Looping The Loop: A follow up to Stepping on the Roller Coaster -Parkinson's and the Benefit System
Paula is a writer from East Yorkshire, who cares for her husband who has Parkinson’s Disease. She previously blogged about her initial experience of claiming benefits, and today talks about how these experiences led to her writing and publishing her own book.
Hello fellow ‘Scopers’, do you like that name? I love being a Scoper. This community has been a life saver for me since I joined back in April of this year. If you have read my first blog you will know that I am a carer for my Husband Bob, who was diagnosed with Parkinson's Disease five years ago. After the diagnosis, we seemed to be living in a strange bubble: everything we did, or thought, was like finding our way through a dense fog and wading through treacle at the same time.
We all have different ways of coping with things. My way was to initially cut myself off from everyone, and get on with the matter in hand. The endless trips to the Hospital, and dealing with the growing mountain of paperwork which arrives when one suddenly realises that life will never be the same again, and of course the finances. Enough said about that. I am pretty sure that every one of you reading this will know what it feels like having that rug pulled from under your feet, and when you manage to struggle back up…well there it goes again, and down you go.
I called this Blog ‘Looping The Loop’, because dealing with the benefits system seems just like that. The loop of filling in the forms, waiting, and waiting… and then the assessments, more waiting, perhaps the request now for a mandatory reconsideration, and finally perhaps the trip to the Tribunal. Thank you DWP for making sure that whatever else we may suffer with, it sure isn't going to be boredom. You keep us so busy. Thanks for that.
I found Scope after Bob's latest assessment for ESA. Even though he hit 65 thirteen weeks later, when it would cease anyway, they insisted on putting him through the ordeal of a face to face, and then scored him zero points. I was furious, and started to look around for help and support, and that is when I found this forum. I am so grateful that I did. I have come to know some fantastic people through being here, and in the small hours when I am awake because of Bob's sleep disturbances, I sit in the kitchen and log on to have a little read. It always helps.
I was so angry at reading and experiencing first-hand the despicable way disabled people are treated when going through these assessments, that I began to write down my thoughts. A cathartic exercise at first, and then others began to tell me their stories, and gave me permission to use them. My cathartic exercise developed into a published book, and even my own support group on Facebook.
For now, we are quiet. Summer has been good: we hardly go anywhere these days because of how Bob is, but we have enjoyed the garden, the fresh air, and the respite from any assessments. I was able to sit and write outdoors which was lovely, but the ever threatening ‘Sword of Damocles’, otherwise known as ‘The invitation to apply for PIP’, is always in our minds.
Thanks for reading this, and if you take one thing from it I hope that it will be that you have come to know that you do not have to face any of this alone, not ever. There is so much help and support around for everyone if you look for it. If you are reading this, then you have already found SCOPE. That's a great start, so relax, and take any help offered.
Can you relate to Paula’s experience with claiming benefits? Let us know in the comments below!