Epilepsy

 

There is a huge amount of stigma surrounding epilepsy which can limit a person’s opportunities and create barriers in schooling and employment. Teachers need to know how to respond appropriately and proportionately whilst we need to remove the barriers that exist in the jobs market for those with epilepsy.
 
We in South Thanet have amongst the best services for people with epilepsy in the country. Our epilepsy specialist GPs help better manage the condition which has decreased the number of epilepsy related A+E admissions by 60%.  This is an example of best practice that we in Thanet should be very proud of. We should be working to replicate this model across the country.
 
As Chair of the Epilepsy All Party Group I am committed to moving this issue up the government’s agenda and getting a fair deal for those with epilepsy.
 

 
 
 

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 helpline@youngepilepsy.org.uk 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 was keen to involve the Prime Minister in the All Party Group work and she was very pleased that David Cameron offered to help raise the profile of epilepsy and tackle the stigma still associated with the condition.
 
Laura said: “This meeting marked an important turning point for those who suffer from Epilepsy. With the Prime Minister’s support for our aims to increase understanding of epilepsy we are moving in a very positive direction.  Early intervention and support for those with Epilepsy is crucial. Not only would immediate tertiary referral help address the potentially avoidable 1000 epilepsy deaths each year, it would save the NHS immense time and money and save patients a great deal of worry. Across Thanet, we have superb specialist epilepsy services – it is these which must be replicated across the country.

 

Sandys Joins Campaign to Raise Awareness of Sudden Death in Epilepsy
 
28th August 2011

 

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 contact@epilepsybereaved.org.uk

 

Disability should not define you as a person

16th December 2010
 
Over the last few weeks I have met with a lot of organisations that represent those with disabilities. From those who represent deaf children and want to ensure that they are getting the support that they need at school through to the national body representing sufferers of MS. It is really important for me to be on top of the issues that face local residents who have one disability or another. 

 

 

But what struck me was that when we had discussed some of the direct clinical issues that related to the condition, each organisation had a similar story to tell about their members. For those who are not totally incapacitated, people with disabilities want to be part of mainstream society.  If they can they want to be valued for what they can contribute, not always looked at as someone defined by their disability. 

 

 
A wonderful lady with MS and who is still working wants to be known as a senior health professional not a lady with a stick who finds walking extremely difficult.  The young girl who is 90% deaf wants to be seen as a young person with real prospects and a desire to go to university – not someone who is deaf and needs our sympathy.

 

 
We need to re-examine our approach to the many in our community who have chronic diseases or disabilities from birth.  They can be as much contributors to society as anyone in our community – and in several areas of life they might be able to achieve even more because of their condition. Active lives, being known as contributing to society and the community, and being valued as part of the mainstream in life is all crucial for those with disabilities. So I urge you to start to look at those with disabilities as people who matter and contribute first and only then recognise that they might not be able to hear, they may be blind or they may be suffering from a chronic disease. 

 

 
As someone with mild epilepsy, I hope to be regarded first and foremost as making a contribution to our community before any reference to any condition I might have. 
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