That’s
rather an old fashioned expression now isn’t it? It means, to irritate
exasperate or annoy.*
*Look
at this wonderful link, which,
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.
