I had a PIP appeal today. I’ve been waiting for it for ten months. I don’t think it went well.
There are some points in my favour:
- the panel repeatedly referred to the fact that I have learnt to manage my condition through careful planning and pacing, and that I can’t manage more than I currently do
- when queried on how I could manage to sit in the tribunal room, I said that it was only with exacerbation of symptoms: nausea, flu-like symptoms, poor temperature control, brain struggling to convert blocks of colour into a coherent image
- I did say that I’d been on a 3-week inpatient rehab course which included looking at aids to help with cooking, and hadn’t come away with recommendations for any.
There are also points of concern:
- I felt that two of the panel didn’t like me, and the friend who took me to the appeal felt the same
- my friend felt that the panel were looking for ways to not spend money
- the clerk before I went in said as part of his general spiel that the onus was on me to give a full account (in fact, Judge Hale has ruled that the onus is on the tribunal panel to ask the right questions to illicit the appropriate and complete information, because it is the panel not the individual who know what information is relevant and necessary)
- a long time was spent discussing precisely how I get from standing in a bath/shower cubicle/wet room to sitting on the floor. Frankly, I’ve never thought about it. I’ve only just thought that the reason I prefer sitting on the floor to sitting on a bath stool is that the floor is more stable and therefore I’m less likely to lose my balance, as well as being closer to the ground so any injury if I toppled over would be reduced
- the panel seemed confused as to why a perching stool wouldn’t help me with cooking, even though the relevant problem for me is Postural Tachycardia, which in fact would be worse when semi-stood because of the reduced muscle action in the legs and lower back. Sadly I’ve only just thought of this additional explanation beyond the basic one that being upright makes me ill
- I think at one point that one of the panel members commented on my having a rehearsed answer. Actually, I went into it having not prepared, because I’ve given up preparing beyond the initial appeal letter. It’s just not worth the effort. But I’m very worried about that comment. It is usually used to mean that they think someone is so deliberately lying that they’ve carefully prepared and memorised the words they need to say to get a false award
- The questions asked don’t seem to make it easy to give the relevant information. I think it’s the failure to ask ‘how would you feel in the moment of doing that activity?’, ‘how would you feel the next day?’ or – crucially – ‘how would it make you feel to do this activity twice a day/every day/every other day?’
- When discussing cooking, the suggested meal was a baked potato with cheese and salad. I’m worried that that’s an overly basic meal to use as the test for PIP. There is no lifting of saucepans or kettles. No stirring of ingredients as they cook on a hob. No chopping of potato, meat or vegetables. Very little time involved at all. In fact, only one item in the whole meal is cooked – the potato – and there is no meat or legumes. I don’t think that cheese should be considered a satisfactory protein element in the test of preparing a main meal.
I said I would have to use ready-grated cheese and packet salad. I don’t think the panel – at least the two who gave off the impression of not liking me – believed that it could be possible for me to struggle to grate cheese when I do needle-felting as a hobby. I replied that needle-felting is very light-weight and that I am slow in my movements, whilst grating cheese requires grip and pressure. The panel suggested that suitable graters and aids could make it possible but I’m not sure how. Cheese won’t grate without pressure. I can’t chop the salad either.
The panel did discuss whether I could cook if I did it in stages. I’m not sure what the point of that question was. Cooking done in stages is cooking that takes so long that it shouldn’t meet the ‘timeliness’ criteria.
- I’m not sure if I managed to get across that my once-weekly-only shower is more than merely my personal choice. I did say that I’ve learnt that if the thought of something makes me want to cry then it’s too much, and that I shower on Sundays because I don’t work on Sundays so that means I have some extra capacity. This was referred back to my overall use of pacing, but I was left with the feeling that they were at least considering arguing that my reduced showering and cooking were merely personal choices, not necessities.
- I forgot a crucial issue: that the DWP doesn’t have the right to reduce my previous PIP award without clearly explaining how I have ijmproved since then. THe DWP didn’t do that, but I forgot to raise it with the panel. I’m not confident that they’re aware of it, as I think the tenor of their questions would have been different if they had
- I said at the start that I was okay with the standard mobility rate. But now that I’m worried I’ve failed to explain my needs on the daily living component, I’m wondering if I should have pushed for enhanced mobility after all, based on timeliness (I walk less than half normal speed). But personally I don’t think that enhanced mobility would, given my reasons for needing it, be consistent with zero daily living.
- I worry that my own personal knowledge of how PIP works and my understanding of the points system as well as wider benefits issues will have set their backs up. yet at the same time, I can’t assume that asssessors or panel members will understand how my issues apply to the different descriptors. So I can’t win. If I’m too knowledgeable, I’m over-prepared and faking; if I trust to the assessors, I’m at risk that they like many do not understand how chronic illness or specifically the ME/EDS/PoTS #nightingale type illnesses impact on functional ability.
My UC is still wrong, so I need to contact them again, and have just done so according to their steps of what to do: 1) tell them it’s wrong (have done so, several times, on phone and on UC journal); 2) ask for a written explanation; 3) if I think something has been overlooked, then ask for MR. So I guess, given it’s not been fixed, that merely asking them to correct it isn’t enough. I have to actually ask for a written explanation so that I can then ask them to reconsider. I hope that the written explanation will come in a form that makes it obvious how to ask for a reconsideration. I’m a bit confused as to why it’s something worthy of the whole appeal process anyway. It’s not a benefit assessment of eligibility. It’s just them getting their maths wrong and not getting their computers to talk to one another.
Anyway, I’m tired, I can’t see properly, I feel sick from nerves not just fatigue, and I want to cry. Part of me wanted to go over to my church to have a cry and a chat with whoever was in but I think I should at least wait for the PIP appeal decision. Contrary to previous experience, the decision is being posted to me rather than given the same day. So I have to wait, frustrated and unsure.
Update: I’ve been refused. I still have the standard rate mobility component, but didn’t get a daily living component as I was appealing for. I’ve asked for a statement of reasons and then may seek legal advice on whether there is a case to take to the Upper Tier Tribunal or not.
My existing award date is to 4th January 2020. Because the DWP reassesses people a year before their award is due to run out, I can expect to get a letter recalling me for assessment in less than eight weeks time. Even if I am able to make an appeal to the UTT, it’s very unlikely to happen fast enough for me to get a new award, with a new end date, superseding my current one.