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Looping The Loop: A follow up to Stepping on the Roller Coaster -Parkinson's and the Benefit System

Justice Community member Posts: 197 Pioneering

Paula is a writer from East Yorkshire, who cares for her husband who has Parkinsons 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.

headshot of woman smiling and wearing a tan straw hat

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.

Link to the book is provided with kind permission of SCOPE.


Can you relate to Paulas experience with claiming benefits? Let us know in the comments below! 


  • dexter
    dexter Community member Posts: 7 Listener
    Hello yes I can relate to the benefits problems. I can not claim housing benifits or council tax as after my accident leaving me pyralised from waist down in 1984 as my accident was in Germany as worked there(I was a jockey) i receive 150/160 a week disablement allowance and because I get this which is really for helping me out with extra heating clothing etc they won' let me have housing benifits or council tax all I het from here is 58 a week severe disablement allowance and pip which I have a car with .been trying to get more help for years but no look so far they just don't want to know do you know who I could turn to for this s not been out for years badly need clothing bedding carpets etc surely this is not correct thank you claire x
  • Justice
    Justice Community member Posts: 197 Pioneering
    @ Dexter, you have come to the right place by being here on the Scope forum, I am sure one of the benefits advisers will be able to help you further.
  • Justice
    Justice Community member Posts: 197 Pioneering
    @EdmundCriss, we will certainly take a look at that, although I think it is very important to discuss any supplements you may be considering with the Consultant and PD Nurse first .
  • Nyzzy
    Nyzzy Community member Posts: 5 Listener
    I am so grateful to be here and read about Paula's experience and feedback from others.

    The benefits are a nightmare for me too, I am 52 and care for my daughter who is 29 and has been suffering from Bipolar Disorder since 2006. Financially we have supported ourselves for many years because we were put off by the lengthy process of claiming and my daughter had about three relapses each leaving me no mind to think about anything else.

    Recently we moved to Cleethorpes and I filed a housing benefit claim for my daughter but I was told that we live in an expensive house, we should look for a more affordable accommodation. I wonder if we have to be on the streets before the benefit can be issued? The house we live in was rented by my eldest daughter and she became ill as well, she suffers from a complex psychosis that has so many faces! She was ill for three months and it is during that period that I filed a housing benefit claim for my second daughter. The benefit officer sent me a letter telling me to knock on other doors like a Christian Charity,.... I wonder if having a disability takes away someone's right to dignity!

    I have worked and paid taxes and now that my daughter needs help she is told to go knock on charitable organisation doors? How can she do that? Does it cost cheaper to the government when she is in a hospital? Would that cost cheaper if the government was paying a carer for her? I don't understand. 

    If you have time please do buy my book, I want to support my daughter this  benefit saga is terrible. The energy it takes to run after it is not worthy the amount. The title of my book is Rays of Hope in Stormy Skies and it is available on Amazon as an ekindle copy for the moment, a hard copy will be available next week. Thank you.

    Reading and writing help me cope with loneliness.

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