It’s giving me the pip

That’s rather an old fashioned expression now isn’t it? It means, to irritate exasperate or annoy.* 
*Look at this wonderful linkwhich, if it’s new to you, will explain all.

Oh, those people at the DWP knew what they were doing. I bet there were public school boys involved who’d read their PG Wodehouse and were having a little private snigger at the connotations, the nuances of which us plebs wouldn’t ever understand.
Well, I have thoroughly got the pip.
There’s another big stack of its paperwork lying on my desk and it seems so unfair.

We had finally got the letter about transferring Nick’s DLA to PiP and I duly filled in the Work Capability Assessment form, being very clear about the extent of his impairment. Also, names and contact details of all the various professionals involved in his care, and 30 pages of supporting evidence including his CHC assessment done at New Year. My printer had broken so I went to the library to make the copies, and write Nick’s National Insurance number on each side of every page. Just doing that bit and checking it all took over half an hour. Then I went to the Post Office and posted it off.
Job done, I thought.

On Thursday (admittedly a quick turn around) I got a new application form for PiP, this time addressed to me. I couldn’t understand why. It was obviously a different form and generated from the previous one, but why? What part of “diagnosed with Huntington’s Disease in 2010, progressive condition, cannot dress, wash or feed himself, acute dysphasia and cognitive impairment” had not been not quite clear?
The questions were almost identical to the previous form, asking the same things about what can you / can’t you do for yourself.  I felt very anxious about this and why they were asking the same things again, as if to try to catch us out – as if Nick were just pretending to have Huntington’s Disease, you know, just for a laugh and to con a few quid out of the public purse.

The first time Nick applied for DLA, ten years ago when his symptoms were too visible to ignore, when he had been sacked from his job because he kept dropping things and he had been told he was no longer fit to drive, he was turned down.
His Huntington’s advisor in the north east appealed and this time won by a couple of points.
Not because he had been diagnosed with a life limiting progressive illness and was suffering from panic attacks, acute disorientation and stress incontinence, but because he was deaf in one ear and had to wear a hearing aid. Give me strength! He got his DLA, though. And a Blue Badge

Back at my desk, May 2019, I kept circling this new lot of paperwork. Eventually the penny dropped that this is Part 2 of the application, the Daily Activities Assessment to establish the extent of Nick’s support needs. It never occurred to me to look this up online, I had just thought that you made the application and then someone would get back to us with a yay or nay. Goodness, how naïve.
The damn thing is sitting on my desk and I will just have to woman up and fill it in. 
Safina, the advice worker at our local Carers’ Centre, gave me a crib sheet of the points system (“Cannot stand and walk unaided more than 20 metres – 12 points”) and it is immediately apparent that Nick will score highly on all counts.

What grieves me though, apart from the exasperation and annoyance of having to spend another chunk of my time going through all this again and gathering the bloody supporting information all over again (yes, they want that too) is that it’s always time I could be spending with Nick, being with him rather than closeted up somewhere I can concentrate doing this for him. He’s oblivious of course, I’ve told him that his benefits are changing and I’m having to apply for the new version of DLA but he doesn’t really retain the information or understand. 
Just have to suck it up and fill the form.  One of my most hated tasks. I’m a right- brain intuitive with "unusual" handwriting. Some people have the neat and orderly form-filling gene, but me, no. It’s a painful chore. And that’s me with two degrees! How must it be for someone not confident with their literacy, struggling with an impairment, trying to do it for themselves?

And then underlying all that is the actual content of the questions. Every single part of it only highlights exactly what Nick cannot do and will never do again. Leave the house unaided. Walk 50 yards. Prepare a simple meal. Make a budgeting decision. I know all these things because I see them every day but seeing it in such quantitative cold hard print makes it very real and only adds to the cruelty of this horrible illness. But there we are. All I can hope for is that he gets the award without too many further hoops to jump, and that someone who reads it breaks out of their Bot mould for a few minutes and learns a little bit about what it really means to be living with Huntington’s.