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PIP: Referencing specific numbers with evidence?

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7 months 1 day ago #265127 by T
Is it appropriate to reference and provide evidence of a specific heart rate in my PIP form rather than just talking generically? All my symptoms are driven by an excessive heart rate every time I stand.

i.e. the difference between 'my condition causes excessive heart rate when I stand to cook' vs 'my condition causes my heart rate to reach over 150bpm when I stand to cook' and provide a read out from a medically approved device measured during the activities?

Is it more appropriate to put the numbers as part of my diary entries? e.g. "cooked dinner using my stool, heart rate averaged 145bpm with dizziness and fatigue."

I have a completely hidden disability so I'm trying to ensure I provide all proof I can of how I am impacted but I am not sure what is too much. The difference between a better day and a bad day is how high my heart rate is.

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7 months 8 hours ago #265155 by LL26
Hi T,
I would say that a diary entry, as you describe, showing the heart monitor readings would be good. I don't know how readable are the print outs and whether they would be understood by DWP. Also a random print out may not show any more than your diary entry.
I think you need to be a bit cautious. You have said standing to cook causes the heart rate to increase. DWP will then say, you can sit down to cook, this may then be insufficient to gain points.
Other things you may want to think about include whether you an move safely in the kitchen. Will just sitting down be sufficient? Do you take a long to do things, eg twice as long as a non disabled person, perhaps because you have to rest - this might be particularly relevant to dressing, bathing, perhaps also eating, maybe to other descriptors? Are you safe when doing descriptor activities?
Do you need help from someone to monitor your condition, as opposed to simply using the heart monitor. Are there problems getting in/out of the bath? Do you need a seat?
If you continue to have fatigue and dizziness even when sitting, then this may mean that you can't do the descriptor activity to an acceptable standard.
I hope this helps.
Good luck.
LL26

Nothing on this board constitutes legal advice - always consult a professional about specific problems
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6 months 4 weeks ago #265181 by R_
I also have a condition that causes my heart rate to increase significantly when standing and walking. The first time I was assessed it was a face to face assessment and the assessor commented on how quickly I recovered rather than how much I struggled to walk just 5 metres to the assessment room. A very poor assessment by a nurse who I believe understood my condition but failed to explain in any detail. All corrected at MR.

I had my renewal recently and I gave examples, included that my heart rate goes above 150 when I stand and walk as well as doing other tasks. I don't think this is enough in itself. Someone who exercises with a heart rate monitor may often have their heart rate going above 150 and staying at that level for some time without it causing any problems so a case manager without much medical understanding might relate it to their own knowledge and not understand the implications of that heart rate increase in other situations, without exertion. You'll need to explain whether the increase occurs immediately on standing, every time or just sometimes, how quickly it goes back to normal or doesn't it, what happens as a result of it being high, how do you feel while it's high and why does it being high stop you doing the task, or cause problems with the task? Stating the heart rate on your PIP form is fine but you need to pad it out a lot to explain how that affects you in relation to the different PIP activities.

Please understand I'm not saying that your heart rate increase isn't causing you problems, just that it's not the heart rate in itself. I got points on various descriptors on my renewal by explaining in detail not just the numbers but the way I feel as a result of the increase and the problems that I have had attempting to complete the various PIP tasks. I don't have help so I do complete them and in most cases I got points for needing to use an aid but also in some cases for needing support or assistance, despite not actually having it, but because I need it. I focussed a lot on the reliability criteria so that they couldn't say that because I manage to complete the tasks I clearly don't have problems with them.
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6 months 4 weeks ago #265219 by TheHud
I am currently doing my PIP 1043 review, nightmare and rooting through the posts for a similar form that seems to be different to everything else. I cam across your post. In the nearly years since my last assessment I have collected the diagnosis Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, is this what you mean. If it is there are significant other symptoms to tachycardia when standing still, including sitting still for many. In my case its the full monty with crisis level BP, blinding headaches, potential blackouts, GI issues, fatigue and brain fog, all over body pain and purple legs due to blood pooling for some. Also adrenaline surges, so for many the after effects of doing something that made their brains release ecessive amounts of noradrenaline, and adrenaline in order to get the HR up to compensate for a dysfunctional autonomic nervous system, are extreme exhaustion and nausea that means they are too ill to eat what they cook :)
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6 months 3 weeks ago #265223 by T

I think you need to be a bit cautious. You have said standing to cook causes the heart rate to increase. DWP will then say, you can sit down to cook, this may then be insufficient to gain points.

Thanks LL26. I've got lots of other detailed examples of how my disability specifically impacts me and why the aid is not enough as even with it I am still symptomatic, just less so and on some days unable to start the task at all as I am so fatigued and dizzy. I just didn't know if it was OK to supplement those entries with numbers or not. I have POTS and my symptoms are textbook and I understand the physiology behind it. To me that helps explain why I feel like I do but it seems that I just need to say '"'m experiencing X, Y,Z in these scenarios and that means I cannot do X" and not try and justify myself too much!

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6 months 3 weeks ago - 2 months 2 weeks ago #265226 by T

I have collected the diagnosis Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, is this what you mean.
Yes fellow POTSie here although not confirmed hyperadrenergic. I'm not just focusing on heart rate but it's a really key indicator that I'm struggling. Once my HR gets over the 150bpm mark I'm incapable of attempting many of the activities in the PIP form but of course there's all the actual symptoms I need focus on more. They're so hard to describe though, I don't really have chest pain or even feeling super dizzy or faint, just this overwhelming feeling in my brain saying 'sit down!!!' I think I need to look up more the official words used around orthostatic intolerance which is really what the problem is rather than the heart rate. While I get lots of nausea my main issue with eating at night is I just am too tired to finish my meal. I don't stop eating when I'm full, I just slow down like a clockwork toy that's run out of energy.
Last edit: 2 months 2 weeks ago by Super User.

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