In 2014 I started my first ever claim for PIP that’s Personal Independence Payment for those that don’t know the benefit lingo, it’s a disability payment that has two levels to it, standard and enhanced. In 2014 I attended the Reading assessment centre and met with an amazing rheumatologist who knew all about Ehlers Danlos Syndrome. He was empathetic and as I left the centre although it had been an awfully stressful experience, it hadn’t been as bad as others had made out. My award arrived and I was given an enhanced decision on both mobility and care, which when you look at the questions was fair, the aids, the care Andrew had to provide behind closed doors and the constant escorts as I am no longer able to travel on new journeys alone, meant the gentleman had listened with care and written a detailed report for the DWP to base their decision.
Move forwarded to the end of 2016, my reassessment paperwork arrived and most of it was tick boxes, how had my condition improved, better, worse, the same. I answered the questions accordingly and sent the form back, we hoped the process would be a fast one, we were desperate for a new car and wanted to get a Motability car but with less than 12 months left on my award they couldn’t help. As Christmas got close, no sign of an assessment, we got through and into the new year, the old car just played up to the point of falling to pieces, it had reached its death bed. So that had to be replaced. We had to get finance for a newer car, but on the plus side the newer car was similar to a Motability car, it was new, light weight, easy to drive and might mean on good days when I was well enough to leave the house I would be able to use it.
It was another two months until I got the letter to explain I would be having a home assessment on the 3rd April. I was shocked that I had been offered an assessment at home with no fuss but maybe being on enhanced rate, this was standard procedure. My appointment was at 10:30am so the night before we headed to bed fairly early hoping for a decent nights sleep.
As you can imagine Mrs Stressy Pants, yes me, got next to no rest, I was worried sick how this would pan out, the press had been rife with stories of benefits being cut and poor assessment decisions, so I just felt on the back foot and the assessor hadn’t even arrived.
There was a knock at the door at 9:30am and I panicked, it couldn’t be now, this was too early!! The appointment was for 10:30am, I was at this stage still resting in bed due to pain and fatigue, so hubby ran down and yes of course it was an hour early assessor. He set her into our front room and then came to get me out of bed, she would sadly just have to wait. So after helping get me up, dressed in PJs and dressing gown, trying to tie my messy hair up and cleaning my teeth, hubby then got me downstairs, the assessor missed that bit, me bum shuffling down our stairs, I’ve been doing it for years now, I can’t deal with having a stair lift fitted! We got my crutches and I met her, she was very young, she mentioned her name and job, but I couldn’t tell you who she was. We sat and started our meeting. I can’t tell you much of what happened, it’s a blur now, but we went through my form. All I do know is at the beginning she admitted that she had googled EDS that night to check up on the symptoms etc before coming out to me. She didn’t ask me about my memory, the last assessor did number games and alphabet checks, nothing like that this time. She didn’t ask me about any depression and to be fair I forgot, I have terrible “brain fog” I can’t remember anything, so if you don’t ask me a direct question I won’t remember to tell you something.
In fairness I should have just written, pages and pages of lists, but this would have kept her at the house for weeks, however it would have meant I got everything done and thoroughly. She asked to physically check me which I could do, of sorts but it hurt, but I hide my winces, the pain, from everyone it’s habit.
After an hour she felt she had done everything she needs and thanked us both, Andrew had sat through it as my witness but I’m not sure he will remember much, he can’t remember what he had for lunch yesterday 😳
A few weeks later the dreaded brown envelope dropped through the letterbox, I sort of knew before I opened it, I had been downgraded from Enhanced to Standard, in their opinion I “have got better”. My chronic debilitating illness has miraculously improved??
Two things that stand out from the reports are, my medications, I state that I require aids not only to remember to take them but also I have them all dispensed via the Chemist as I was getting confused with my tablets, so they are sent to me in Nomad packs, the DWP awarded me zero point saying no aids used or required. Secondly the DWP claim I am able to plan a new journey to a route I’ve not travelled before. That is impossible, I can’t even travel 30 miles alone. My furthest is about two miles up and down our hill and I explained that, I can get to Sainsbury’s/Tesco but no further, again zero points awarded as I can plan a new journey according to them. The whole report is full of inaccuracies and non truths, it’s hard to read something so wrong.
So the first step was Mandatory Reconsideration, which we started back in April and the DWP stood by their decision. The next step is appeal, this means I have to take them to court and fight for my rights, which I am terrified to do, but I have to, they are wrong, if I could travel alone I would do so much more with my life, if I could remember things, like my meds, I would be employable, this is more than just a benefit, this is about the bigger picture. So we are still waiting for our day in court, despite the DWP’s wish that it was overturned, I just have to go in and try and have a clear less foggy day. Maybe write lots and lots of notes to help me get through those stressful few hours
Wish me luck x