Hansard

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.