Back in August the brown envelope of doom came throw my letter box (thanks Mr Postie!), I wasn’t expecting it so at first my anxiety was fine then I opened it read the first few lines and boom the panic set in. Not going to lie how much fear the thought of the assessment process is for disabled people with so many bad experiences from the moment PIP was introduced, that even something as simple as a piece of paper emerging from the brown envelope can insight fear.
The letter said that I was formally being moved from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) I had until the 31st of August to “make my decision”. To make it worse I looked at the date the letter was send it was dated the beginning of August it was now the 11th August hubby had just chucked the letter on the dinning table and didn’t say ‘we have post‘ for 2 weeks!
I most definitely cried as silly and trivial that sounds I was terrified the fear was real. I had my initial DLA assessment when I 24 I’m now the young age of 29 with an added 11 year experience, I was awarded higher rate care and mobility but I hadn’t had a medical evaluation in 16 years. Having muscular dystrophy a Progressive muscle wasting disease my health has definitely declined. Even being able to show evidence and get it being able to trusting of the system is a whole different matter.
Why is there no trust? The amount of Horror Stories. I’ve read countless times about how disabled people having their benefits cut or taken away completely even in worse health than I am, losing their cars, their care, their lives, taking away their Independence.
But I had to do it. My first port of call was someone that has been with me health wise for over 15 years Anna Kent she’s a Neurological Conditions Clinical Specialist I’ve mentioned Anna before in past post everyone needs an Anna Kent, I had to get evidence from a Health professional not really trusting my GP Anna was the best to ask for help, and as always came back with the best advice and even put in a referral to CAB (Citizens advice bureau), Still a little panicked I emailed a few other health professionals to be on the safe side.
CAB where very quick at making an appointment 27th August I had an appointment to help me fill out the 40 (if I’m not mistaken) pages detailing all the things I couldn’t do; from preparing food to getting dressed, from managing treatments to communicating.
It’s the first time I’ve ever used CAB before so wasn’t really sure what to expect, giving an extensive list of my day to day life of all the things I could and couldn’t do and need help with. When your saying it out loud the realisation of just what your day to day looks like on paper hit you, it’s heartbreaking seeing what your life has really come to it can take a huge toll on your mental health, but the lady that was helping me from CAB was an amazing she definitely made the whole process less stressful and put my mind at ease explaining step by step.
Finally adding the amazing letter that Anna Kent had written that was in so much detail of how muscular dystrophy and other medical issues I have that affect my day to day life with the list of meditation from the pharmacy into that brown envelope it went there was no more I could do, no more I could say it was now a waiting game!
After 3 weeks of hearing nothing I called DWP to make sure my form had made it to be informed it hadn’t and it was royal mail’s fault they take a long time to deliver now I know royal mail can be bad but come on there not that bad, just say it’s probably sat in a bag still in a office waiting to be emptied by a member of staff not that royal mail haven’t delivered it yet, told to give it another week and if I still hadn’t heard anything then call back.
On the 9th September I received a text sayimg “Thanks for sending us your ‘how your disability affects you form’ we may need you to attend A consultation with a health professional before we make our decision. We’ll Contact you again if we do.”
More waiting the worry doesn’t stop as every time the post came for the next few weeks my heart sank if I saw a glimpse of a brown envelope.
17th September another text saying this time “We’ve received The written report of your PIP assessment. We will write to you once we’ve made a decision on your PIP. As a Guide you should hear from us within 6 weeks” .
So did they meant I didn’t need to see a consultant the waiting game continued.
Just over 6 weeks later Mr postie delivered a brown envelope. Asking hubby to open it but worried that this could go either way I’m screwed or I’m in no worse position I am now, I held it in my hands for five minutes as I couldn’t bring myself see the results but I needed to suck it up and just read the letter. I read the letter 3 time making sure I was reading it right and all the numbers added up I got Enhanced on both mobility and Daily living. A huge sigh of relief I was going to be ok.
To end – I must admit I definitely haven’t had it as bad as most people, as much as this whole process was had my anxiety levels on tender hooks, I’m glad it’s over.
If you’ve not had a decision go your way, need some advice or just to talk to someone, drop me a line on Twitter an email or leave a comment.
You can also follow me on: