It's taken me a few days to write about this as I've been in (and still AM in) some kind of shock I think.
I received a text on Friday 19th June by DWP to 'remind' me of my PIP assessment appointment for Monday 22nd June. Well, that was the first i'd heard of it! I instantly went into panic mode, I was expecting to have a good week or two to prepare for it, gather together any more info and specialist letters i had forgotten about, get my wheelchair referral letters together and mentally prep myself for (what some said) would be an awful experience. I was also in the middle of yet another dreadful flare up. I had been laid up since Wednesday, needing others to dress me, drag me to the loo, basically look after me. The thought of getting myself prepared when i could barely get through an hour without tears due to pain was overwhelming to say the least. Then something just switched in my head - this was happening and there was nothing i could do about it - so let's do it!
I know a lovely lady who works in the industry, she helped keep my fears at bay. You only really hear horror stories online about people forced to do physical acts to prove they are fit and healthy, people told by assessors that they are lying or seeking attention etc people turned away or made to feel dreadful... but my lovely friend assured me where i was going, this wouldn't happen and that i would get through it and be fine. I clung on to those words and positivity over the weekend. My dear dad took the day off work to get me up to the appointment and push me around in my borrowed manual wheelchair. My mum came with me to the interview room to hold my hand. My husband took the day off work to look after the boys. it was a bit of a military operation but we did it.
My assessor was actually lovely. She knew all about Ehlers Danlos Syndrome and PoTS. She was empathetic and kind. She was great at her job, writing down constant notes whilst i was talking, sensitively asking questions, gently probing for more information when i got sidetracked by wandering thoughts and the overwhelming relief of talking to someone who 'got it'. After about 50 minutes of talking and note taking, she informed me they usually do a physical once over and muscular-skeletal check but that she didn't need to do this for me as she could clearly see my issues. She said i'd presented a great case, given then exactly what they needed in terms of hard, cold evidence (diagnosis and test result letters from specialists, genetics team etc) and that she was very pleased to have met me (and mum). She explained that awards were given by The Decision Maker and that they would probably be done with my case in about 2 weeks, due to them getting through them quite quickly at the moment. I came out feeling positive that I was taken seriously and legitimately and that I had a hope of getting some support. Of course this is again how so many of those horror stories start (i thought i'd be accepted, it was great to finally be listened to... but then i was awarded 0 points! 0!) and so my doubts started creeping in again. I set myself up for the two week wait, trying not to think of that what if's, how i was going to appeal, did i have grounds to? Why didn't she did a physical if i'm going to get turned down, is that legal? WHAT'S GOING TO HAPPEN?
Fast forward to this Wednesday just passed. 9 days after my assessment a brown envelope flies through my letterbox without a care in the world and splats on to my carpet, not knowing why it's very presence is making me sweat and palpitate. I hobble back to the sofa, ease myself down and start to open it. PIP APPLICATION AWARD it states. Oh jeeze, this is it. I pull it out entirely of the envelope and my eyes dart around the page of writing, flitting from word to word, not taking anything in properly, searching for the words DENIED/UNSUCCESSFUL/SORRY/FAIL....
...only it didn't say that. It said something i didn't even allow myself to believe would ever be a possibility. I was awarded Enhanced Rate for both the personal and mobility section, the best possible result i could have wished for. A literal life-changing decision. Tears flowed, i was hyperventilating at one stage - then i had to pull myself together to drag myself on to the mobility scooter and go and collect my little beany from pre-school.
This means i can purchase aids, supports, splints without fear of getting into debt, it means i'm entitled to a blue badge enabling me to be able to get close to places i need to and have better accessibility with the wheelchair. It means we don't have to extend an already stretched loan to cover a car we can't afford for a year (who knows what would have happened after the first year as we wouldn't have been able to afford to do it again for a second year), as i am now entitled to join the motability scheme, swapping out my weekly mobility PIP for a car!
I would encourage everyone to take the steps i have into applying for PIP if you feel you have a qualifying disability that affects your day to day life and/or mobility. Please don't feel you are a burden on society, if you are like me, this is one of the reasons we pay our taxes. I am a proud taxpayer having been in employment from aged 17 and now running my own business (all be it a very small one!) from home and i am not ashamed to say i need help right now. Will i forever? Who knows but for the time being, yes i do. Also, i am a proud NHS supporter, as without the help and support from my completely overworked and overwhelmed specialists/nurses/doctors, i really doubt i'd be here right now or definitely not in a healthy enough state to look after my children and be a functioning human. That very same fact is the same for my husband, after his brush with very serious illness a few months back.
If you are currently in the process of claiming for PIP, keep strong, keep focused, keep positive. Sometimes things can have a very unexpected but awesome outcome.
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.