BBC documentary about young people with epilepsy

[AmyBadd]

I just watched this documentary and I thought some of you might be interested, too.

bbc.co.uk/iplayer/episode/p...

[Hidden]

Hi Amy, thank you for the link.

Regret am unable to watch - BBC for U.K. viewers only... I am based in South Africa. Would have liked to view it.

Regards,

Les

[Jenny25]

Did any one else find this program slighlty frustrating? The people featured were admirable and all credit to them for managing their lives with severe epilepsy. However I wish the BBC had shown a more balanced approach. There are many many people out there with the condition who lead very normal lifes. Live alone, work, drive etc. By only showing an extreme severe cases I felt the BBC was reinforcing a stigma that many people hold towards epilepsy. I have come across people who are very wary of the condition and frightened and believe you cannot live a "normal" life. There are many people out there who are well controlled and I think it would have been helpful to also show how they cope with the condition.

[pmag_82 in reply to Jenny25]

I thought exactly the same! Mine is well controlled and unless I told people, most would never know I had the condition. However, as I still take the medication I have to declare it when asked at job interviews etc and I have found that there is still a great stigma attached to the word 'epilepsy'. I have nothing but admiration for how the people in the programme coped with what seemed to be a very challenging day to day life and it made me realise how lucky I am to be in my situation as many people are never completely seizure free. However, I do think a more balanced approach would have dispelled some of the stigmas attached to the condition and raised awareness on epilepsy as a whole not just of the most severe cases.

[AmyBadd in reply to pmag_82]

Hi, I just asked my husband who is a human resources advisor about your job interview comment.

Actually you don't have to tell anyone about epilepsy (or anything else that classes as a disability), it is protected information. If they ask you, they could be taken to court for discrimination. The only exception is where your disability would not allow you to carry out the job safely (not a nice example, but maybe a bin lorry driver).

This document contains more details:

gov.uk/government/uploads/s...

Hope this is helpful

[jules1973 in reply to AmyBadd]

Erm there are lots of jobs out there where safety comes first like being a doctor or nurse down to being a paper boy every single job has an element of risk wether that be crossing the road or dealing with computers

[AmyBadd in reply to jules1973]

Yes, that is true, but the comment that was made was that "I have to declare it when asked at job interviews". This is not the case. If they ask you (unless you would not be able to do the job) then they might be discriminating and you do not have to answer and can report them.

Personally, I let them know as soon as I have been offered a job.

[Whyme89 in reply to AmyBadd]

One other thing to note, for people with epilepsy, is that being allowed 'more time' can be classed as a reasonable adjustment when starting a new job. As epilepsy effects a lot of people's memory. I didn't know this myself until I found out more information. I always assumed reasonable adjustments were something physical/visual.

[Toomuchsynchrony in reply to Jenny25]

Absolutely, I've thought this about almost all of these documentary's.

90% of them seem to be about children or quite young people with relatively severe epilepsy. I guess it is a bit more dramatic, but definitely not an adequate representation of the community.

[rustypen31]

I thought the documentary was unsatisfactory. It was only about people in the upper middle class sector of society so shunning sufferers with many more problems. I too suffer from epilepsy.

[AmyBadd]

Personally, I enjoyed the documentary and found it moving and upsetting. This was mostly because, while each of the young people featured had slightly different experiences to myself, there were things in there that I recognised. I used to have a lot of absence seizures and TCs every few weeks, too, although they put me out of action for hours afterwards, unlike the young man on the show.

It did annoy me that, as has already been commented, they all came from a certain sector of society and seemed to have options available to them that not everyone would have. I had never heard of the kinds of facilities mentioned on the show, but I suppose my learning dos not suffer as much as theirs had.

I also agree that it would have been nice for them to put more facts in about the general population of epilepsy sufferers. They did quote a number in the UK, but didn't really make much of a comment on the fact that most of us live fairly normal, fairly independent lives. They did feature a young lady who was controlled and was learning to drive, so perhaps that was something. However, I'm not sure they had their facts right on that. They said you had to go 3 years without a daytime seizure to get a licence. I thought it is only one? I did apply last year (although then had to cancel the application as I had a TC weeks after posting it)! I don't think I will ever learn to drive now. After being completely seizure free for 7 years and then having a break through seizure... I couldn't put other road users at risk in that way.

Overall, I thought it was good. Remember that it was only an hour and epilepsy is so diverse, and they were trying to make a good TV show appealing to young people (BBC 3 target audience).

[AmyBadd]

I thought that the ketogenic diet had only been proved to be effective in a very small number of children and usually needs to be supplemented with medication also? In terms of representing people with epilepsy, the vast majority of us depend on medication. Ketogenic diet is usually only considered if medication does not work on its own.

[AmyBadd]

Thanks for this information. I will have a look at the film when I have some time.

Some things to bear in mind, though. A hundred years ago epilepsy was shunned a lot more than it is today and many sufferers would have been hidden away or disowned (so likely any data we have is incomplete). Most of the drugs that are used for epilepsy are fairly recent discoveries and certainly those that have few or rare side effects. I think you are right people should be given more information but in today's world (and something else that is different from 100 years ago is that we don't make all our food from the raw materials, so it's a lot harder to tell what's in it) I believe most people would choose the convenience of medicine, if there was one that controlled their seizures.

I would like to see what clinical trials have been done to compare the diet to different meds. (I am a clinical trials statistician so these things interest me a lot more than most people!!)

Thisnis something else that maybe would have been covered if the BBC had a whole series, rather than just a one off, along with other things that have been mentioned, but alas, I doubt there is a big enough audience to make it worthwhile for them.

[Hidden]

I would have liked to have watched... Regret only viewable for people in the UK. Why not worldwide?

[AmyBadd in reply to Hidden]

I think because in the UK BBC tv is paid for by licence fees. However you don't need to be a licence fee payer to watch these online!!! I expect this will change soon as a lot of people are now using it as an excuse to not pay licence fees.

[Hidden]

Hi Amy, Here in South Africa most people have to pay for a TV licence... It would have been interesting to view, but not to worry.

Have a good day.

Les

[jules1973]

I saw a small part to be perfectly honest i bet there are some of you who has epilepsy more severe than was broadcast she even managed to drive something i never have been allowed to as i was having up to 8 seizures a day and it was refractory nothing worked apart from the brain surgery i had in 2013 seizure free since

[AmyBadd in reply to jules1973]

They had a boy on who was considering brain surgery, but he said he only had "mild epilepsy". I'm not sure what sort of seizures he was having (maybe complex partial - I don't have these so don't know) but he had three in the four days they were monitoring him.

I was quite surprised that the girl who only had absence seizures (about 3 a day) was going into a care home. I think so long as she did not live alone she would be fine. I think maybe it was worse because of the other illnesses she had as well, but they made out it was because of the epilepsy. I used to have a lot of absence seizures and although they were not pleasant I could probably have lived with them alone. It was the tonic clonic seizures that ruined my adolescence.

[AmyBadd]

Oh yes thanks. I have only had 2 in the last 8 years. I am very lucky