PIP HELL! HELP!

Thanks for the warning Gordon. Basically husband is arguing that he cannot prepare and cook meals to the extent necessary for proper nutrition due to 1. his breathing difficulties which cause tiredness, poor appetite and lack of motivation 2 . his epilepsy because the risk of of a seizure is ever present - the low frequency of his seizures definitely does not make it safe to do something. He would only have to have one seizure while cooking to suffer serious scalds or even cause a fire. It simply isn't safe because a seizure could strike randomly at any time in the same way it is NEVER safe for him to drive, or take a bath while alone in the house. 3. the cumulative psychological effect of having many seizures over the years in which he has suffered minor and more serious injuries including burns and scalds. In his perception, he can never know in advance that he will not have a seizure and harm himself, so the fear of having one is enough for him to avoid potentially dangerous activities. He also feels he must reduce anxiety as much as he can because of his high blood pressure and because there is thought to be a link between seizure frequency and anxiety.

I couldn't agree more that the effects of epilepsy are poorly understood by assessors, including the psychological effects. My son especially is terrified of having a seizure whilst outside, or in social situations but is too embarrassed to even discuss his fear with his doctor. He was turned down for ESA a year ago because he felt to embarrassed and intimidated by the assessment process to carry his claim forward, and I'm getting worried he won't go for his PIP assessment.....he's already missed three appointments, two due to seizures and another due to anxiety. Sorry to ramble but I really feel like tearing my hair out in frustration sometimes!

But yes, husband will be seeing doc this week sometime, and I would hope the doc will give him a letter explaining the risk of a seizure is on going and therefore relevant to determining the safety of an activity, and also the psychological effect of having a history of uncontrolled, random attacks. At the same time, he doesn't wanna to emphasize the epilepsy issue to the extent of neglecting the problems caused by his COPD, which are just as relevant, maybe more so.

Husband and myself feel very strongly that its important in principle to establish the point about the ever present risk of injury posed by uncontrolled, random seizures.....I am sure many people with epilepsy are not getting the help they need because the point is not made convincingly enough. He is willing to take this point about safety to the upper tribunal, if necessary, so wants to make sure he has the argument well prepared.

Again, sorry for rambling a bit as I know you have a lot of other people needing your help.

Have been thinking again about the 51 percent ' most day's rule and it seems obvious to me that it is discriminatory against people with a fluctuating, unpredictable, condition which means they need supervision at all times.

Taking bathing as an example, a person who has unpredictable seizures four days a week would qualify as needing supervision while taking a bath due to the risk of drowning, yet another person who only had three unpredictable seizures would not because they would be regarded as safe on most days. However, the reality is that due to the unpredictability factor, it is impossible to determine on which days a seizure will strike, and therefore the frequency of the seizures isn't relevant. Due to the unpredictability of the seizures, supervision is needed EVERY time the person takes a bath, whether they have unpredictable seizures four or three days per week.

Similarly, a person who has unpredictable seizures four days per week would qualify under the supervision criterion while eating due to the risk of inhalation of food or drink, but a person who has only three seizures per week would not. Yet in practical terms, both need supervision every time they eat due to the risk of choking if a random seizure strikes.

I just want to be sure I have understood this correctly especially because my son who has unpredictable seizures on up to three days per week, and sometimes more than one per day), has been hospitalized twice due to suspected inhalation of food. This is potentially life threatening as it can lead to pneumonia.
My son was awarded points for his supervision needs for various activities, but only because of anxiety over having an unpredictable seizure, not because of the risk in itself.

That a person with unpredictable seizures on only 3 days per week has to rely on showing anxiety connected with activities like taking a bath seems absurd because a person having unpredictable seizures on 3 days per week needs supervision EVERY TIME they, for example, take a bath, just as much as a person who has unpredictable seizures on 4 days per week.

I am sure many people with epilepsy fall foul of the 51 percent rule if they don't rely on anxiety to make their case, and imo, this is actually discriminatory and therefore illegal.

My question, I suppose, is how does equality legislation affect the decision making of appeal tribunals? Is raising the issue of a possibly discriminatory rule allowable at an appeal tribunal allowable and how do tribunals deal with such a challenge to the legality of a rule? Are they allowed to set aside a rule if they agree it is discriminatory, or can this only be decided by a court?

Hi CeeCee,

The PIP descriptors and regulations are laid down in law, DWP and the Tribunal Service can only work within this, they cannot ignore the law for any reason.

I don't know whether a Judicial Review would look at this kind of thing but it is certainly not the kind of thing that the 'man in the street' is usually able to undertake!

I thought that would be the case regarding a tribunals power's. But the rule is still discriminatory and there has to be some way to challenge it. A person with unpredictable seizures on 3 days per week (or two days or one day) has EXACTLY the same need for supervision as a person who has unpredictable seizures four days per week.

The rule is wrong and unjust in principle. As a carer for both my son and husband, I am so angry because my own life has been very restricted because of the care they need from me. With the change to PIP I lost my carers allowance.