Many people end up at this blog having concerns about Epilepsy and DLA.

The underlying problem is that many people (medical professionals  included) have little or no understanding of how many different issues are encountered with epilepsy and what an impact it can have on trying to lead a ‘normal’ life. Would that it was just an occasional tonic clonic seizure, eh?

So for those with epilepsy, struggling to fill in a DLA form , and those who administer the DLA and haven’t realised how little they might know about epilepsy, here are some tips:

* Only claim if you actually need it.  DLA isn’t a reward for not being well – it is to help someone with a disability afford a life that mirrors more closely that of other people without that disability.  I have very mild epilepsy, my daughter has it very badly. If your life is pretty much the same as other peoples (like mine is) you probably aren’t eligible for DLA – but then you (I) don’t actually need it. There are plenty of people who really really do!

*The effects of epilepsy vary tremendously from person to person. Don’t think that the officials who look at the form will know what you are talking about: spell everything out. If the form doesn’t have a place for a problem, add it at the end.

* Remember that while most people know nothing about epilepsy, they carry a stereotype in their head (generally an actor acting a tonic clonic seizure  in a film or on tv). You must make sure that your application spells out the actuality as it is for you.

* ALWAYS maintain a full seizure chart  for each year, and keep them afterwards.  (I download a day by day year planner and fill it in online, with different colours and symbols for various seizures, interventions and outcomes. I note all changes of meds too. This means I can always print off a totally up-to-date one)  Use the chart to mark  not only seizures, but also the results (broken teeth, hospital admissions, episodes of status, period in intensive care). I have ten years worth now recording the appalling conditions in which my poor child has lived –  and wave them around at the slightest provocation.  I hand out updated ones at every doctors’ appointment so it appears on all the medical notes too. No-one can say that the information isn’t there!

* The DLA form doesn’t apply very accurately to Epilepsy. Spell out the effects of the epilepsy. For example:  Yes you can walk without difficulty for miles – unless you are having or recovering  from a seizure. However when you are walking you might suffer from an absence – crossing a road for example, or suffer a partial complex seizure and start behaving in a way that looks strange and might be dangerous.   Hazards are individual. Don’t forget to point them out if they exist.  Many people really won’t have any idea of the range of problems e brings with it..

* Estimate the time it takes to get over the effects of a seizure as well as the seizure – or all the different types of seizure you might have –  and the amount of looking after/out for that you require from others to try and ensure your safety.  If you’re ok in 5 mins, take two hours, or are not good for a day after a tonic clonic, make sure you point this out. If you fight to get up, but generally fall, mention it. If you have ten minute seizures at night, but this requires others to listen out for them, and  to check up on you during and for hours afterwards, make sure this is fully explained. If you can’t have a bath without an open door and someone in the house, or a shower without alerting people  to keep an ear out, or cannot go to a public toilet without making preparations for rescue if necessary, do point it out.  Many people would simply not realise this might be a problem.

*Save every piece of paperwork you are given because you can use them for supporting evidence: and my gosh, bad epilepsy gets you a lot of pieces of paper.  Prescriptions, appointments, letters from social workers/schools/ medical professionals etc , those never-ending bills for emergency dental work, discharge letters from hospital etc.

* Where they ask for names and contact details of all the professionals you have seen in connections with your epilepsy, make sure it really is all of them. We usually end up with eight or ten – and not by any means all medical. Take the time to track down accurate contact details: its worth it.When contacted, these are thye people who can tell it as it is!

* There can be awful and unexpected consequences of epilepsy . If you end up in a&e with broken bones and blackened eyes and a neck  brace because you fell;  or  in custody because your seizure was mistaken for the effects of drink or drugs; or end up lost and wandering because you have ‘missed’ some time, or even (god forbid) get attacked for looking odd, or behaving strangely, remember to photocopy the paperwork. It supports your statement -and makes people understand the range of dangers e brings with it.

* The same applies if you become aggressive or suicidal or incoherent with some meds. It is a tremendous inconvenience to put it mildly.

*Are your drugs time-sensitive? I have only recently realised this varies from person to person. Make sure you write down how many hours or days you can get away with after missing a dose/doses. I am not convinced that many people realise the RANGE of problems that can arise from missing meds.

* Similarly, if you need reminding, or pushing to  take your drugs, come clean. It adds to your proiblems

* Photocopy every page of your form  and every attachment and put it away for the future. If your claim is contested, and you think this is not reasonable,  you can then look and see if you have not been as clear as you thought

NB DLA is current until 2013/14. After this we will have to see how the new PIP support pans out. Currently I’m not believing either the “snatching the lifeblood from disabled children” brigade OR the “its safe in our hands” lot. Watch this space