DLA Appeal

minigirl762003

Unfortunatly 'telling it as it is, in full ' does not always get the correct result. As stated in my previous post according to the DLA people my husband is at NO risk of having a fit yet he has uncontrolled epilepsy which means he can have a fit at any time!!

scooter_gal

minigirl762003 wrote: »

Scooter_gal - We are waiting for our tribunal date and are seeing CAB tomo about my husbands claim. He also has uncontrolled epilepsy and when they turned him down (after he had been recieving DLA for 5 years) they stated he had no chance of having a fit!! Im sure they are all idoits there!!!

Hi minigirl - The trouble with Epilepsy it's not really that known as a disability. I'm a member of epilepsy action and have read alot on that site which has helped me alot with understanding epilepsy etc. My hubby has had it since he was 18 he is 43 now but only became uncontrollable 6 months before we met over 3 years ago. In this time he has a OT (occupational therapist) and is now under 3 neurologists. He is actually going into hospital in a few weeks time for 3 days under 24/7 surveilance with the electrodes on his head. He's had the latter done before which showed up nothing but not had the 3 day stay. We are hoping that they can pin point where the seizures are coming from so it can be treated correctly. He is on maximum dose of 2 lots of tablets.

When you go to your appeal make sure you take everything with you from OT reports to neurologists letters/appointments, if possible copy them and post them to DLA if you've not already done so.

When we were in the appeal the DLA doctor whom was independant, a lady who was from DLA (very mean and wouldn't allow me to speak until spoken to) and a blind man. None of them took note until we showed them death certs of 2 of my hubbys cousins that had died of SUDEP (sudden unexpected death in epilepsy). It runs through his side of the family and their was 5 of them with epilepsy. My hubby is the worst one for seizures!

Just happens my hubby had had several seizures during the night when he - I and Debbie from DIAL attended his tribunal and I hated the way they were battering him with questions, he was so confused, when he has a seizure he sleeps for a good 10 hours afterwards as he is so drained and not alert.

DIAL - Disability Advice Network - They also run workshops for disabled people and also offer advice and help out filling forms out and also attend appeals with you.

If you are not good at filling forms out I strongly reccommend them as they are trained and go on training courses to do such things to help those who are disabled and can't form fill for themselfs due to their illnesses!!

I'm keeping my fingers crossed that Epilepsy becomes more known in the public eye, I wish they would show it on tv more to make people realise that someone could actually be having a seizure and not actually on the floor because they think they are drunk!

Sorry if I have gone off topic a little here.

scooter_gal

minigirl762003 wrote: »

Unfortunatly 'telling it as it is, in full ' does not always get the correct result. As stated in my previous post according to the DLA people my husband is at NO risk of having a fit yet he has uncontrolled epilepsy which means he can have a fit at any time!!

I agree!!

minigirl762003

Scooter_gal I know where you are coming from. We have just had a big row with the boss where my hubby works as he wanted to shut my hubby in a warehouse by himself with no way for my hubby to get out unless someone let him out. When we mentioned hubby's epilepsy he said that he would get someone to check on him every 30 mins. Needless to say we weren't very happy with this reply.

People definatly need better education on Epilepsy and what it entails, especially side effects (depression etc). And it is a hidden disability as hubby seems fine on the outside until he has a fit.

Blakespops

cyclonebri1 wrote: »

You do not need to go to CAB or DIAL, (whatever that is).

Just tell it as it is, in full. You will get the correct result.

The comment about DLA doctors knowing nothing about epilepsy is to be honest naive.

Telling things as they are is what we should all do yes I agree, the problem comes when the decision maker looks at the medical reports, their own EMP report and decideds they know best and say your not as in need as everyone is telling them you are.

minigirl762003

Just a quick question. Everyone seems to mention that they have had an assessment from a DLA doctor. Does every case have this as my hubby has never been seen by a DLA doctor.

scooter_gal

I will just add that our own Doctor and the Doctor before we moved a year ago have both admitted to us that they know very little about Epilepsy, they know the basics but not the in's and out's as the Neuro doctors! And as the doctor at the appeal is independant (meaning he is a normal GP) he was also unaware of the in's and out's!!

I admire your hubby still working minigirl with his epilepsy, my partner had to give up as he was working on construction sites as a steel fixer (gp said he shouldnt even be on the site even when his seizures were stable) but its all the work he has been doing since he was 16. He has lost everything since they became uncontrolled ie: his house etc etc

I always try and fill the forms out and always tell it as it is, I always take them to DIAL for them to look over and to add their own bits as they know of my partners condition and how it effects him.

scooter_gal

minigirl762003 wrote: »

Just a quick question. Everyone seems to mention that they have had an assessment from a DLA doctor. Does every case have this as my hubby has never been seen by a DLA doctor.

My partner has never been called for one either which I thought he would this time round. It might be because he is under doctors at the hospital and they get updated through them.

joyciebird

Blakespops wrote: »

Telling things as they are is what we should all do yes I agree, the problem comes when the decision maker looks at the medical reports, their own EMP report and decideds they know best and say your not as in need as everyone is telling them you are.

Decision makers make decisions based on evidence and input from Medical Services. We do not imply we know best, but from experience a lot of people presume that because they have an illness they automatically believe they have an entitlement to benefit.

Lady_K

joyciebird wrote: »

Decision makers make decisions based on evidence and input from Medical Services. We do not imply we know best, but from experience a lot of people presume that because they have an illness they automatically believe they have an entitlement to benefit.

If you are a decision maker yourself you might stick to the rules and do it right but there are always good and bad ones as the same with everything, good and bad doctors, good and bad teachers, good and bad policemen etc. You cannot just say that because you might do your job right that others do too. There are a lot of people that come on here and tell us thier experiences with medicals and claims that go from completely refused to full rate care and full rate mobility in some cases, sometimes its incorrect info, not enough info and sometimes it has been the doctors putting things completely untrue down on the forms and sometimes the decision makers get it wrong. I don't think its fair that you should come on and say that you think all decision makers are doing it as it should be done and that its people thinking they are entitled when they arent.