Epilepsy

minigirl762003

My husband has epilipsey and was claiming DLA. However recieved a letter today to say that they have reviewed his claim and he will now be getting NOTHING. So he has gone from higher rate of care and lower rate of mobility to nothing!!!

He has grand mals which can happen at any time. He is currently uncontrolled even though he is on medication and has had 3 fits this year (may not seem many but scary enough)

We are currently appealing the decision and have asked for copies of the reports from his GP and specialist.

Really upset as we did sort of reley on this money and are now £370 worse off.

If anyone has any advice it would be greatly apprieciated

Thanks

[Deleted User]

I feel for you, happened to me when I was about 19. All I can advise is appeal and get help with it, CAB, Disability advice centre etc. The problem with epilepsy is that for part you are ok, it is unseen, nobody knows. The worry for the person with it and carers is they always have to be aware, it can happen at a moments notice even if it hasnt not happend for a week. You always have to plan work, activities, medicines etc etc around the epilepsy. This has to be stressed on the forms.
Fingers crossed for you if you appeal it.

Shel

minigirl762003 wrote: »

My husband has epilipsey and was claiming DLA. However recieved a letter today to say that they have reviewed his claim and he will now be getting NOTHING. So he has gone from higher rate of care and lower rate of mobility to nothing!!!

He has grand mals which can happen at any time. He is currently uncontrolled even though he is on medication and has had 3 fits this year (may not seem many but scary enough)

We are currently appealing the decision and have asked for copies of the reports from his GP and specialist.

Really upset as we did sort of reley on this money and are now £370 worse off.

If anyone has any advice it would be greatly apprieciated

Thanks

jules999_2

Hello, first post on the site though been watching for a while and a member for a few weeks.
My son has uncontrolled epilepsy, first seizure a week after the MMR at fourteen months and seizures ever since, he's seventeen years old next month. Five seizures today and two lot's of midazolam to help. He's a happy little soul though has seizures most days and also has autism and SLD's.
He gets DLA at the highest for help getting around and care and also recently claimed incapacity benefit under the special rules for youths.
Just wanted to say I like the new disability and dosh forum and feel it will be very helpful to people.

sixtyplus

My husband is on medication for nocturnal seizures (had 2 within in 3 months at age 65, nothing before that). The Carbomazapine is doing a good job, but it never takes away the worry and, as posted elsewhere, he cannot swim alone; advised not to climb ladders; gets very tired so we have to be careful and share long car journeys etc. Would we qualify for Carer's Allowance does anyone think?

peediedj

son has bad seizures,he has had 4 that have lasted 2 1/2 hrs long,so even though on meds for it is hard to control

[Deleted User]

sixtyplus wrote: »

My husband is on medication for nocturnal seizures (had 2 within in 3 months at age 65, nothing before that). The Carbomazapine is doing a good job, but it never takes away the worry and, as posted elsewhere, he cannot swim alone; advised not to climb ladders; gets very tired so we have to be careful and share long car journeys etc. Would we qualify for Carer's Allowance does anyone think?

If he gets DLA his carer, you or someone else can claim if they meet the criteria, ie spend 35 hrs caring which is easy done with epilepsy as you always have to be watching, waiting and then dealing with siezures and after effects.

But that does not mean you will get any money, just an entitlement! The amount given to carers is very poor and if you work and earn over a small ammount you wont get it, if you get other benefits you may not get it.......But....the "underlying entitlement" qualifies you for other things so you should apply anyway even if you wont get any money. My OH claimed and does not get the money just the entitlement, but if we had to go back on benefits it could give premiums, more entitlement to housing allowance etc etc.

Carers allowance criteria http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10012522

Shel

NatFeerick

If you are on a recognised AED (anti-epilepsy drug) or DVLA have refused or would refuse you a driving licence, you can apply for a Disabled Persons Railcard which although it costs £18 per year allows 1/3 off most rail fares for you AND AN ADULT COMPANION TRAVELLING WITH YOU.

https://www.disabledpersons-railcard.co.uk

sharon59

seaside wrote: »

my son has only sleep seizures and in the past 2 months has had 2 after 5 years seizure free he gets very tied and gets bad tummy pain do you think there is anything he might be intitled to

Its worth him trying to claim DLA again and get proper help filling it in.Stressing that its hard to predict his seizures therefore needs an eye kept on him,tiredness -needs help and motivation needs to ensure he takes tablets at right times-as hes tired may forget -really just taking what others on here have said and wording it so they cant find ways round denying it for him.
ps.see you Boxing day seaside!

[Deleted User]

NatFeerick wrote: »

Anyone else on here suffer from Epilepsy?

It is covered by the DDA and you can get help with certain things depending on the severity of the condition, but as it's one of these 'hidden' conditions it can be difficult to justify why you should get the help.

Is anyone able to help compile a list of help available or any successes people have had with getting assitance?

I'll start with Free Prescriptions if you are on continuous medication...

Yes I do,3 or 4 full blown seizures most weeks,and absences throughout each day,this has been for 10 years now following a stroke at the age of 38

If you have been refused or would be refused a driving licence because of your epilipsy then you can get free off peak bus travel,and in some areas e.g. manchester free local tram and train as well

The site linked below is an excellent scource of help and info for people with epilepsy they also have a very good free forum
http://www.epilepsynse.org.uk/

if anyone wants a chat about epilepsy feel free to message me:beer:

[Deleted User]

tonson wrote: »

Hi,
I have been receiving DLA for brain injuries I suffered in a road accident a few years ago. I applied to the Social Services for a bus pass and they told me I had to apply to my local Housing Office. They also told me that I might not get a bus pass - which I did`nt. I was told that I did not come into "that catergory" Then in March of this year, I was diagnosed with Epilepsy, which the Doctors think is related to my injuries.
Would I now be able to re-apply? And why does it have to be the Housing Office. What has it to do with them?

it has nothing to do with housing office applications should be made to your local passenger transport executive,any large bus station that has a travel office should have the relevant forms,its a failry simple process they write to your gp for confirmation that you have epilepsy,you supply photos for the pass,and if you have had a driving licence proof from the dvla that you have surrendered it