Epilepsy Awareness Training
The next item of business is, slightly unusually, a members’ business debate on motion S3M-7361, in the name of Kenneth Gibson, on epilepsy awareness training.
Motion debated,
That the Parliament believes that there would be merit in epilepsy training becoming an integral part of the student teacher training course curriculum so that teaching staff are equipped to detect potential seizures in children and young people and can be proactive in providing appropriate support to pupils with epilepsy and agrees that this could boost teacher confidence in handling as many as 7,000 children in Scotland with active epilepsy, enable early detection of seizures in over 800 children each year, provide more tailored learning and emotional support to normalise the condition and reduce classroom stigma for children in North Ayrshire and across Scotland.
13:20
I am delighted to have secured this debate and would like to sincerely thank the 33 members who supported the motion, and Epilepsy Scotland for their assistance and encouragement.
Epilepsy is the most common neurological disorder in the world and affects one in every 130 people in Scotland. The disorder is diagnosed when a person has multiple seizures originating in the brain. When normal neural activity experiences a disturbance, the brain fires off random nerve-cell signals, which cause an epileptic seizure. There are more than 40 types of epileptic seizure, ranging from symptomatic, in which brain damage is the cause, to idiopathic, in which no direct cause can be found. The different types of seizures can last anywhere from a few seconds to a few minutes and each type produces a different reaction, ranging from temporary loss of awareness to extended periods of convulsions.
Each type of epilepsy must be dealt with in a specific way. The people surrounding an individual who experiences an epileptic seizure are responsible for keeping that person safe. As such, those who care for individuals with epilepsy need to be aware of the different types of disorder and how each can most safely be addressed. As children are not equipped to deal with medical scenarios such as epilepsy, it is essential for pupils to have responsible adults nearby who are aware of and can react quickly to their condition as necessary.
Therefore, it is vital to take any possible measures to protect and promote the safety in our schools of children who suffer from epilepsy. To secure maximum safety for those young individuals, it is of the utmost importance that all teachers be educated in the detection of epileptic seizures and in the proper means of treatment during and after said seizures. As key care givers in children’s lives, teachers are responsible for their pupils’ development and safety while the children are in their care, and it is our duty to ensure that they are equipped to handle any condition that is as common as epilepsy.
Currently, teaching staff go through epilepsy training only when one of their students is diagnosed with it. Given that students are not always near their instructors, but are sometimes in the presence of other teaching staff, it is vital for all teaching staff to be proficient in their knowledge of epilepsy and how it impacts on developing children. One third of pupils with epilepsy have learning disorders and many have emotional, cognitive and behavioural difficulties. All teachers need to be aware of epilepsy and its effects, so that they can be as helpful to and as understanding of children with epilepsy and, indeed, their peers, as possible.
The debate is important. I have found that the attitude of adults to epilepsy can be pretty appalling. Does Kenneth Gibson believe that awareness raising among teachers and children will make a difference to attitudes in the wider community?
I certainly hope that it will. As the years progress and as epilepsy training becomes more common for teachers and as children learn to understand it, there will be much more understanding of what is a widely misunderstood illness in our society.
Epilepsy training should become a mandatory segment of the student teacher training course. Although many people with epilepsy take medication to prevent seizures, epilepsy can manifest at any age, so seizures might happen without warning in the classroom, which makes teacher training all the more vital. Epilepsy training would prepare all educators to care most effectively for students with epilepsy, as well as for students who have unexpected seizures. The training would also enable teachers to feel confident about, rather than threatened by, the possibility of an epileptic seizure occurring in their classroom. Knowledge of which actions to take for different types of epileptic seizures and the ability to recognise signs that a seizure might be about to occur would guarantee that teachers could keep their pupils safe.
Furthermore, as teachers are prominent figures in children’s lives, it is essential for them to understand the most effective means of supporting students with epilepsy and their families and peers. The proposed training for teachers would not only develop teachers’ skills in dealing with this serious and common medical condition, but guide them to promote the normalcy of epilepsy, thus reducing the stigma that often plagues the disorder, which Cathy Peattie touched on. As many as 7,000 Scottish children experience epileptic seizures, and any reduction in stigma would benefit the psychological development of children with epilepsy and improve their ability to cope with their disorder.
Programmes for epilepsy awareness among teachers that are similar to the one that I am suggesting have been quite effective in other nations. Epilepsy Wales, for example, is a programme that sends field workers into Welsh schools to instruct teachers how to react to seizures and how to increase sensitivity to epileptic pupils in their classrooms. It has had great success in increasing awareness among teachers and pupils.
A study that was carried out in Thailand revealed teachers’ immense impact on the attitudes that their pupils have towards epilepsy. The study concluded that a public education campaign about epilepsy would certainly improve the quality of life and safety of children who suffer from epileptic seizures.
The United States has experienced benefits for children with epilepsy through the efforts of the school alert programme, which is run by the Epilepsy Foundation of America. The programme has sent experts to instruct teachers in how to respond to epileptic seizures that occur in their classrooms. It has been so successful that an epilepsy education programme may soon be approved for teachers to take as part of their continuing education programme.
Scots are gaining awareness of epilepsy through the excellent work of Epilepsy Scotland, which is making efforts to improve the health care for the 40,000 people who are living with epilepsy in Scotland. The organisation’s website reads:
“Being informed about the condition, knowing the medical terms and how to handle any problems helps reduce the impact epilepsy has on a person’s life.”
Epilepsy awareness training would advance those efforts and improve the standard of health not just for children, but for all people with epilepsy.
Making epilepsy training mandatory during student teacher training would promote the wellness and protection of pupils in classrooms throughout Scotland. The safety of all pupils is a benchmark in classroom standards, and guaranteeing teachers’ capability in dealing with epileptic seizures would benefit students, and ultimately expand national awareness of this often misunderstood neurological disorder.
13:27
I congratulate Kenneth Gibson on bringing the debate to the chamber. I believe that the cross-party group on epilepsy has one of the highest numbers of MSP members—I am included—so I know that it is an issue that members agree requires some attention.
As Kenneth Gibson said, epilepsy affects different people in different ways. There are more than 40 types of seizures and epilepsy syndromes, and some people may experience more than one kind. That is why training for people who may come into contact with those who have epilepsy is extremely important.
Kenneth Gibson’s motion deals with the subject of epilepsy training “becoming an integral part” of student teacher training, and I whole-heartedly agree that teachers should have that training. It is important to remember than many teachers may themselves have or develop epilepsy, so awareness training can be doubly important. After all, it is primarily a matter of threshold, and any of us at any time could have an epileptic seizure.
However, I will talk about training in the justice system, which includes police, fiscals, defence lawyers, sheriffs and criminal justice authorities staff. I have had the good fortune to have worked with Epilepsy Scotland during the current session of Parliament on some of those areas. Epilepsy Scotland’s work has been facilitated through meetings that we have held with the Solicitor General for Scotland, and I acknowledge his input, advice and help.
Every year in Scotland, people with epilepsy are charged with minor offences and misdemeanours. Most of the cases relate to actions that are carried out when someone is having, or has just had, a seizure—the post-ictal period—during a state of confusion or automatism. Cases usually relate to a minor offence such as resisting paramedics on entering an ambulance, resisting the police, urinating in public, removing clothing in public, being aggressive in a shop, banging dustbin lids together in a lane, sitting in a taxi refusing to pay the fare, walking up and down the aisle of an aeroplane and refusing to fasten a seat belt, and fire raising.
The list is limitless and reflects disturbed behaviour when a person with epilepsy is confused, and often when attempts at restraint are made. The general public is not fully aware that one should not attempt to restrain anyone during a post-ictal state. Epilepsy Scotland has done a great deal to educate police officers about epilepsy but, sadly, people are still arrested for minor offences. Many have to engage in a prolonged legal process before the case is—more often than not—dismissed.
The stress and delay that are involved in that process can have a significant effect on people with epilepsy, such as by increasing anxiety levels, worsening seizure control, which is important, inducing a loss of self-esteem, producing family conflict, and leading to depression and even a risk of suicide. Indeed, we should note that persons with temporal lobe epilepsy are at 25 times greater risk of suicide than are people in an age-matched control group. Such individuals have worsening job prospects and a change of employment is impossible when a court appearance is pending: then, of course, they might be criminalised. The legal process can sometimes take more than a year to conclude and sometimes the individual is urged to plead guilty just to reduce the stress, which leaves them with a criminal record.
I have to say that there have recently been positive signs of progress. Instead of remanding individuals, sheriffs are proposing that there be bail support, with the support of Epilepsy Scotland. Unfortunately, however, bureaucratic problems have made progress difficult. If the Cabinet Secretary for Justice is serious about reducing the numbers who are inappropriately placed on remand because they have epilepsy, there is an opportunity here for him to act.
I am pleased to report that training for probation officers is being provided at the Scottish Police College, and that there is training for procurators fiscal. Epilepsy Scotland is also developing training with the Law Society of Scotland. This is an important additional area to look at when considering future training and support.
13:31
As co-convener of the cross-party group on epilepsy, I thank Kenneth Gibson for securing a debate on this most important issue.
There is no doubt that in recent years the education system’s response to epilepsy has improved greatly on the lamentable attitude that was shown 50 years ago, when it was sometimes questioned whether a child with epilepsy should be in school at all. Of course, that was at a time when the education system also sometimes suggested that epilepsy was a mental illness. However, the cross-party group often hears evidence that the teaching profession’s knowledge of epilepsy could still be much improved.
I developed epilepsy when I was at secondary school, but I never had a seizure in school, so I cannot make many comparisons. For an anecdote about an inappropriate response to an epileptic seizure in an education setting, I have to turn to my time at university. I am sad to say that I recall that at a meeting of the student wing of the Scottish National Party in the University of Aberdeen, I had a seizure just as we were about to vote on some matter of internal politics that probably seemed vital at the time. I remember regaining consciousness after several minutes only to hear those at the meeting arguing earnestly about whether I could vote while unconscious, on the basis of the stance that I had taken earlier in the debate. I do not suppose that that was a textbook way to deal with the situation, but it is nonetheless an interesting question in its own right.
In primary schools, one of the arguments that was once offered against including children with epilepsy in mainstream education was that it would be distressing for other children to see someone have a seizure. Of course, the reality is that children get used to almost anything very quickly if they are not given reason to panic, but that, in turn, implies that the teacher knows what to do. As Mr Gibson’s motion states, the key is to “normalise the condition” before children have a chance to stigmatise it, which requires some basic understanding on the part of teachers.
Many teachers show such understanding, but it must be acknowledged that epilepsy takes many forms. Some forms of what used to be called petit mal epilepsy are easily mistaken for nothing more than very long lapses in concentration. I know of at least two children who went undiagnosed for years, because teachers just thought that they were not listening.
More positively, there is clearly a willingness on the part of many teachers to learn about the basics of what to do and what not to do in the case of tonic-clonic seizures. There is a similar willingness to find out about medication and the very individual warning signals of an oncoming seizure that many children will have.
Such increased awareness among teachers can only help to ensure that children with the less obvious forms of epilepsy get the early diagnosis that affords them the best possible chance of finding medication that will minimise symptoms.
If teachers are able to find out about all that as a routine part of their training, it would certainly help, as would on-going awareness raising for existing staff. It will be interesting to hear from the minister what is already happening in this area.
I congratulate Mr Gibson on focusing our attention on a condition that is remarkably common but still remarkably misunderstood. Following the launch in the Parliament only a few days ago of a guide for employers and employees on how to deal with epilepsy in the workplace, it makes sense to promote today a similar understanding in Scotland’s schools of the condition. I am sure that the Parliament will welcome further progress.
13:35
In congratulating Kenneth Gibson on bringing to the Parliament’s notice the importance of epilepsy awareness training, I must apologise to him for omitting to sign his motion. I assure him that that was the result of forgetfulness and that I support the motion whole-heartedly.
In this day and age, it is extraordinary that many people who deal with children day to day are unaware of the long-term conditions with which many children must learn to live, and of the impact that those conditions might have on their physical and social development.
Epilepsy is clearly a major condition, as it affects about one in 130 people. Each year, 800 new cases are diagnosed in Scotland, predominantly in people’s first two decades of life. I include asthma and perhaps type 1 diabetes as other common conditions of which awareness among teachers and fellow pupils can make an enormous difference to how a child can cope with their condition, and to understanding what a child must experience.
Awareness allows children to be regarded as normal, rather than their being stigmatised and singled out as being different from their peers. At meetings of the cross-party groups on epilepsy and on asthma, I never cease to be amazed at how much the lack of awareness of those conditions can damage the quality of life of those whom they affect.
Epilepsy seizures—particularly the grand mal type—are frightening to witness for people who are unfamiliar with them and are disturbing and potentially embarrassing for the sufferer. If teachers can identify what is happening and deal with the child calmly and with confidence, that is of great benefit to the child and to those who are around him, and it can promote understanding and acceptance of the condition, which are essential if the child is to be treated as an equal by peers.
As we know, children with epilepsy may exhibit many problems including anxiety, depression, problem behaviour and co-ordination difficulties. Research has shown that at least 50 per cent of affected children achieve less at school than would be predicted from their intelligence quotient. The National Centre for Young People with Epilepsy believes that about two thirds of children and young people with the condition who attend mainstream school underachieve academically in relation to their intellectual level.
It is therefore important for teachers to be able to detect and deal with epilepsy and its consequences, but their training is patchy and might occur only after a pupil who is in their care has been diagnosed with the condition. Epilepsy awareness training in schools can be—and often is—provided by a range of people, such as a school nurse, a local health-centre nurse, an epilepsy specialist nurse or a voluntary organisation, but it does not form part of student teacher training and it is not mandatory, so it varies from school to school. That is unfortunate, because knowledge brings a more compassionate attitude to people with epilepsy and a reduction in the stigmatisation of those who must live with the condition.
The ideal is obviously to ensure awareness of epilepsy and how to deal with it among all teaching staff: that would be best achieved in teacher training. Epilepsy awareness training and raising awareness of other childhood conditions, such as asthma, would sit well in a student teacher-training curriculum, which would result in more informed and sensitive treatment of affected pupils. That would enable such pupils to fulfil their academic and social potential and it would reduce the stigma that surrounds their medical conditions, which would allow them to be regarded as normal by their peers as they go through their schooling.
That is what Epilepsy Scotland asks for. I certainly do not think that it asks for too much, which is why I am happy to support Kenny Gibson’s motion. I hope that the minister will agree and I look forward to her response.
13:39
I thank Kenneth Gibson for initiating the debate. In a previous workplace, I worked with an epilepsy suffer called Jeremy, who was not a child but a young man of 18 or 19. I did not know that he had epilepsy until one day when I was with him in the canteen in Nigg, where oil platforms used to be built and—I hope—will be built again. On that day, he suffered a grand mal seizure. As a completely inexperienced young person, I was terrified to see that happen—I did not know what was going on. The table flew up in the air and the knives, forks and food were all over the place. In a way, I learned—with the rough coming first—how to try to help my friend Jeremy with grand mal seizures.
More personally, following a recent neurosurgical operation, my wife now suffers from petit mal. Alasdair Allan knows that; we have talked about it in the past. Her condition is controlled by drugs including carbamazepine drugs such as Tegretol. From experience, I know the importance of someone not forgetting to take their tablets. That applies to children in schools, too. There is also anxiety or stress, which can—despite the tablets—bring on petit mal or slight seizure. I speak from experience; I am a layman on the subject.
Within the brief time that is available to me, I want to draw members’ attention to what happens in the Highlands. Most but not all—the national health service does good work—of the advice, teaching and help in the area are provided by voluntary organisations. At this point, my old friend geography needs a mention—a mention that I have made many times in the chamber. We may well have the expertise in Dingwall, Inverness or Golspie, but try to reach out to a primary school near Cape Wrath at Durness or one at Canisbay near John o’ Groats and the miles clock up. It is no accident that we have a debate later today on fuel duty. Voluntary organisations are being squeezed more and more in terms of what they can afford in getting people out there. Who loses out? The sufferers. As other speakers have said more eloquently that I can, despite the best of intentions, there is still a lack of awareness about how to handle such situations. I am glad that at Nigg I was eventually taught how to handle my friend Jeremy to ensure that he did not hurt himself, particularly as he could be out for a bit.
This is my plea, Presiding Officer. It need not be much, but could some form of financial assistance—perhaps the Big Lottery Fund—be found to help voluntary organisations to reach out? There is no lack of good intentions in trying to help people with epilepsy; indeed, there is a measure of love in looking after them. There is huge goodness in people’s hearts, but they are hampered by Hamish McCunn’s “The Land of the Mountain and the Flood”, which are well nigh impassable, particularly when distances and inclement weather are taken into account. That is the problem that we face in the Highlands and Islands. That is the thought that I leave for the chamber in this excellent debate. Again, I congratulate Kenneth Gibson on introducing the debate.
13:42
I add my thanks to my colleague, Kenneth Gibson, for highlighting to Parliament the importance of ensuring that children and young people with epilepsy are provided with the support that they require and the support to which they are entitled to make the most of their educational opportunities. It is interesting to note that the prevalence of epilepsy is higher among children and very old people. It was interesting that Kenny Gibson informed Parliament that one third of children with epilepsy also have learning disorders. Today’s debate, which highlights the barriers that are faced by those with epilepsy in accessing learning at school, is therefore all the more important. Of course, we must remember that those barriers are faced not only at school but during future learning, skills development and employment.
Although the McCrone report specified that first aid and the administration of drugs should not be routinely carried out by teachers, I firmly believe that children and young people with epilepsy have the right to feel supported and valued at all times, unhindered by professional boundaries. As Kenneth Gibson highlighted, teachers spend a lot of time with children in school. Starting with initial teacher education, teachers must develop the core skills that they require to confidently enable the effective learning of all the children in their classes. Those core skills are set out in the standard for initial teacher education, as is the condition that all courses must be designed so that they prepare student teachers to be responsive to the needs of all pupils, including those with medical conditions.
As of earlier today, ministers no longer approve programmes for initial teacher education. Legislation was approved by the Education, Lifelong Learning and Culture Committee this very day, so that responsibility will be passed to the General Teaching Council for Scotland, which we believe is better placed to approve the detail of programmes of initial teacher education.
We must recognise the reality that students in our schools live with a wide range of serious conditions, and we must ask ourselves how realistic it would be for teachers to receive training in each of those conditions before entering the classroom. One strength of the Scottish education system is that each year our teachers are required to undertake 35 hours of continuous professional development and five in-service days. I hope that that ensures that each teacher is best equipped to meet the needs of their students.
Graham Donaldson recognised the issue in his recent and valuable report on teacher education. He pointed to the considerable evidence from universities, teachers, students and others that there is already significant pressure in relation to the breadth of the issues that must be addressed through teacher education. He made a number of suggestions for ways forward, but he did not suggest that there is a single clear solution. The Cabinet Secretary for Education and Lifelong Learning will soon set out his formal response to the report to Parliament, and will indicate how the Scottish Government will take forward the agenda.
I listened to Alasdair Allan with interest when he spoke of the actions that Epilepsy Wales is undertaking. I believe that the focus on health and wellbeing in the curriculum for excellence will enable many of the initiatives and good ideas to be taken forward.
Our schools must be communities in which our children—irrespective of their different abilities and needs—are able to learn and to achieve their full potential. Collectively, the whole school must take an holistic approach to supporting and meeting the individual needs of children with long-term conditions. That responsibility is set out in the comprehensive framework that is in place and which helps to ensure that, among other things, the needs of children and young people are identified as early as possible.
The additional support for learning legislation, getting it right for every child, the early years framework and the guidance on the administration of medicine all help to set the scene for the collaborative approach that is required, particularly between health and education, in order to ensure that all staff in schools are confident in their role in meeting the individual needs of all our children and young people, including those with epilepsy. It is important to note that our legislation and frameworks all point to the need for any child who has a difficulty to have one plan that all the various and relevant agencies sign up to.
I will illustrate our commitment to supporting improvement in the area. Through the national delivery plan for specialist children’s services, we are funding epilepsy services to increase the number of multidisciplinary staff and therefore to provide better all-round care to young patients. An example of that is a recently appointed epilepsy nurse in the Borders who is providing training to schools to raise awareness.
In closing, I again thank Kenneth Gibson for initiating this useful debate and pay tribute to the cross-party group on epilepsy, as mentioned by both Richard Simpson and Alasdair Allan. I take this opportunity to reassure the Parliament that the Government is committed to ensuring that every child and young person—irrespective of their needs—is provided with every opportunity to succeed and to reach their full potential.