Getting the PIP

[whisperit]

Well, I had my assessment this morning. Some FYI points:

- I had no trouble in having a home assessment. This was a major relief as the logistics of getting anywhere these days are always a headache. I also feel that it may have helped give a more accurate picture of my everyday life than anything my words alone could have done. e.g. she could see the way that everything I need for the whole day is arranged to be within reach of my armchair throne (not to mention the way my carpet is strewn with small items, stray tablets etc that I've dropped and can't pick up!)

- the questions did not stray far from what they asked in the the application form. She didn't ask for any additional written info or reports

- the additional questions included asking which functional problems were attributable to which specific conditions (e.g. 'which condition is responsible for your fatigue?'). As I said, this is an impossible question to answer when you have several conditions and medications, andy or all of which could contribute to the symptom. I'm struggling to understand how this question helps their assessment - if they want likely prognoses, then they need a different question and probably my consultants' opinions

- there were NO questions relating to housework like cleaning, washing, washing up and home maintanence. Since these are central to helping someone stay independent at home, and may otherwise involve significnat expense, this seems mistaken

- the 'physical examination' consisted of a half-hearted attempt to get me to grip her hands, put my hands behind my head, and to stand and squat. Entirely meaningless.

- overall, my impression was as she said at the beginning (but in diplomatic language). i.e. it's basically to check to see if you are a scrounger. No wonder so many people find it an upsetting and dehumanising experience

[Hidden]

Mike i have just read your post after one of those momentous days where I’ve realised that there are some individuals, some policies, some communities and some systems which or whom I am destined to always dislike intensely.

But the momentous part arrived today when I properly acknowledged that doing battle with them personally is always going to be counterproductive for me because I’m an autoimmuner and one who takes everything far too much to heart. I’d probably have tortured myself with guilt if I’d won my claim when I could still get out and visit the new V&A with my fold out seat stick today.

However I’ve found that comments or situations that should just be irksome, make me tremble uncontrollably, drive up my already too high blood pressure and make my heart race. And the older I get the worse this is for me.

The whole PIP experience was the most perfect example of this for me. And your calm, profoundly wise and intelligent reflections about awful situations and the ignorant attitudes you are so often faced with always drives some kind of extra realisation of this home for me.

My pip assessor ran the same grip and standing tests on me and deemed my grip - which even nasty neuro commented on a very poor - as being only slightly under par.

But unlike you I often escape my throne for studio throne and can usually pick pills off the floor (before the dogs get them and die) - although not just now since rib fracture. But this will not be for long.

So I’m fully reconciled to my “functional overlay” today and hopefully for the foreseeable future and have decided that I will try my utmost to avoid those people and situations who irk me far too much due to my thin skin.

But in your case and on behalf of all those who are fobbed off, misdiagnosed and marginalised by individuals, health care providers, belittled or humiliated by comments from ill meaning strangers, former friends, neighbours, family members and pip officials - I’m still incensed.

Of course I hope like anything that you qualify for maximum rate and that you also never get put through this experience again.

But bearing in mind that our society is deeply flawed I’m also minded to never again expose my own less calm, less dry, less intelligent nature and less detached sounding observations to the test in future. My throne is only in part time use but you deserve this PIP 100% so I’ll just have to hope that common sense prevails. X

[whisperit in reply to Hidden]

Thanks Twitichy

Ah, you too empathetic Right from the start, I decided to view this application as just another dreary assessment - onlyjwith the added benefit that I might win some money at the end. Luckily, this morning I was also feeling rough, so my emotional engagement with the process was low - no spare energy. So it's all cool.

X

[Kevin53]

Thanks Mike. Your last paragraph hits the nail on the head. Best wishes Kevin

[Hidden]

Yes that’s me. And it’s okay being somewhat empathetic in the context of an HU forum I guess.

But I think being sympathetic is actually far more useful and productive than being empathetic. I’m working on making this shift but it’s hard. X

[misty14]

Your pip assessment post is very moving and helpful for us all who may have to go thru it . I agree with you that it must add points having to have it at home rather than struggling into a consultation room somewhere in town!.it is very de- humanising and just don't see how it measures fitness for work!. I just hope you get it. Will be madness if you don't!. Did she tell you when you'd hear?. Good luck and keep us postedX

[whisperit in reply to misty14]

Thanks misty,

Afaik, it's supposed to be an assessment of one's ability to look after oneself independently, rather than the illness. That's why I was puzzled at the lack of questioning about housework - surely being able to do the washing, tidying etc is pretty basic to that? The invisibility of domestic labour?

She said it should be decided in 4 weeks

x

[Hidden in reply to whisperit]

I think this point you are making is key Mike. After all people with so called functional conditions and mental health conditions are elligible for PIP too so medical confirmation of an organic disorder(s) shouldn’t actually be that relevant to an assessment in theory or in practice.

It’s the impact of any type of condition that they should be assessing - not whether it’s functional or dysfunctional. If it stops you functioning “normally” then it’s dysfunctional and being awarded some amount of PIP should be a given. Who, after all, would choose to let a stranger working for the DWP into their home unless something was pretty wrong with them?! X

[misty14 in reply to whisperit]

Not having been thru one myself thankfully but have got DLA . I always thought it was how your illness affects your day to day life . So as you rightly say this should include ability to do housework. If your successful you could use the money to pay a cleaner for instance to help ease your struggles!. This is what the money is for!. Fingers tightly crossed for four weeks time and the right result. Any sign of hedgewig?. X

[whisperit in reply to misty14]

Exactly! Among the expenses resulting directly from my incapacity - a cleaner, gardening (it's a jungle out there), a riser armchair (the most expensive thing I have ever bought besides a house and car), taxi fares to and from hospital appointments (£8 round trip, and 3 visits due next week alone), more expensive food (more ready meals)....not a single one of these things was acounted for in the PIP assessment.

Still no sign of Hedgewig. Your lot must be starting to think about getting fat for the winter now x

[misty14 in reply to whisperit]

Being disabled is a very expensive business Whisperit !. I expect you know that on disability purchases you can be vat exempt. Takes a bit off but not much!. It's awful for you seeing what you can't do needing doing and getting worse by the day!. Taxi fares are hugely expensive I've , just done a £16 round trip to get to my GP surgery for a fasting blood test!. It's too much but what can we do?.

I do hope your appts this week give you more help and treatment!. Fingers crossed . Do you get strong backache and nausea with your adrenal insufficiency?. Got awful pain today but other days can be completely clear. It's so variable!.

Sorry hedgewig has moved on. Yes our brood are fattening themselves up for hibernation!. Can't believe where this year has gone can you?.

All the best for this weekX

[whisperit in reply to misty14]

Thanks misty,

Yes, nausea was probably the biggest symptom of my adrenal problem. Although it must also have contributed to some of my fatigue etc too, the nausea is the only symptom that has vanished with the increased staroid dose. I did get lower back pain, and haven't had that since upping the taroids, but I'm not sure whether that is adrenal-related or down to something else. As you say, it's difficult to tell when things are so variable, as well as overlapping. That £16 taxi ride must have made you wince a bit x

[misty14 in reply to whisperit]

What steroid dose are you on Whisperit?. Interesting that both those symptoms went on a higher dose. This lower back pain is new for me and the nausea !. Test results in a week. i did wince I must admit but had no choice. It was a journey of 2 miles each way. How about yours?. Good luck at the hospital, look forward to your updates and thanks for your help. X

[whisperit in reply to misty14]

Im currently on 16mg methyl pred plus 10 - 20 mg hydrocortisone (equivalent to 2 - 5mg pred) when required. Obviously, this isn't a long term dose, but a temporary holding position. Tomorrow we will consider starting on a new DMARD to get on top of the myositis after the failure of Aza.

My £8 taxi fare is for a round trip of 1 mile

You're helping me at least as much as the other way round, misty, so thank you too x

[misty14 in reply to whisperit]

Wow!. That's a shocking taxi fare Whisperit.!. It must be hard juggling the two different kinds of pred!. It's what I dread if I'm diagnosed similarly!. I'm interested in which DMRD you'll try next. Might be able to help there!. Hopefully you'll be able to reduce your doses!. I'm sorry you have myosotis too to cope with. I'm getting leg weakness intermittently as the steroids come down. It's such a big juggling act for us all. Best of luck and thanks again. X

[Lupiknits]

Well done Mike. I, too, have a "throne" with everything to hand and should perhaps have asked for a home assessment. As you say, beyond asking if you live alone, nothing is taken into account about the simplest upkeep. My vacc is too heavy to manoeuvre to the right place then manage the grip and push, so it's been a year since it was used.

I have no idea whether they go further into how many live in the house, their ages, and disposition. Given that it's the DWP they are more likely to take into account that it's a "female unit" who needs to do domestic things, but probably not because the questions are about you cooking eating, dressing etc. yourself, not little ones.

After feeling like "Oh blow this for a game of soldiers" when my mandatory assessment changed nothing, I'm now going for trial. They are experimenting with paper assessments for decisions apparently. Not me! They can see me in the skin and bone. The way my urge incontinence is carrying on I could easily wee on something. Urge incontinence is one of the most unpleasant things I've had to date: not a clue I need a pee, then it's like a plug suddenly pulled.

I hope you get somewhere. The whole process is so stressful and humiliating and we are definitely guilty until proved innocent.

[whisperit in reply to Lupiknits]

Exactly, Lupiknits. My assessor was quite pleasant, but in addition to the direct questions, there were lots of little clues that definitely made one feel 'under suspicion' and that she was not being entirely open. For example, although I left a note on the front door asking her to come round the back (so I didn't have to get up to answer), she didn't do that, and so now I'm thinking. 'Will the fact that I eventually made it to the door be cited as evidence?'. Similarly, she asked 'Who plays the piano?' 'It's supposed to be me...but...', I replied. 'Chopin, too' she said (obviously clocking the music on the piano). Again, I'm now thinking, 'So is she going to say that's evidence that I am capable of sitting down to play music that requires a high level of manual dexterity?' It's that undercurrent of dishonesty in what they are doing that is most disturbing. x

[Lupiknits in reply to whisperit]

Oh dear, Mike, that may turn up rather like the dexterity in my report. I can hold a 500ml bottle of water and drink from it, I can use a computer and I like knitting = no problems at all with anything 🏋️‍♀️🤸‍♀️🤹‍♂️💩

[Hidden]

I wanted to add to LK’s point. Living alone doesn’t necessarily put you more at risk or impact more negatively on the personal independence of those with disabilities than living with others does.

The pressure on the healthier partner is sometimes going to make them worthy of a carer’s allowance which they will only get if PIP is awarded at maximum rate I believe. And the household relationships almost inevitably suffer in ways that would be very hard for some to explain to strangers. This could even lead to somone’s very fragile personal independence being completely compromised if the carer is the only one with any income and control over the household.

For example there maybe lots of fighting and agro that doesn’t come over during a home visit or there might be unspoken pressure on the person claiming to be awarded that claim - inevitably a huge shift in dynamics within a household if one person is expected to do all cooking, cleaning and housework because the other no longer can. The partner might feel very exploited or even be abusive.

Or children might be expected to take on the role of carers but be out at school on the day of the home visit.

It’s even quite possible that living alone is actually safer for the chronically ill person than if they have to share their space with others. So there are lots of factors that might wrongly count against the claimer who has a partner or family or fellow occupants too.

I think this certainly happened to me.

[whisperit in reply to Hidden]

A very astute point, Twitchy x

[Hidden in reply to whisperit]

Thanks Mike. I just thought it important to flag up that a respectable, tidy home isn’t always a good sign. And a squalid or somewhat messy home isn’t always a bad sign. Things we don’t see that go on behind closed doors etc etc... x

[Hidden in reply to Hidden]

Ps my homes have always been messy regardless of my state of health I should add! X

[Lupiknits in reply to Hidden]

Possible, very possible, Twitchy, and they don't enquire. I don't know which is better. I've fallen twice in the last week and had to struggle to get up. The wonderdog was shaking and shivering down the hall!

Either way has bad consequences.

[whisperit in reply to Lupiknits]

The postie rang with a delivery that had to be signed for a fortnight ago, so he couldn't leave it in the porch as usual. In struggling to get to the front door, I caught my foot in the laptop cable and sent it and myself sprawling to the floor. The net cost for post and packing for that parcel ended up being £379 (the cost of a new laptop!) x

[Hidden in reply to whisperit]

Eek! X

[Hidden in reply to Lupiknits]

Well when I fell hard on toilet bowl in our small bathroom I blacked out. My husband was home in the shower downstairs and came running up after a minute I think.

But then he left me to go and get his dressing gown, hauled me onto our bed and plastered me in a tube of arnica and left me there naked and freezing in shock and too much pain to move while he went to get dressed! Then we both decided to ignore the fact I could barely move without whimpering as knew fractured ribs aren’t treatable anyway. So we went for a very slow walk with the dogs and then to our studio.

By the time I got him to take me to A&E 6 hours later owing to being unable to breathe beyond tiny gasps they were horrified at what they saw and pointed out to him that I might have perforated my lung or spleen!

And he’s a lovely man and I’m blessed even though he is hopeless at spotting serious problems unless it’s something he can fix himself - he goes into denial! But I’m aware that many others aren’t as lucky as me. X