PIP for Epilepsy

I’m on my second attempt at trying to get one of our tenants PIP on the basis of uncontrolled epilepsy and I’m looking for thoughts and ideas from those who may deal with this more than me - or anyone else really.

Last year we went as far as tribunal and lost and this year thought we’d try again.

As background I’d like to say that despite high levels of anti-seizure medication this claimant is having 2 or 3 clusters of seizures every month with each cluster lasting for several days in a row.  She has both petit-mal and grand-mal seizures and her epilepsy is so out of control that she is being tested for her suitability for surgery to remove the part of her brain that is causing the seizures.  Unfortunately, this last is a very slow process because the hospital which will do the surgery is in Manchester and she lives near Edinburgh.  The hospital insist that whenever she has to go to them she needs to be accompanied by 2 people.

We’ve just received a negative Mandy decision although she has been awarded 6 daily living points which is more than we ended up with the last time.  I’m keen to get her the other 2 points she needs, and maybe something for mobility but I think I maybe need some pointers.

One of the things I changed from last year is that she describes some of her seizures as ‘funny turns’ or her ‘being stupid’ and I made sure I referred to these as petit-mal and grand-mal seizures because that’s actually what they are.

What more can I be looking at?

Mairi

Having now had personal experience of living with two people with forms of epilepsy, I am moving away from using “grand mal” and “petit mal”, which I do not think are used by the medical profession here much now. There are many types of seizure activity and I think it is probably best to visit http://www.epilepsy.org.uk or similar for information about how they present. Armed with that, it may be easier to understand exactly what a person experiences, and to get an idea of the effect on their functionality. From there, it is a case of seeing what PIP descriptors may apply. As a random example, one of my daughters had a form of epilepsy which caused tonic-clonic seizures lasting about 2/3 minutes with little post seizure confusion. Their timing was broadly predictable in that they would happen when she was falling asleep or waking up, but only every few months. If I were to look at them from a PIP point of view, they would not present the same risk as a more frequent partial focal seizure (which I have also experienced), due to the greater frequency and more unpredictable onset, though did not present as dramatically as the tonic-clonic seizures.

The effects of anti epileptic medication should not be ignored either - I have seen quite a few people where a degree of control of seizure activity has been at the cost of very significant side effects - e.g cognitive impairment. Again different people react differently, but it is worth keeping in mind.