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Epilepsy and PIP - practical experience
I am preparing some written information about benefits for people with epilepsy, and I was interested whether anyone here has experience about the level of PIP being commonly awarded? Advisers locally have seen very few PIP awards so far (across all disabilities). It’s astounding that despite PIP being introduced from June 2013 the number of claims decided is still so low, and so we have almost no real evidence of the level of award to expect.
My specific concern is the absence of an overall notion of ‘continual supervision’ within the Daily Living component. In January 2012 the DWP published explanatory guidance about how they expected the PIP descriptors would applied in a variety of cases - “Personal Independence Payment: assessment thresholds and consultation” https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/181178/pip-assessment-thresholds-and-consultation.pdf
This included a number of illustrative case studies. Pete with epilepsy is case study 4 on page 19.
Young man, living with his family, has “fits most days, sometimes more than once a day ... treatment under constant review to try to reduce his fit frequency”.
DWP suggest he would only get 6 points, so no Daily Living (”Although .. fits unpredictable with minimal warning, he is independent in all daily living activities other than cooking and bathing, where having a seizure would result in significant risk. He therefore requires supervision for these activities”). ie, it’s accepted he requires some supervision but not enough to reach Daily Living threshold.
However, he does surprisingly qualify for enhanced Mobility component.
Anyone had any actual real-life cases like this so far?
Yes - one and it was almost exactly like the example. Client was awarded enhanced mobility and no daily living. He scored 7 points on daily living. Went through mandatory recon with a helpful letter from the OT. Decision not changed, appeal now submitted and sent to DWP to prepare a response.
However - the client has recently had three days of tests as an inpatient and has been told he doesn’t have epilepsy at all. He is now being weaned off the anti convulsants he has been taking for 20 years and waiting to see the neurologist and a psychologist.
No direct practical experience I’m afraid Alban, but I have to say that, on the issue of Pete and case study 4, this is often one of the most controversial when we hold PIP training courses and trainees are asked to score the relevant points for this case study.
Common lines of argument are that there should be additional points scored in similar situations under descriptor 3(b)(ii) as Pete needs supervision to be able to monitor a health condition (1 point), and descriptor 5(c) as he needs supervision to be able to manage toilet needs (2 points). This would get him to 8 or 9 points potentially.
The former could apply due to the acknowledged uncontrolled nature of his epilepsy, thus demonstrating that the requirement for continual supervision to try and ensure his own safety is clearly made (and indeed recognised by the fact that DWP accept he cannot shower without similar levels of supervision for example). They also state he has injured himself in the past.
On the latter, we have a situation whereby it is strongly arguable that Pete satisfies descriptor 5(c) most of the time, in that he requires supervision to be able to manage toilet needs i.e. to watch and check for incontinence when a fit occurs, and on the occasions when he is incontinent and needs to sleep afterwards, he would require attention to help him change from his soiled clothing (descriptor 5(e)). Under reg.7, as 5(c) occurs over 50% of the time, this should be the descriptor that applies to Pete.
Hmm, interesting. thanks
So does 7 points on daily living include an extra 1 for ‘supervision, prompting or assistance to manage medication or monitoring a health condition’—plus the existing 6 for supervision during bathing (2) and preparing food (4)?
so near and yet ...
What extra descriptors might you ask for at an appeal hearing? managing incontinence (if it happens at least every other day - over 50% of time) ?
I understand the concern that the diagnosis is no longer epilepsy, but I take it that the frequency of the fits/episodes/whatever-they-are is not in dispute?
If the fits are unpredictable enough that he has suffered burns and scalds in the past, it is not clear how supervision would help other than to mitigate the injury. It might be arguable that 8 points apply for cooking as any cooking done is not safe.
If the fits are unpredictable enough that he has suffered burns and scalds in the past, it is not clear how supervision would help other than to mitigate the injury. It might be arguable that 8 points apply for cooking as any cooking done is not safe.
Indeed.
And that would be my approach with a number of the activities;
2. Taking nutrition - DWP accept that his fits are so unpredictable (and presumably so lacking in any warning) that he requires supervision when walking because of the risk of injury and danger from traffic. What, then, if he fits whilst eating? Is there not a risk of choking? Supervision cannot, of course, eliminate such a risk, but it can ensure the necessary medical treatment is given. Arguable that 2(b)(ii) is met - 2 points.
5. Toilet needs - already been referred to but to tease out the detail…..it’s not, by itself, going to be the fact that he is sometimes incontinent after a fit that results in the need, but the fact that he falls asleep after a grand mal fit. At a minimum this is going to require that someone checks his clothing to see whether he has soiled himself and actual cleaning if he has, so assuming grand mal fits on the majority of days, that’s assistance to manage toilet needs - 4 points.
Add to those already in the bag and you’re there.
not done a PIP one and am unlikely to, but I recall the struggles getting DLA for someone with uncontrolled grand mal epilepsy and can’t see this being any easier; one of those things that people don’t “get” unless they already know someone with the condition and thus “get” the issues
Not done a PIP one yet but have one approaching so will be taking a keen interest in this. The DWP case examples were looked at in preparation for PIP at a couple of GMWRAG meetings and it was very much felt that epilepsy was one of the examples where there was a logic to the DLA decision which could no longer be applied when it came to PIP. A typical DLA award would be mid to high care and low mob. A typical PIP award would be high mob and potentially nothing on daily living.
Some interesting points made by a couple of posters on this thread who have now given me much food for thought.
[ Edited: 15 Oct 2014 at 09:50 am by Mike Hughes ]Client with epilepsy, depression, fibromyalgia.
Awarded 6 points. Appealed, award adjusted to 7 points. Statement on Decision Notice “points awarded to reflect severity of conditions.”
(No points for dressing/undressing as observed getting out of the back of a car by HCP)
Enhanced mobility awarded.
Client with epilepsy, depression, fibromyalgia.
(No points for dressing/undressing as observed getting out of the back of a car by HCP).
and getting out of the back of a car is relevant to dressing/undressing how, did anyone explain?
Well- clearly the HCP oberved them arriving at the venue already dressed (as opposed to hastily being donned with appropriate apparel by carer before leaving car in birthday suit). Wake up at the back.
Yes, asked on mandatory recon for points for assistance using the toilet - they took 4 months to come back with “we haven’t changed our decision because he was observed walking therefore he can do anything we say he can and we stuck our fingers in our ears/eyes and went la la la when we got to the bit about help using the toilet”.
Or words to that effect. And yes, there is no doubt that he does genuinely have some sort of seizures but some of our judges and medical members would love an opportunity to suggest he’s been putting it on. For 20+ years.
I need a holiday.
My colleague had these comments on a PIP assessment -
“The fact that Mr B was capable of standing for 10 minutes (leant against a wall or otherwise) would seem to support the conclusion that he can walk in excess of 50 metres”
“he had reduced grip in his left hand however he was holding a cigarette… this would suggest he would be able to use aids such as a grab rail or a long handled shoe horn or grabber”
“He was observed holding a cigarette in his left hand which would suggest he could hold a knife and fork”
“although he used a walking stick he was quite stable on his feet”
off the thread of epilepsy but just general deductions made by the HCP
Thanks for the advice here. Just done a PIP for a client with seizures and blackouts.
Very helpful
We shall see…...
One of the first PIP claims I assisted with involved somebody with a severe form of very poorly controlled epilepsy (clusters of seizures on average every 2 days with long postictal state). Client was visited at home by an epilepsy specialist nurse (atos) and awarded enhanced rate of both components soon after (DL - 30 pts, Mob - 12 pts)
There was a fair amount evidence in the form of care plans (client has LA funded home care), letters from consultants/epilepsy nurses and a short seizure diary to support.
Client was awarded points for supervision in some places (cooking, managing treatment) and prompting in others (preparing food). They were also awarded substantial points under communicating, reading, engaging with others and budgeting decisions.
As well as focusing on the frequency/severity of seizures in the PIP2, I made sure to detail the postictal state making specific references in all applicable questions as to how long the postictal state was lasting and how/why activities were precluded during this period.
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and getting out of the back of a car is relevant to dressing/undressing how, did anyone explain?[/quote]
We did challenge it; client said had difficulties bending down to dress. We stated this observation was irrelevant and wasn’t done repeatedly. The case could have got more points but I’m not a rep so had to sit back and bite tongue a lot. Decision notice also added “Particular emphasis was placed on evidence provided by HCP.”