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PIP HELL! HELP!

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7 years 3 months ago #176864 by CeeCee
PIP HELL! HELP! was created by CeeCee
Hi All,

My partner aged 60 has had grand mal epilepsy since adolescence and was awarded DLA middle rate care and lower rate mobility for life about 20 years ago. I was also getting Carers Allowance for him all that time. On the changeover to PIP, he was awarded no points for either care or mobility in respect of the epilepsy. However he was awarded the standard rate of mobility due to emphysema as he cannot walk more than 50 yards without stopping for breath. He scored only 4 points for the daily living activities (needs an aid to be able to prepare and cook a meal, and an aid to get in and out bath) No points were awarded in respect of the epilepsy. It's as if the DWP wants to ignore the epilepsy altogether.

We were very shocked by this as before the changeover to PIP his DLA was awarded entirely on the basis of the epilepsy (he didn't tell DWP about his emphysema to avoid changing to PIP as long as possible). Another blow was the loss of my Carers Allowance due to him losing the care component. It's quite devastating to lose so much of our income in one fell swoop like this, particularly as our mortgage was approved on the basis of the lifetime award of DLA . We are panicking about paying the mortgage, and fear ending up homeless. It's also so frustrating and unjust, because although my partners epilepsy has taken the same pattern over the years, his overall health is much worse since he developed emphysema.

Many years ago my partner tried various medications, none of which helped his seizures, and all of which had unacceptable cognitive/psychological effects. He decided not to take medications, and instead adopted a life style which minimized the risk of injury from seizures as much as possible, for instance, not bathing or cooking without supervision, or handling sharp knives. He also avoids going out alone on most non local journeys, and travelling alone on public transport. He has still incurred many minor injuries over the years, and some more serious ones needing a trip to A and E, and has narrowly avoided being run over by traffic on two occasions.

The DWP claims that as he has only about 14 seizures per year, he is safe most of the time. However because his seizure are completely unpredictable and without warning the risk of injury is always there. He has never applied for a driving licence because that is obviously very dangerous considering the unpredictability of his seizures, yet the DWP considers busy roads are not dangerous places for someone with unpredictable seizures to be near while outside alone. They do not accept that he is too anxious about having a seizure to go out unaccompanied either, even near heavy traffic or on public transport. They seem to have no understanding or empathy at all!

The DWP is also making an issue about my partner's choice not to take medication under the care of a specialist. He feels he will be forced to try more medications by the DWP, even though none have worked before, in order for DWP to take his condition seriously.

All this stress isn't doing us much good either, and we are waiting for a date for an appeal. He is dreading it. Any thoughts/comments/advice more than appreciated!

"Epilepsy is a condition that poses unique challenges to those living with it and should be considered a special case..... For most, seizures are unpredictable, a constant fear of what might happen and when.” EPILEPSY SOCIETY UK.

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7 years 3 months ago #176879 by Gordon
Replied by Gordon on topic PIP HELL! HELP!
CC

Welcome to the forum.

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Your primary issue is how DLA and PIP deal with Epilepsy. Under DLA there was a general requirement for care, so someone with epilepsy but no specific care needs could still receive a care award, PIP has no equivalent to this and therefore epilepsy claimants must show a need for supervision when carrying out activities such as Preparing and Cooking a Meal or Washing and Bathing, if they do not have specific problems with the PIP activities.

DLA and PIP also look at the risk of an attack in different ways, although this should in principle favour PIP claimants as it looks at the majority of days rather than the majority of the time. However, if your partner only suffers actual attacks a dozen or so times a year then this will be very difficult.

Are their attacks random or are there predictable circumstances that will lead to an attack?

You need to find some way of showing that the risk of an attack is something that needs to be considered on the majority of days.

The issue of medication is a difficult one, the DWP, based on previous Case Law, can make assumptions about how medication might reduce the effects that a condition has on a claimant, but they cannot be prescriptive, in other words they cannot make your partner take those medications. If there are reasons why they cannot take medication then this needs to be explained to the DWP.

You don't mention problems with the PIP activities which are not epilepsy related, does this mean that they have no over problems?

Gordon

Nothing on this board constitutes legal advice - always consult a professional about specific problems
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7 years 3 months ago #176897 by CeeCee
Replied by CeeCee on topic PIP HELL! HELP!
Hi Gordon,
Really appreciate your questions/thoughts as I struggle to prepare for upcoming appeal. It's very scary, and there's a lot at stake. YIKES!

Partners seizures are random, with no discernible pattern e.g. one month he can have no seizures at all, the next month 1 seizure, and then the next 3, and so on. Or no seizures for months, then three or four the next month. There is no way of knowing in advance that he will not have a seizure the NEXT time he lifts a pot of boiling liquid, holds a sharp knife, or is waiting alone at a bus stop on a busy road, for example.

If the risk of harm from having an unpredictable seizure while unaccompanied near heavy traffic was considered acceptable, why is it not an acceptable risk for him to drive? I would say that in both cases the risk of having a seizure is always present, and the consequences of one striking could be obviously severe. So while it might not be likely he would have a seizure most days, there are still a dozen or so days when a seizure will strike out of the blue. If he was driving on those days, he could be severely injured, or worse. As there is no way of knowing what days a seizure will strike, it is never safe for him to drive due to the severe probable consequences IF a seizure struck. The risk of harm is unacceptably high.

He doesn't want to take any more meds because they never reduced his seizures in the past and made him feel spaced out all the time. Also, our son who also has epilepsy and who DOES take meds has about 3 seizures per week and has had a few very bad reactions to the many meds he has tried, like cognitive slowing and even a psychotic episode. Many of them have alarming side effects.

Partner does have problems socializing with people he doesn't know, but this is due to anxiety about having a seizure. Also his breathing difficulties due to emphysema affect his energy levels and motivation so he tends to eat poorly and skip meals. The fatigue and poor appetite also affects his motivation to make proper meals, epilepsy aside.

Actually, he is mostly too tired and unmotivated to cook anything, certainly never three or two proper meals per day

Sorry for length of above!

"Epilepsy is a condition that poses unique challenges to those living with it and should be considered a special case..... For most, seizures are unpredictable, a constant fear of what might happen and when.” EPILEPSY SOCIETY UK.

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7 years 3 months ago #176924 by slugsta
Replied by slugsta on topic PIP HELL! HELP!
Hi CeeCee,

Whilst I understand your argument, don't get side-tracked by the driving issue, it is not directly relevant to the matter in hand.

DLA could be awarded because someone needed general supervision, but that is not the case with PIP, nor does it have 'exceptional circumstances' clauses like ESA.

As the COPD causes many limitations, do you feel you have made enough of these?

Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: CeeCee

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7 years 3 months ago #176940 by CeeCee
Replied by CeeCee on topic PIP HELL! HELP!
Hi there Mrs Hurtyback,

With regard to the COPD, my partner is very tired most of the time and certainly cannot manage to prepare and cook 3 meals per day. His appetite is also very poor and I think he would live on cereal and toast if I didn' prepare his meals and cajole him to eat them. Even then he only eats small portions and skips at least one meal most days. His poor appetite also obviously affects his motivation to actually prepare and cook three square meals per day. In sum, I think he could score 8 points due to a lack of motivation to prepare/cook meals caused by tiredness and poor appetite, and another 4 points because he needs prompting from to eat much at all. The lack of appetite and tiredness is consistent with his stage of COPD, and hopefully his doctor will supply a letter stating this. It's possible his COPD also affects the quality of his sleep because he never feels refreshed and is always tired no matter how long he sleeps.

IRO the COPD the DWP have already awarded him 2 points for needing an aid or appliance to be able to wash or bathe, so I guess we really have to successfully argue that he has problems preparing/ cooking food and taking nutrition.

Regarding the seizure risk, I take your point about not getting side tracked because it does seem we don't need to rely on it due to partner having COPD. However, I 've been thinking about what Gordon said above, namely "you need to find some way of showing that the risk of an attack is something that needs to be considered on the majority of days" and it seems to me that the psychological effect of having had many injuries over the years due to unpredictable seizures cannot be disregarded because the fear of injury if he had a seizure while e.g. carrying boiling liquids, standing over a hot stove, and so on, is enough for him to avoid doing it. Similarly, although he only has about a dozen seizures a year, he would never take a bath while alone in the house due to fear of drowning if a seizure struck (in fact he has needed rescued on two occasions in the past due to having a seizure in the bath). Imo it's not relevant whether this fear is rational or irrational because the fear of drowning if a seizure struck is always present and prevents him from taking a bath if alone in the house.

Again, while we probably don't need to rely on his epilepsy to score points for the daily living activities, the fear of having a seizure while out and about outside might score at least four points. He already has 8 points for mobility due to COPD, so needs an extra 4 points to get the enhanced rate.

"Epilepsy is a condition that poses unique challenges to those living with it and should be considered a special case..... For most, seizures are unpredictable, a constant fear of what might happen and when.” EPILEPSY SOCIETY UK.

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7 years 3 months ago #176942 by CeeCee
Replied by CeeCee on topic PIP HELL! HELP!
A quick postscript to the above : Forgot to mention that my son who also has epilepsy and has about six seizures per month was awarded the standard rate for daily living. Since he doesn't have seizures most days per the 50 percent rule, it seems the DWP must've taken into account his anxiety about having a seizure while doing these activities. Strangely enough he was awarded null points for mobility, even although he is equally anxious about going out unaccompanied.

"Epilepsy is a condition that poses unique challenges to those living with it and should be considered a special case..... For most, seizures are unpredictable, a constant fear of what might happen and when.” EPILEPSY SOCIETY UK.

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