Sandys Fights Stigma Around Epilepsy
20th May 2013
“43% of people think that Epilepsy Sufferers like me are Mad, and 20% think that I am Possessed”
Laura Sandys, MP for South Thanet, welcomes the start of National Epilepsy Week.
Laura said: “Having epilepsy myself, I can understand the concerns surrounding this condition. In the 21st century we cannot have a condition like epilepsy attracting so much stigma. It is the most common neurological condition in the UK, and affects more than half a million people. Sadly too many people experience exclusion and bullying because of the condition. I strongly support Young Epilepsy’s campaign in the hope that it will increase public understanding to help dispel myths, such as someone with epilepsy being possessed by evil spirits or even being contagious. I firmly believe that talking and educating is the way forward.”
Children with epilepsy face discrimination, nastiness, exclusion and taunting on a regular basis, with many facing prejudice more akin to 1913 than 2013, according to a report released today by charity Young Epilepsy to coincide with National Epilepsy Week (19-25 May 2013).
Epilepsy affects 600,000 people in the UK, 112,000 of which are aged 25 and under. The report, which questioned adults and children with epilepsy, as well as members of the public, on their attitudes to the condition, found that 79% of people with epilepsy across all ages are the victims of discrimination and there is particular concern for young people about their ability to cope with negative reactions. Almost half of children with epilepsy encounter nastiness or ill feeling because of their condition, almost one in five at least once a day. More than 40% have experienced discrimination or exclusion from their peers, and more worryingly, almost a third feel that they have faced discrimination from teachers.
Negative reactions from others after a child suffers a seizure include being told they are sick (41%), being called mad or crazy (43%), being told that epilepsy is contagious (29%), being accused of being possessed (20%), being asked if they can speak to spirits (18%) and being told they should be locked up (16%). This can have a devastating impact on childhood as almost 60% of children avoid going to certain places because of the discrimination they have experienced about their epilepsy.
As a result of the discrimination and prejudice they face on a daily basis, there are growing concerns that children with epilepsy will be less inclined to discuss their condition in the future. In fact, this is a trait that seems to ring true of people with epilepsy of all ages, with 55% of the adults questioned with the condition saying they never disclose their epilepsy to new people they meet because of discrimination or fear that they might get a negative reaction.
Young Epilepsy has launched a text helpline service for anyone who is affected by epilepsy, Text 07860 023 789, email firstname.lastname@example.org or call 01342 831342.
Sandys Presents Award for Young Epilepsy Sufferers
28th March 2013
This week Laura Sandys MP, Chair of the APPG for Epilepsy and a sufferer herself, had the chance to meet with young epilepsy sufferers at the Young Epilepsy Champion Awards in City Hall.
Speaking after the event, Laura said: “It is brilliant to see such fantastic work going on all over the country with people of all ages coming together to improve the lives of young people with epilepsy. It was an absolute pleasure to present the Gold Champion Award to Milly Power for her inspiring work raising awareness of this condition.”
With epilepsy affecting half a million people in the UK, The Young Epilepsy Champion Awards are a chance to recognise those who have inspired someone, made a difference to the life of someone living with epilepsy or helped to raise awareness and improve the lives of young people with the condition.
For further information, please visit youngepilepsy.org.uk or follow Young Epilepsy on Twitter @Youngepilepsy, Facebook/YoungEpilepsy or Youtube/YoungEpilepsy
Laura Calls For Implementation of Epilepsy Action Report
26th March 2013
Sandys Says “Epilepsy is still a Cinderella Condition”
Laura Sandys MP today called for the implementation of Epilepsy Action’s latest report and joined people with epilepsy across the country to celebrate the international epilepsy awareness day: Purple Day.
An epileptic herself, Laura said: “With 87 people being diagnosed every day, it is vitally important we continue working hard to stamp out the stigma of epilepsy and increase the research budgets for such a prevalent condition. Epilepsy Action’s recent report, ‘A Critical Time’ highlighted numerous ways epileptics are being overlooked across the country – this is clearly not good enough.”
“Today on Purple Day, I am calling for the Government to implement these recommendations, including:
· Clinical Commissioning Groups carrying out ‘epilepsy needs’ assessments for their local areas.
· Local Authorities’ Health and Wellbeing Boards including a section on epilepsy in their Joint Strategic Needs Assessment.
· Primary care clinicians reviewing and referring their adult patients to a specialist to ensure they get the most appropriate treatment.
Laura chairs the All Party Parliamentary Group for Epilepsy and continues to work with and support many charities like Epilepsy Action to carry on their vital work in supporting the 600,000 people with epilepsy across the UK. If you would like to know more about Purple Day, or the work of Epilepsy Action, please visit www.epilepsy.org.uk/purple-day, or call 0113 210 8800.
We're MPs, we're epileptic and we're climbing Big Ben
26th March 2012
There are few things that individual MPs can do to change public opinion positively. But today Paul Maynard, the MP for Blackpool North, and I are going to try and do just that. We want to raise the profile of epilepsy and reduce the stigma around it by climbing up Big Ben – something that has been out of bounds for epileptics for 150 years.
We are both epileptics and are the first MPs – and currently the only MPs – to declare our condition. We have a sneaking suspicion that, statistically, there should be another four MPs at least with epilepsy. But obviously these reticent Members of Parliament are waiting for a time when there is no prejudice attached to declaring to the world that you have had the odd fit or two.
Epilepsy has suffered from a bad press – a very bad press, in fact. People recoil when you say that you are epileptic, expecting you to drop to the floor and start foaming at the mouth. Caricatures of madness often depict people having seizures, and the 19th-century association of mad houses with people convulsing is still linked to epilepsy.
Epilepsy covers a very wide variation of symptoms. Some people have multiple fits all day and every day that are life-threatening, and others are fit-free and are totally managed through medication. But, whatever the nature of one’s epilepsy, we are all similarly impaired by the stigma surrounding the condition.
I remember my last seizure very well as I did it in front of my husband-to-be, virtually the first time I met him. I am extremely glad that it didn’t put him off and I am also very pleased that it didn’t deter the 73,000 electors of South Thanet either. But while I'm unlikely to have another seizure, there is always lurking a nagging possibility that it could happen … at Prime Ministers Question Time!
Climbing up Big Ben is not the answer to anyone’s epilepsy, that is for sure, but it does aim to convey a clear message: while we may have seizures, while we may have the most common neurological condition, we are neither mad nor should be treated as freaks.
Laura Meets Prime Minister to Call for Improved Epilepsy Services
1st November 2011
Laura Sandys MP – Chair of the APPG for Epilepsy - met with the Prime Minister to discuss the need for improved health and education services for people with the condition. Alongside, Valerie Vaz MP and the Joint Epilepsy Council, Laura urged the Prime Minister to consider Valerie Vaz’s epilepsy Ten Minute Rule Bill. The Bill would require immediate tertiary referral and schools to draw-up action plans for children with epilepsy.
Laura Sandys MP, Chair of the All Party Parliamentary Group for Epilepsy, today welcomed the report into sudden death in epilepsy (SUDEP) by Sheriff Alistair Duff.
The report is the culmination of an inquiry into the death of 2 young women – 19 year old Erin Casey and Christina Ilia –who both tragically died in their sleep due to epilepsy. The findings urge medical professionals to explain and educate their patients on the possible risk of sudden death amongst a small number of epilepsy sufferers. It also calls for the instructions and labeling on anti-epileptic medication to be simplified to help patients manage their condition with ease.
Laura, who has a mild form of epilepsy, said: “It is not scaremongering to suggest that those with epilepsy should be informed of the rare possibility of sudden death, it is common sense. Patients need to be in command of the facts to ensure they can live an as normal and fulfilled life as possible. It is totally unacceptable that the families’ of the two young women profiled in the report only learnt that death could occur in epileptics once it was too late.”
“The report’s recommendations should be taken on board by health professionals across the country. Certainly our epilepsy services have come on leaps and bounds in recent years, but we still have some way to go to heighten knowledge and awareness and to ensure patients have equal access to epilepsy specialist services.”
Laura supports the work of Epilepsy Bereaved. If you have lost a loved one to epilepsy, please contact their bereavement support line. The team offer support and information which could help. Tel: 01235 772 852 email@example.com
Disability should not define you as a person