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of everyone affected by epilepsy

 

Our new study on UK attitudes towards epilepsy

14 Feb 2019

What does the UK public understand about epilepsy? And what kind of attitudes do they have towards people with the condition? These were just some of the questions a new Epilepsy Action research study set out to answer. We wanted to shed light on stigma and understand more about people's beliefs about epilepsy in the UK. We teamed up with researchers at Bangor University to gain clear and current evidence and a deeper understanding of public attitudes towards epilepsy.

We know from many of our members that people with epilepsy report experiencing stigma, prejudice and discrimination. This can be enacted stigma, where people are treated unfairly by others. Stigma can also be ‘felt', when people's feelings of worry and expectations of discrimination stop them from talking about their experiences and seeking help. Felt stigma can be as harmful as enacted stigma as it can lead to withdrawal from society and further feelings of shame or depression. This is something Epilepsy Action needs to tackle. Through the research, we wanted to find out whether stigma is mostly felt or enacted – or both – in order to develop appropriate ways to tackle the issue. The research is also an important way for us to be able to measure the change in public attitudes towards epilepsy over time.

Around 4,000 people in the UK were asked to share their views and knowledge about epilepsy, on topics from driving and work to family life and relationships. Here are the headline findings from their responses:

Risk and safety concerns

This topic looked at attitudes towards driving and looking after children and was the one which most divided opinion. Half of people said they would not let their child ride in a car with a driver who has epilepsy. Almost half said they would feel uncomfortable if their child rode in a car with a driver with epilepsy. And just over a third of people said they would not employ someone with epilepsy to babysit their child.

Personal fear and social avoidance

Stigma was relatively low in this category. People's responses showed they would not be embarrassed if someone in their family had epilepsy. Most also said they would be happy to work with or date someone with epilepsy. However, a quarter of people said they would be afraid to be alone with someone epilepsy. And just under a quarter said they would be nervous to be around a person with epilepsy in the event of him or her having a seizure.

Work and role expectations

Stigma scored relatively low in this area too. Most respondents said they believed people with epilepsy can be as successful as others at work and can lead ‘normal' lives. However, around a quarter of people said they believe there are many work activities people with epilepsy cannot do safely that others can.

Negative stereotypes

This category scored the lowest for stigma. People were asked questions such as if they thought people with epilepsy were less smart than others, or whether they shouldn't marry or have children. The results showed most people disagreed with the statements.

So what have we learned?

The research study found that the average person in the UK has a largely positive attitude towards people with epilepsy. This is encouraging in many ways, showing we have evolved into a more tolerant and accepting society towards people with disabilities.

However, the research also showed that 10 in 100 people had a negative attitude towards people with epilepsy and 1 in 100 had a very negative attitude. It is worrying to see that negative attitudes towards people with epilepsy still persist in this day and age. We need to close this gap to ensure people with epilepsy are no longer treated unfairly because of their epilepsy.

In many cases, such as driving, it's understandable why people may have more negative attitudes towards epilepsy. But this just further highlights the need for more education to show there are many ways to overcome the challenges of living with epilepsy. We know from the results that fear and lack of understanding are major drivers behind discrimination and stigmatising attitudes. This research is also important in telling us what people know or believe about epilepsy and the impact this has on people with the condition and their loved ones.

We want this research to kickstart conversations about epilepsy, to challenge myths, improve knowledge and stamp out the fear and prejudice we know still exists. There are many ways Epilepsy Action is here to change this. These include school and workplace training, and providing first aid advice so people can feel more confident in helping someone with epilepsy.

Epilepsy Action will be using the research to inform the organisation's future work. What do you think about the results of this study? Do you have a story to tell about being discriminated against or feeling stigmatised? Or do you have a positive experience to share about your epilepsy? Get in touch and let us know – email press@epilepsy.org.uk

The study was carried out by Dr Emily Holmes, Siobhan Bourke and Dr Catrin Plumpton at Bangor University. It consisted of an online survey of 3,875 people. The sample of people represented the UK based on population characteristics such as age, gender, ethnicitiy and education. Read the full study findings here: www.seizure-journal.com/article/S1059-1311(18)30684-8/fulltext

Comments: read the 15 comments or add yours

Comments

From 2016, I found myself in the situation of working in a succession of temporary warehouse roles. This marked a return to work following 6 years of unemployment, due to both the severity of my epilepsy, and a lobectomy to relieve the symptoms. Consequently, following 25 years of working for a central Government body, my contract was severed due to ‘limited efficiency on medical grounds’.
After 3 years, I began a succession of temporary warehouse roles. I eventually applied, via a recruitment agency, for a position at the Swindon Amazon depot. I initially failed the stipulated drug test, due to the barbiturate content of Clobazam. When I disputed this, I was told that: ‘Amazon don’t employ epileptics, due to an ‘incident’ at their Bristol depot.
I did not consider that I had sufficient grounds to argue this decision.

Submitted by Steve Dawson on

Dear Steve

Thank you for your comment.

Companies should not automatically ban people with epilepsy from applying for a job. They cannot ban everyone with epilepsy because of a previous experience.

When you apply for a job, employers aren’t generally allowed to ask you questions about your health before they offer you the Job.  However, employers are allowed to ask questions about your health or any medical conditions before they offer you a job, if they have a good reason. This might be because they need to make a reasonable adjustment for your job interview or for an assessment. Or, the employer might need to know if there are health and safety reasons why you couldn’t do the essential duties of a specific job, such as working at heights.

Due to your diagnosis of epilepsy you are likely to be covered by the Equality Laws (Equality Act in England, Scotland and Wales and the Disability Discrimination Act in Northern Ireland). This means employers must not discriminate against you unless they can justify this. They do have to take health and safety into account – yours and their other staff – but they should weigh up all the facts about your epilepsy very carefully. For example, if you haven’t had a seizure for a long time, and are on medication, how likely is it that you will have another one?

Whatever the decision, they should do their best to make sure that you are not put at a disadvantage because of your epilepsy.

For more information on epilepsy and working please visit the work section of our website 

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

We need to speak/communicate on tv more about all aspects of epilepsy to bring it into society; we talk about it, but society needs more input like there is with other conditions such as Cancer etc.. break that stigma & discrimination!

Submitted by Mandee Smith on

on the question of negativity i would have liked to have known if the sample was large enough where the major negativity was in the population so this could be more agressively targeted.

before my sezures wre controlled my wife did say that she would feel very uncomfortable with my driving the car. She now on long journeys is asleep most of the time. The motto: opinions can change.

Submitted by PETER J SPRECKLEY on

Almost half said they would feel uncomfortable if their child rode in a car with a driver with epilepsy.???????
Its illegal to drive a car with epilepsy. my wife has drop seizures and regular there no way she would get behind a wheel nor anyone would want to get in with here ..is this a joke am I missing something? Is it April 1st ? Thought this was to bring awareness to epilepsy ?

Submitted by Bern1e4kb on

Reading this comment made me realise there is LACK OF EDUCATION ON EPILEPSY..Yes you can DRIVE so long as you are SEIZURE FREE OVER 4 YEARS...And yes being EPILECTIC & 4 YRS SEIZURE FREE & A Grandparent myself i would not Drive with my grandchildren in my car IITS CALLED LOVE NOT APRIL FOOL..I think because AND I QUOTE: PEOPLE WITH EPILEPSEY LOOK NORMAL :: THIS IS WHERE EDUCATION LINKS IN : START LEARNING READING LISTENING WRITING DONT GO BY WHAT OTHER PEOPLE THINK SAY OR WRITE REMEMBER ITS THEM THAT NEED EDUCATING NOT YOU..

Submitted by Lesley on

Hi it is one year for a normal driving license and a private pilots license in UK. The life long ban is for international commercial pilots and combat personnel. There is a many year wait for commercial drivers depending on whether taxi, lorry, crane or Bus etc...

In some states in US the band is for a few months because there is no other way to get around which is literally madness.

Submitted by Nigel on

I never drove while being investigated for epilepsy but on being told to hand in my license I was devistated but I fully understand why but I was told by my consultant that I would be capable looking after my then only grandson I am happy to say I have had12 years & 3wonderful grandsons to bring up daily they have all been aware of when nana was tired after an absence seizure & I just went to have a nap when they did I do hope this gives someone else to continue like I did thnx for the opetunety to air my views GOOD LUCK to all g/parents & parents

Submitted by Karen wray on

I have suffered from epilepsy for the last 12 years - I am now 70 - and have regular tonic/clonic seizures as well as some "absence" seizures from time to time. My comment here is due to the subject of driving when suffering from epilepsy. Exactly like the comment just before mine, I was also completely taken aback by there being ANY question of someone with epilepsy continuing to drive!!! As quoted there - it is (understandably!) totally illegal to drive whilst suffering from epilepsy; the qualification is that you have to have been completely seizure free from a full 12 months at which time you can consider starting to drive once again. My thought on this is that, no matter how distressing it is to have to stop driving , it is that, even with only absence seizures, you would still be a danger on the road - even a few moments of "absence" could well prove fatal, not only to you as the driver but to passengers and anyone else on the road at that time! As far as I know there is only one possible exception to all of this and that is if you have ONLY nocturnal seizures.
How can anyone even consider for one second allowing their child to be in a car with a driver who has epilepsy - even if their seizures are "under control" with medication. That is insane! I have other comments to add to these survey results - al much more positive but I think I have ranted on long enough for the moment!!

Submitted by Margaret Hay on

Hi

Thank you for your comment. Epilepsy is a very varied condition and affects everybody differently. This is why some people with epilepsy are safe to drive and can hold a driving licence. For example, some people only have seizures when they are asleep, some people only have seizures that don’t affect their consciousness and some people have their seizures fully controlled.

If someone has epilepsy, whether or not they can drive depends on the type of seizures they have. As well as meeting the specific driving rules for their type of seizures, they must also meet the following conditions:

  • As far as they are able, they follow their doctor’s advice about their treatment and check-ups for epilepsy and
  • The driving agency is satisfied that as a driver they are not likely to be a source of danger to the public

We have more information on the driving rules here.

Regard

Jess

Epilepsy Action Helpline Team

Submitted by Jess-Epilepsy Action on

I retired recently but have found the government and DWP clueless when helping us into work. Disability laws don't work as time and again I've heard many invented escape excuses from employers upon discovering I had epilepsy. Therefore for years I lied and denied I had any disability whilst working in the building trade as a carpenter until I had a major seizure at work and was badly injured. Whereupon the DWP stopped me from doing any more of this type of work yet failed to help me into any other work and upon retirement Capita (PIP) assessed me perfectly fit based upon physical looks and thus I lost my disability benefits.

Submitted by john Carnan on

THEY TOOK ME TO THE HOSPITAL, AND AFTER FINNISH ME WORKING FOR THEM I WAS ONLY 61YEARS AT THE TIME THAT MY SEZURES STARTED.

Submitted by christine rattenbury on

Hello everyone. I've had epilepsy after suffering a stroke in 1998. I'm sorry to buck what appears the general consensus but I've found no problem living with it over the years.
Apart from surrendering my driving licence more than once, I've lived a full and at times a pressured life, including working in a prison for teenagers for seven years!
I've been made redundant twice and unemployed three times and worked as a temp in factories.
I always tell people I have epilepsy (last fit in 2002) with no adverse reaction.
If anything, as Epilepsy Action continues to use the word Stigma, then to my mind it perpetuates public perception of the condition.

Submitted by Andrew Smith on

When I was leaving college & went for an interview for a job,I was virtually offered the job until my interviewer read that I had stated on both my application &c.v. that I was epileptic. His attitude changed completely & was using every excuse in the book not to employ me;when I told my Disablement Resettlement Officer at college he hit the roof,rang the company up & tore them off a strip in no uncertain terms.
Least to say ,they did not offer to take me back. as did the the DRO at the Dept. of Emplyment

Submitted by Phil on

I developed Epilepsy in 1985 at the age of 14. I suffered many seizures and had developed primary generalised Epilepsy, juvenile myoclonic Epilepsy and Petit Mal. I was illegally expelled from school with no social services or Police present at 15 years on the 29/09/1986. The action taken by Social Services at the time was 'Aim achieved' at 'going back to work' at the age of 15. This left me with no O'Levels and I was refused the possibility of attending another secondary school to complete my Education. The reasons given were 'Behavioural Difficulties' not 'Epilepsy' . This completely destroyed any future and prospects I could have had.
I now find myself in 2019 battling the same Stigma and being discriminated against and victimised. I live in South Wales, UK and recently the manager of my local Job Centre and his colleagues sent a letter to all I deal with in local authority saying 'I pose a threat'. I eventually, after waiting a month retrieved CCTV footage to prove this was not the case. Still no apology regarding this has been issued and the statement remains un-retracted . I am a full time Carer for my son who has severe Autism and requires 1:1 support, as a result of not being warned of the dangers of AED's in pregnancy.
I am also facing a Tribunal where the DWP removed evidence of my attending the Job Centre for ESA interviews twice in 2014 and based a case on these inaccuracies. I have retrieved both these interviews and will be facing this Tribunal very soon. Information and entitlements have been concealed from me for many years now and my partner and I are fighting a long battle to get this out in the open.
We have faced discrimination from the the Police and other Government Departments and think it is high time attitudes towards Epilepsy (especially in Wales) are rethought and instead of excluding myself and other individuals with my condition from Society to Including them and treating us equally.
This is my experience of Epilepsy.

Submitted by Eve Spiccelli on
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