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PIP: Referencing specific numbers with evidence?

8 months 5 hours ago #265228 by T
Thanks R, sounds like you're also a POTS sufferer? I had always intended to pad it out a lot more, I just didn't want to write an essay for my question. But I really appreciate your point about the very sudden rise and then the resting. I'm textbook that as soon as I lie down my heart rate will come down and the acute orthostatic symptoms will go. But if it's a bad day they come back the second I try and do it again so similar to you I can 'recover' quickly but the task itself is hellish and it's not like you can always lie down when you're outside on a journey. I think reliably is going to become my middle name after doing the form!

Do you mind sharing a bit more info about what you scored on your mobility activities? This is where I'm really struggling. I do not undertake unfamiliar journeys on my own because public transport, particularly during peak times is a disaster of standing and waiting around but it's not because I can't find my way and it's not a mental problem or even the walking it's the standing up and waiting that is the killer. My walking ability is so so variable but I think I need to properly diarise it as today I can barely get to the kitchen so I'm less than 10m but in my head I'm much more independent than I really am. I can walk to the shops, but of course I only do that on days where I feel capable so I don't see the effects of doing it when I feel terrible.

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7 months 4 weeks ago #265264 by LL26
Hi T,
Just to pick up on something in your last post. Don't worry if occasionally you can do more on a better day. The important thing is the 'majority pattern' ie what you can do on the majority of days, Thus, even if once in a while you can get to the shop, that's great, but unless it happens 4 days out of 7 and can be done repeatedly, safely in an acceptable manner and in a reasonable time etc then this can be ignored.
If you can only walk 10m (or may be safely less) then it is very unlikely you will be able to access public transport, unless your house opens immediately onto the train and the bus stop is right outside. The train will be the same. Moreover, it doesn't sound safe - even if you managed to get to the bus, you would still have to walk down it, and what if you had a POTS attack whilst on the bus? Do you drive? Perhaps not if it would be unsafe? That must mean that you can not (safely!) make journeys on foot. (Remember a PIP journey can be a few metres or several 100 miles.) On that basis, and if you can not drive, you would need someone with you to ensure you are safe. Have a look therefore at Mobility 1f 'can not follow the route of a familiar journey without another person...'
As for physical mobility under Descriptor 2 - if you can't (safely etc) move more than 10 m you would fall under 2e 1 to 20m.
Either 1f or 2e provide 12 points so should equate to Enhanced Mobility.
Because POTS isn't very common, examples about filling out PIP forms probably don't relate to this. However, if you think of other illness that cause blackouts, such as epilepsy, reading examples relating to that much give you a better idea of how to proceed.
I hope this helps.

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7 months 3 weeks ago #265309 by R_
Hi T, I'm not diagnosed with POTS but my investigations were so many years ago it was more a case of ruling out a serious heart problem and epilepsy causing me to pass out, which they did and they then discovered that my heart rate and blood pressure varies significantly but for various reasons I can't be treated for that, or there wasn't any treatmnt, so I was effectively told to get on with it. As for laying down in the street - that's what the doctor advised!! I do that and I included this as part of the safety aspect because I will either pass out or have to lay down but be close to being unconscious at that point and there is both the risk of injuring myself but also, at night more so than day, the risk of being assumed to be drunk and I've been verbally abused several times and kicked in that situation. It's not happened fortunately but anything could be stolen. On one occasion I had police telling me to get up and move and although I told them I hadn't been drinking, I wasn't well and I would pass out if I got up they still dragged me up, then commented that I'd lost my colour and panicked a little and then I passed out - their attitude did change when I came round and they apologised. These experiences play a part in how I feel about going out and I imagine you have similar.

On my recent award my points for PIP were e = 10 for planning and following journeys and e = 12 for moving around. I have severe mental health problems too and believe I should have got 12 on both because I do actually go out, on my own, despite the risks so e doesn't seem right but my argument for that is more about my symptoms of mental illness generally. Other physical problems too went towards the 12 for moving around, it's impossible to say if I'd have got that with just one or other although I believe I should have.

Having said that, purely on the planning and following journeys and collapsing anxiety does play a big part in things. Most of the time people are trying to be helpful but I struggle with that so if I could just lay on the floor for a couple of minutes I would recover but I don't cope well with people talking to me at that point, calling an ambulance even though I tell them I don't need one, trying to help me sit me up and sometimes I will try to sit up before I'm ready simply to reassure them and stop them calling an ambulance etc. etc. There are days when I don't go out because I can't face it and I rarely go out after dark. I wonder if it is in part anxiety that is stopping you? There is no certainty that you will have a problem on any given journey, you say it's variable, so it's the anxiety about what might happen that is stopping you (perfectly sensible and reasonable) and I'd have thought this would apply on both familiar and unfamiliar journeys and maybe you are behaving differently on local vs long distance journeys rather than familiar vs unfamiliar? There is obviously more difficulty getting home if you're miles from home and unwell regardless of whether the journey is famiiliar or unfamiliar. Remember a familiar journey can be a long journey involving a train journey.

If you rarely go out alone because of your condition explain that under planning and following a journey descriptor as well as moving around - can you really follow a journey if you have to lay down on the platform just as your train is coming in? Can you guarantee you'd make it to an appointment on time? Would you have to set out very early to allow for this possibility or go by taxi rather than public transport if you can't arrange for someone to go with you? Might you have to go home because you are worried it might happen again after it's happened once? That again is anxiety related, there is no guarantee it would happen again. I'd say reliability will be important for both mobility activities with your condition. You might not have a diagnosed mental health condition but if you ignore the physical side of things for a while and concentrate on how you feel about going out alone and how you feel when you are unwell while out alone and why you go with someone rather than alone you might realise there is a psychological aspect to this that does fit some of the descriptors under the planning and following journeys activity. Only you will be able to judge that. I'm explaining from the position of someone who has daily anxiety, often seemingly about nothing, and I think I'd still be equally anxious about the possilibty of collapsing if I didn't have this other condition, but maybe I wouldn't.

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