Schools are failing to meet their legal responsibility to make effective provision for pupils with epilepsy.
Since September 2014, state schools (including academies) in England have been legally required to support children with medical conditions such as epilepsy, diabetes and asthma. The Government published guidance which explains what schools should be doing to ensure these young people are both safe and included in their school communities. This means that all children with epilepsy should have an individual healthcare plan (IHP) and that school staff should be trained to meet their needs. Schools also need to take into account how a young person’s condition might affect their learning.
It is now three years since the legislation was enacted and earlier this year, Young Epilepsy conducted an online survey to test how the new legislation is working for young people with epilepsy. The aim was to find out whether schools are providing support that complies with government standards. In total, the survey received 661 responses, 373 of which were young people with epilepsy (11 per cent), as well as parents and carers of young people with epilepsy (89 per cent), who attend state schools in England. The vast majority (93 per cent) represented a young person at a mainstream school.
Upon analysing the results, it was clear a significant number of responses suggested state schools in England weren’t following the Government’s guidelines. The survey found only 45 per cent of respondents said their school had a medical conditions policy. This figure adds weight to recent findings from the Health Conditions in Schools Alliance (HCSA) that 47.5 per cent of schools had a policy in place. The HCSA also found, when they analysed these policies, only 11.5 per cent of schools had a policy which complied with government standards.
Government guidance states that a school’s medical conditions policy should be “readily accessible to parents” but 49 per cent of respondents did not know if their school had one in place. One parent said: “I’ve never been given any information about how the school supports pupils with epilepsy.”
Government guidance also advises schools that IHPs are essential for conditions which fluctuate, or where there is a high risk that emergency intervention will be needed. Epilepsy certainly meets this criteria, so it could be anticipated that all children affected by the condition would have an IHP.
However, the survey found one in three young people with epilepsy still do not have an IHP at school (36 per cent). This means schools do not have the information they need to keep these children safe and included at school. An IHP for a child with epilepsy should include, for example, a description of seizures and what to do in an emergency.
Epilepsy can have a profound and wide-ranging impact on children. Research completed by Young Epilepsy in 2014 found 95 per cent of children with epilepsy experience a level of significant difficulty in learning and in regulating their emotions and behaviours. These needs are not being addressed in children’s IHPs; the recent survey showed two out of three plans do not consider how epilepsy might affect learning (67 per cent), focusing often on medical management of the condition.
Schools are required to provide suitable training to staff who support children with medical conditions. However, only 51 per cent of people who responded to our survey said school staff had been suitably trained to support a child with epilepsy. Some parents highlighted a lack of understanding of the impact the condition, and medication used to control it, can have on young people’s learning. “If it wasn’t for me pushing and demanding that they be aware, our son would be at risk every day”, said a parent responding to the survey. “Training was given by me as the school felt money could not be spent on ensuring the safety of our child.”
One of the aims of this survey was to uncover the extent of stigma surrounding epilepsy. Schools are required to ensure young people with medical conditions are supported to enable them to have “full access to education, including school trips and physical education”. However, the survey revealed that one in six young people with epilepsy (18 per cent) are excluded from activities at school. These include assemblies, outside break times, swimming and other sports, after school clubs and school trips. One young person, who responded to the survey, was excluded from a particular subject because lessons were held upstairs. In another instance, however, a school was able to move lessons downstairs to accommodate a young person with epilepsy.
While some young people with epilepsy are unable to take part in activities due to specific medical advice, in most circumstances they can be included with the right support in place. Under the Equality Act 2010, young people with epilepsy are protected from disability discrimination. Schools are also required to make reasonable adjustments for disabled young people to ensure they are not at a substantial disadvantage, compared with their peers.
In addition to schools’ own responsibilities, local authorities are required to provide home-to-school transport for children “who cannot reasonably be expected to walk to school because of associated health and safety issues related to their special educational needs or disability”. However, the survey found one in six families (17 per cent) are concerned about home-to-school transport for young people with epilepsy. This rises to one in three (34 per cent) for young people at secondary school (eight per cent for pupils at primary school). This older group are often expected to travel further and/or independently to get to school.
A number of families also spoke about their concerns that seizures might go unnoticed on school transport. They have had to adjust their schedules to enable them to take their children to and from school. “I don’t get the school bus anymore. I don’t know what they would have done if I’d had a seizure on the bus”, said one young person.
It is clear schools and local authorities must work together with families and healthcare professionals to ensure children with epilepsy are given the support they need. We urgently need:
all schools to have a policy on supporting pupils with medical conditions and for these policies to be published on schools’ websites
school inspections to include a routine check for support for pupils with medical conditions
schools to ensure all young people with epilepsy have an IHP.
These three aims are achievable. If we all work together, we can create a better future for young people with epilepsy and other conditions.
Carol Long is CEO of Young Epilepsy:
The charity is a member of the Health Conditions in Schools Alliance. This alliance is made up of over 30 organisations including charities, healthcare professionals and trade unions working collaboratively to try to make sure children with health conditions get the support they need at school: