PIP, again.

[Gaia_rising]

*This is likely to be a long post, if you can't process large blocks of text, skip it, I won't be offended.

I suppose I'm just venting, trying to get things straight in my head. I was awarded PIP in 2018, backdated to March 2017, which was the application date. (Second application, I didn't pursue the first one in 2016 beyond the Mandatory Reconsideration- thought I could cope.)

It was a 3-year award, and, due to some careful admin/delaying tactics, the award expired in March. Fun fact for you, if your PIP is awarded at Tribunal, DWP don't automatically send you the renewal forms, you have to remember to request them yourself... which I did, autism has some uses. I might have been a little over-confident. Since the haemorrhage and associated surgeries in 2015 and 2016, I've had multiple new, long-term and permanent diagnoses, I had all of my paperwork in order, and I've been seeking and following all of the medical advice.

Apparently, that's not good enough. After requesting the same set of forms twice, you know, just to check my answers were consistent, 'oops', the application was declined. Zero points. Mandatory Reconsideration, declined, zero points. The decision maker's letter doesn't refer to brain injuries, or autism, or chronic migraine, or C-PTSD, all of which I have official diagnoses of, it refers to 'headaches', and states that I'm not on any medication for IBS. Seriously. It also states that I 'only have some group work for Mental Health issues', I'm not entirely sure what it is they think the NHS has available, I've completed some intensive 1:1 work, and the psych wrote a letter, detailing that my MH issues were on-going, and would require more interventions...

I'm frustrated. I'm really unwell, between the conditions, and trying to present the difficulties in the way DWP want them. The DM's letter states 'Your evidence is of a medical, historical, and anecdotal nature, it does not detail any difficulties you have.' I beg to differ, but I also know that if I spoon-feed them the exact paragraphs on medical letters that detail my difficulties, they'll bounce back the 'has a good understanding of her own conditions' nonsense, in an attempt to declare me 100% functional. I'm very much not, I'm functional in short, inconsistent bursts, being able to do *thing* on one day doesn't mean I'll be able to do it the next, and the cognitive and physical fatigue are now permanent fixtures of my life, if I have anything to do, it has to be done in the morning, because I'm unreliable to the point of dangerous in the afternoon and evening.

I'm exhausted, I'm chasing my tail, and DWP keep shifting the goalposts. Without the PIP award, the UC doesn't really cover all of my bills, so I'm juggling, it's all well and good to assume that the PIP should be re-awarded, and backdated, but having to 'rob Peter to pay Paul' is compounding the general anxiety.

I don't know why I'm even writing this, I'm trying to 'put on a brave face', with my son having finished uni, but we're at each other's throats, it's awful. I don't really have many friends, and this isn't really something I can share with them, there's not much that can be said beyond "That's horrible, that can't be right!", everyone else has enough struggles of their own without adding mine to the pile.

Solidarity? The systems and processes are vile, they're supposed to support us, but they really just stretch us beyond capacity, the safety-nets are more holes than substance, and they genuinely make us more ill.

I have contact details for a local advocacy organisation, and I'll see if/how they can help. While I'm trying to juggle bills, and contact my Letting Agents about the water dribbling through my bathroom floor and dripping through my kitchen ceiling... I'm so very tired.

[Symundo]

I’m in a similar boat. Give me to weekend and I’ll read all mine I got two weeks ago and can’t be bothered reading it getting wound up and get back you.

You’ll probably have some good advice by then of the Clan in here.

What little I looked at on my PIP there repeating all what I said to them at why I’m ok.

They can’t differentiate from skeletal pain to TBI.

They do play games.

Where in the uk are you. I thought maybe got the same nutty lady.

Oh, on here if I start swearing getting on one, what happens. It’s just the conversations on here wind me up so much that people are being ignored on so many levels it’s pretty dam disgusting.

Cherioos. In a mo flo.

[Gaia_rising in reply to Symundo]

It's a farce, isn't it?

'Headaches', indeed, I have metal coils sealing up two brain aneurysms, and two smaller aneurysms in 'tricky' locations that they don't want to fiddle with...

I'm in South Yorkshire, and, because of the way the NHS is chronically underfunded, I'm 'under' multiple different hospitals and departments, all of which are specialised in their own 'parts', there's no cohesion, because I'm a special little princess, and have so many co-morbid conditions.

Trying not to let it get me down, I'm a fighter. I do try not to curse on here, but that doesn't mean I'm not thinking it.

[Symundo in reply to Gaia_rising]

I’m at the corner West Yorkshire and all specialists were here there and everywhere. I stopped seeing anyone years ago because no one can help, most say I should be dead with my injuries so talking to a someone that only knows a little psychology or physio therapist that’s clueless with anything including physio therapy and can’t be used for intricate TBI.

It’s as if there testing everyone thinking there’s nothing wrong with anyone until they find out different that the don’t listen to.

At the start of mine it said you have large legs, so you can walk. My leg brace says I have small legs with a fair bit of muscle wastage and I used to have huge legs that must be XXXXXXXXL on there notes. Madness ttfn.

Gotta go. Banging headache coming back and couldn’t get any sleep last night.

[Kirk5w7]

Its that interminable treadmill with the box tickers isn’t it.

I can hear them thinking” one round of PIP is enough”, no consideration of this is someone’s life that they have to deal with— forever.

I do hope you can turn this around. It appears also that one has to be unable to think and care for one’s self on any level if you have a TBI. Being as eloquent as you are must mean you are fine.

I thought it might improve , goodness knows how the DEP will cope with all theses covid survivors left with chronic illnesses. The iceberg is just emerging.

Take care

Janet x

[Kirk5w7 in reply to Kirk5w7]

DWP

[Gaia_rising in reply to Kirk5w7]

The covid thing is fretting my son, his grandparents are infirm, and I'm well, I'm 'me', he's incredibly anxious about any possible contagion, and doesn't quite seem to grasp that I'm carrying more than my share of the load on everything, to accommodate his anxieties.

Character-building, isn't it?

[LouBL0u]

Hi

PIP is a nightmare but it is a box ticking to meet the criteria - medical evidence is not enough you have to detail how TBI impacts on you... i googled completing PIP and found a site that lists the questions and how the point system is scored. I'm sorry I don't know the site anymore as I forget so much. But points for safety, i put I've left the house forgot to shut the front door, left the gas on and can't plan a journey cos i get lost etc so all the"normal" things that i used to be able to do are often not happening but it can be very erratic so I'm careful to say "at times I..." Good luck, it's all so overwhelming and exhausting

[Gaia_rising in reply to LouBL0u]

Thank you SO much for that, LouBL0u . It's exactly the external perspective I was missing, because I'm looking at my issues from 'inside', through the logical/linear lens of autism. As much as I 'know' that I'm meant to evidence HOW my conditions impact, I'd gone off on a tangent of 'medical evidence', and I see now that some pen-pusher within DWP is unlikely to have the time to look up all of my telephone directory of ailments and issues.

It's a common autistic trait to assume that others think the same way, I forget that the things I can 'just do', as well as the things I cannot do aren't universal, and I do get spiky when people don't 'get' me the first time. I'll step back, and apply the 'so what?' perspective, that's what's needed here, as much as I try not to 'go there' with all the 'normal' things I can't do any more. (A car has just pulled out on the street, and the light reflecting off it, bouncing through my window is highly likely to trigger a migraine, which could incapacitate me for a few hours, or a whole day, it's tiny things like that I forget to mention.)

Horrible systems, set up to filter out as many people as possible, but I do see where I went wrong. Again.

[LouBL0u]

Hi again

Thanks for such a lovely reply. I'm pleased you have an advocate and hope that you are able to claim PIP. It is a nightmare but use that single focus to highlight the challenges within your day, then match them to the PIP criteria. Good luck!