learn from my PIP mistakes!

AKA Everybody Has Been Burned Before 

Although it has been a while since I published anything I've got loads of fragments on my phone, bits of wrting for here and / or multiplesclerosis.net. Blogs about sleep and the lack thereof. The soothing sounds of BBC Radio 4 when all you have to do is sit around and try to slowly get better. But then real life gets in the way and the moment is gone.

To be honest it has been a bit of an emotional rollercoaster (to put it mildly) and some of what I've written seemed a bit facetious in retrospect. But no harm no foul.

In brief:

1. I've had a few visits from a community Occupational Therapist and it has been brilliant to get a bit of movement going. This relapse and my recovery has been a harder slog than previously but every day in every way, yaddah- yaddah-yaddah.
2. I've started therapy, which has been great. The hardest thing about this relapse has been the way it has affected the family (Mrs D, in particular) so to have a space where I can just sound off without having to filter my thoughts or worry about how the other person will take it is immensely freeing.
3. I got the results from my JC Virus blood test and it came back negative, so I'll soon be stopping taking Tecfidera. After a period of "flushing out" the last doses, I'll be straight onto Tysabri - as long as my MRI doesn't come back with any surprises, I guess. The MRI itself was uneventful enough, although it was as much of a hardcore perspective-provider as my last one. When I came out this time my mum was talking to lady who I assumed was pregnant and was waiting for a loved one. It turned out that she was having an MRI to see if the huge tumour in what was left of her bowel (she'd already had half removed) was operable or not. Like a great man once said, too much fcuking perspective.

So that's it. Apart from...

Despite having been on Disability Living Allowance for the best part of a decade due to having a CHRONIC DISABLING HEALTH CONDITION, plus the fact that I was knee-deep in relapse when I was assessed, my application for PIP was turned down.

We found this out at the end of July and we're now over our first reaction (which was basically apoplectic rage leading to depression).

Here are a few things we've learnt:

• The assessment is only based on the information you include on your form. So in our case all the stuff which has come on since then - relapse, adaptations around the house, physio and CBT therapy, worsening mobility - can't be included retrospectively (FYI my application was submitted in January, the assessment was in July). And if I'd got in touch to let them know about the developments, the DWP would probably have asked me to submit a new claim. So the system is broken at best, at worst very much rigged against disabled people - especially people with an unpredictable disease pathway.
• We've been talking to a family friend who works at our local Unemployed Workers Centre - see https://www.tuc.org.uk/sites/default/files/UWCDirectory.pdf to find your nearest option (or contact Citizens Advice, MS Society, MS Nurses, anyone!). Ours has a lot of experience in overturning PIP decisions on appeal but he said that, based on the form I submitted, there was no reason I should have been turned down. So we've formally requested they reconsider their decision based on a number of points in their assesment which were incorrectly scored. 
• If this fails we'll consider taking it to an independent tribunal with advice from the UWC. Or I'll reapply, including all of the recent developments. 

A final word of caution based on our experiences. If you're at the start of your PIP application process, even if you've been receiving DLA for a number of years (as I had), get some help in filling out your form (see the list above as a starter).

Although he said that I should have been successful, our advisor could see that the way I'd worded some of my application might've been open to misinterpretation.

As it seems to have been.