on in-service days, the City of Edinburgh Council runs a course entitled “Severe Allergies, Asthma and Epilepsy Awareness—management in educational establishments”.
Although it is clear that councils must work within time and budget constraints, it is important that much more emphasis be placed on epilepsy awareness and training, especially when seizures can develop at any age and occur at any time of the day or night. As the City of Edinburgh Council and East Lothian Council have shown, that can be done. I therefore welcome 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 or are yet to be diagnosed. As I said, 54,000 people in Scotland have the condition, so it is not rare; I imagine that most teachers will see it during their career. When I was at school, a boy in my class had a seizure. No one had known that he suffered from epilepsy, and it was quite shocking for us.
In terms of pupil engagement, I am pleased to note that progress continues to be made towards the launch of the stamp out stigma campaign that has been developed in line with the curriculum for excellence by members of the Scottish Youth Parliament in conjunction with Epilepsy Connections, Education Scotland, Scottish Epilepsy Initiative and Young Epilepsy. The campaign will provide materials for staff and pupils who are seeking to find out more about epilepsy—the condition and the effects—and will enable people to hear first-hand evidence from people who are living with epilepsy. The materials will be made available on the glow website for staff and pupils to access. I am aware that classrooms will soon be able to sign up for epilepsy discussion sessions. Those discussions will undoubtedly help to normalise public attitudes to epilepsy and reduce the social stigma of the condition.
I would like again to thank members who signed my motion and those who will participate in this evening’s debate, and I also thank the minister for speaking on behalf of the Government. I hope that the debate will be informative to members and that they will encourage their local authorities and schools to get involved in the stamp out stigma campaign, so that we can gradually change social attitudes towards epilepsy into the 21st century.
17:38
I thank Kenneth Gibson for bringing the debate to the chamber. I know, from his work on the cross-party group on epilepsy, how involved he is in working to help people with the condition.
It is interesting to hear that 54,000 people in Scotland have epilepsy. We recently had a members’ business debate about multiple sclerosis, and there are 100,000 people in Scotland with that condition. Those are two neurological conditions that affect people in Scotland.
Mr Gibson mentioned the stigma that is attached to epilepsy and that affects many young people. My niece has epilepsy and she never used to talk about it, because she did not want anyone to know that she had it. The Quarriers research found something similar. Young people felt as though they were treated differently in education and elsewhere if they mentioned that they had epilepsy.
Mr Gibson talked about first aid training for teachers. Perhaps the 32 local authorities should consider that. Mr Gibson mentioned that only one authority offers such training. We can imagine the panic in a classroom if someone has a seizure and the teacher is unable to do anything about it. It is probably down to local authorities to ensure that their staff are able to help a young person in that situation.
Quarriers is based in Bridge of Weir, which, Presiding Officer, is not in my constituency but in the one next door, which is the constituency of my colleague Derek Mackay. Its £6.4 million Scottish epilepsy centre in Glasgow is there to help families that are dealing with the condition in the long term. As I have said previously, it is not just about support and so on; it is about ensuring that sufferers feel better about their condition. A lot of the time, just being able to talk to someone can make quite a big difference.
My niece is now in her 20s. At one point, she was going to lie to the Driver and Vehicle Licensing Agency so that she could get a driving licence. She had been informed in no uncertain terms that she could not get a licence because of her epilepsy. That shows the lengths that young people with epilepsy will go to to hide their condition.
The curriculum for excellence offers an opportunity to overcome that stigma. The whole point is to enable young people to explore different parts of the curriculum and come to their own conclusions. The stamp out stigma campaign and the glow network give teachers access to information about epilepsy and help them to teach young people about the condition and move them away from ignorance—from not knowing what they are dealing with. In dealing with just about anything, we need to ensure that young people are fully informed. The young people who we interact with are probably a lot better informed on a lot of issues than many of us are. It is important that education about epilepsy is available in the curriculum for excellence.
I thank Kenneth Gibson—I cannot get used to using his Sunday name—for bringing the debate to the chamber. I support him in his campaign to stamp out stigma about epilepsy in Scotland, and will continue to support him.
17:43
I thank Kenneth Gibson for securing the debate on tackling the stigma of epilepsy through education. As we have heard, epilepsy has a huge impact on people’s lives. It affects 1 per cent of the population and many of us will have a friend or a family member who is affected. For me, it is my mum, who was diagnosed with epilepsy six years ago but had 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 on medication, is seizure free and, most important for her, she is back at the steering wheel and can get herself out and about.
Epilepsy is a condition that varies considerably. There are at least 40 different types of seizures. While people’s experience of the condition varies, those affected have got one thing in common: every day, people with epilepsy experience stigma, prejudice and discrimination. Having epilepsy can be a lonely and isolating experience that destroys confidence and self-esteem.
Colleagues have highlighted the Quarriers research, which found that 55 per cent of sufferers said that they were treated differently when people found out about their epilepsy. Many keep quiet, not just because of the prejudice that they face but because of 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 felt brave enough to speak out, she found that many people simply changed the subject and moved on to talk about the weather instead. Others would panic, worried that she would have a seizure at any minute and wondering whether they would cope if she did.
Is it any wonder that so many people with epilepsy suffer in silence when a shocking 28 per cent of epilepsy sufferers have been laughed at as a result of having a seizure? A third of epilepsy sufferers worry about leaving the house in case they have a seizure in public, 72 per cent say that their condition has affected their career prospects and 7 per cent say that they have been photographed or filmed when having a seizure. A former chief executive of Quarriers said:
“It appears we are 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 between 5,000 and 7,000 children and young people who have active epilepsy. A survey of school children found that, for over half of them, being thought of as different or being teased by others—not the seizures themselves—was the worst part of epilepsy. I was quite shocked to read in the excellent briefing provided by Allana Parker that 31 per cent of young adults were concerned that epilepsy might be contagious. That really highlights how much more needs to be done to raise awareness of epilepsy in our schools, workplaces and communities.
I 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 for 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 children and young adults with epilepsy and, perhaps most important, changing people’s attitudes and perceptions. I hope that classes in my constituency and across Scotland will sign up for it.
A big concern for me, which Kenneth Gibson has highlighted, 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 it would be better to ensure that every single school has a first aider who is trained to deal with epilepsy. I would 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 all our schools are better able to assist children with epilepsy.
I would also welcome the minister’s comments on what measures the Scottish Government plans to take to raise public awareness and address the stigma that continues to undermine everyone of every age who is affected by epilepsy. The see me campaign has been really effective in tackling mental health stigma. Would the minister consider supporting a similar campaign to address the stigma of epilepsy?
I hope that during national epilepsy week we can together go some way towards reversing the negative perceptions that surround epilepsy. It is time to stamp out the stigma. I thank Kenneth Gibson again for securing the debate.
17:47
I thank Kenny Gibson for securing the debate and I congratulate him on all the work that he has done on the topic in Parliament over a long period. Before I go any further, I apologise to Mr Gibson as I must depart early for constituency reasons and so cannot stay until the end of the debate.
The three previous speakers described eloquently just how much epilepsy affects the lives of so many people. It is something when one in 97 people ends up having epileptic fits. For the majority of those people, managing their condition can be extremely difficult. It has been highlighted that it can be particularly difficult for younger people—not just because of the medical challenges that they face, but because of the stigma and discrimination that they experience from some people.
On a personal note, I was lucky enough to teach in a school where epilepsy was well recognised and where teachers had a good understanding of what it might involve. However, the call from Mr Gibson about what the General Teaching Council for Scotland and teacher training can do is important. There is no question in my mind but that it is essential that there is much better understanding—not just among staff, but among pupils.
In preparing for this evening’s debate, I looked over the debate that Kenny Gibson secured two years ago on this very subject. I was struck by comments that were quoted from David Ford, Young Epilepsy’s chief executive, who said:
“A major shift in awareness and understanding is the only thing that is going to improve this situation. We know that young people with epilepsy are getting a raw deal when it comes to education, employment and social interaction”.
It is therefore very clear that a great deal of work still needs to be done to change public attitudes and to raise awareness of epilepsy. I congratulate epilepsy consortium Scotland on an excellent briefing.
I was very concerned to see in a report from a survey of more than 19,000 adolescents in the general population the perceptions and lack of real understanding of what epilepsy involves. Some are very far from appreciating exactly what it is, which shows us the scale of what we have to do.
It is very hard for teachers to control the initial reaction of young people in a classroom if a fellow pupil has a seizure. Obviously, what they do is out of concern for the pupil, but many of them do not understand what they have to do. I welcome the positive steps that have been taken in places including North Ayrshire and hope that the minister can take up the point that Cara Hilton made on what the Government can do to help with guidance and training. My understanding is that there is currently a very mixed picture across the local authorities on formal training and raising awareness. Kenny Gibson made a very good point. We have to look at that, because that seems to be a little difficult in some areas.
It is very worrying that the evidence points towards epilepsy being perceived in a very negative framework; I think that George Adam made a point about other diseases having received better recognition. That is a very important point that we, as parliamentarians, need to take on board, especially in debates such as this one, but also through listening to what the very successful lobby groups tell us.
I say again that it is important that we all have a much better understanding of the difficulties that people with epilepsy and their families and teachers face, and I thank Kenny Gibson for bringing this debate to the Parliament.
17:52
I, too, congratulate Kenneth Gibson on securing this important debate in epilepsy awareness week.
As other members have mentioned, Quarriers conducted research in 2012 and published its findings in a report called “We need to talk about epilepsy”. In introducing its findings, it explained:
“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 don’t understand epilepsy or know that with the right treatment, those with the condition can lead completely normal lives.”
The research reveals how the negative attitudes towards epilepsy that are still mired in myth and founded on fear or ignorance can impact heavily on those with it. Nearly all those who were surveyed felt that most people do not know a lot about epilepsy. More than three quarters claimed that the general public make incorrect assumptions about how epilepsy affects them. As we have already heard, more than two thirds of those who were interviewed admitted that they worried about what a member of the public would say or do if they had a seizure. Therefore, although it is sad, it is no surprise that a third of those who were surveyed admitted concern about a seizure in public leading to anxiety about whether to leave the house. That is dreadful.
Just over half of the respondents believed that they had been discriminated against and that discrimination towards people with epilepsy is widespread. More than one in four people said that they had been ignored or laughed at during or as a result of having a seizure, and people with epilepsy 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.
We know that around one in 100 people in the UK has epilepsy. That is a lot of people struggling to cope on their own. 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 are. An assessment of adolescent perceptions of chronic conditions found that epilepsy was also perceived to have a more negative social impact, particularly on behaviour, honesty, popularity, adeptness at sports and fun. It is disheartening that significantly more adolescents expressed reluctance to befriend peers with epilepsy. The most common reason that was 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 has been developed by members of the Scottish Youth Parliament in conjunction with partners such as Epilepsy Scotland, Epilepsy Connections, the Scottish Epilepsy Initiative and Young Epilepsy, has such potential to make a significant difference to the lives of children and young people who have epilepsy. Those of us on the cross-party working group on epilepsy have heard the MSYPs speak on the need for awareness raising, and I congratulate them on their determination to develop the campaign.
Scotland has 54,000 people with epilepsy. Recent 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 understand better 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. Therefore, I support the call from epilepsy consortium Scotland 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.
I pay tribute to the many organisations that support people with epilepsy. I particularly highlight the work of the Muir Maxwell Trust in trying to combat the stigma of epilepsy. Its 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 continue indefinitely. The overarching purpose of those talks is to inspire, motivate and encourage young people to overcome challenges, as well as to provide a greater understanding and awareness of the issues surrounding epilepsy. It is doing a good job; I want us all to play our part in doing what we can to build a future free of stigma.
17:57
Like others, I offer my congratulations to Kenneth Gibson on securing the debate. I also recognise his particular interest in this area and the work that he undertakes through his good convenership of the cross-party group on epilepsy.
The debate provides an opportunity to consider a number of issues around how epilepsy is addressed in our society. Like all members in the chamber, I am saddened when I hear of the discrimination and stigmatisation of anyone who lives with an illness or disability. We have learned from the debate how stigma impacts unacceptably on people with epilepsy.
Several members have mentioned the research that was carried out on behalf of Quarriers. That brings home in quite a sobering way just how peoples’ lives can be affected by epilepsy. I recognise that all members in the chamber have a strong commitment to making Scotland a country where everyone is treated fairly and has the chance to achieve their full potential in all aspects of their lives without being held back by discrimination or stigma because of their personal health circumstances. Members of the Scottish Youth Parliament are taking forward its stamp out stigma campaign, which is a very welcome addition to the overall campaign in tackling all forms of stigma in our society.
As is the case with all neurological conditions, it is vital to have good information. As members recognise, epilepsy is a complex condition, not least because of the misconceptions to which it gives rise. As I am sure all members recognise, those misconceptions need to be challenged very strongly. Key to breaking the misconceptions is to ensure that people get the opportunity to talk about issues such as epilepsy. It is only through encouraging openness and discussion that we can get to the point at which progress can be made.
I am aware that stakeholders have done a lot of valuable work in providing support and information, as well as raising awareness about epilepsy. For example, a principal objective of Epilepsy Connections, a Scottish charity, is to raise awareness of the diversity and complexity of epilepsy needs. Fundamental to the charity’s approach is the involvement of epilepsy service users in the planning and delivery of services. It also runs an ethnic minorities project, which supports people from black and minority ethnic communities and their families, friends and carers. The charity aims to raise awareness of epilepsy and to reduce the stigma around the condition in ethnic communities. That is important.
Other charities have led the way for many years in combating the prejudice that individuals with epilepsy can experience, not least in the workplace. For example, Epilepsy Scotland’s guide for employers, “Epilepsy and Occupational Health”, which was launched in 2011, acknowledges the importance of employers having readily accessible and up-to-date information about epilepsy, including information about first aid, which is extremely important.
A few weeks ago I had the opportunity to speak at the national neurological advisory group’s learning and sharing event. It was clear to me that there is tremendous commitment from everyone in the neurological community in Scotland to building on the good progress that has been made towards improving services for people who have neurological conditions, including epilepsy. The national neurological advisory group was formed to take forward work to improve neurological care in Scotland. Epilepsy is well represented on the group.
Several members referred to training for teachers. I am sure that members recognise that local authorities have an important role to play in ensuring that individuals who have epilepsy receive the right support and assistance. We want all children and young people to get the support that they need to reach their full learning potential.
The additional support for learning legislation was put in place to ensure that education authorities have a clear duty to identify, provide for and review the additional support needs of their pupils, including pupils with a condition such as epilepsy. Children and young people with disabilities should receive the support that they need to overcome barriers to learning. Such support might include the provision of additional equipment and services. Where necessary, schools should make reasonable adjustments to facilitate pupils’ attendance.
George Adam mentioned the benefits of curriculum for excellence. We do not prescribe what should be taught to pupils, but the curriculum for excellence provides teachers with a unique opportunity to cover neurological conditions such as epilepsy.
Two bodies have a statutory responsibility to ensure that children with epilepsy get the support that they require: the local authority and the health board.
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 a pupil suffers no disadvantage as a result of their condition. An important element of that is local authorities’ responsibility to ensure that their teachers and support staff have the right training, so that they can support their pupils. Cara Hilton asked me to consider action to ensure that local authorities have properly trained first-aiders in schools. She is a council member, so I am sure that she is aware that that is the responsibility of the local authority. I encourage her to contact her local authority to ensure that it has put in place adequate training for teachers and support staff, so that they can meet pupils’ needs.
Health boards have a responsibility to ensure that patients with epilepsy receive the right support.
National epilepsy week presents a good example of epilepsy charities working collectively to raise awareness of the condition. I congratulate the charities on their work over the week. I hope that I have been able to reassure members that we are working in partnership with a variety of stakeholders to ensure that people in Scottish society who live with a neurological condition such as epilepsy receive the highest quality care and support.
Meeting closed at 18:04.Previous
Decision Time