Stepping on the rollercoaster - Parkinsons and the benefit system — Scope | Disability forum
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Stepping on the rollercoaster - Parkinsons and the benefit system

Justice Member Posts: 206 Pioneering

Claiming for benefits can sometimes be far from an easy ride. This week, Paula, from a small market town in East Yorkshire, shares her experiences of caring for her husband Bob, who has Parkinson’s Disease.

When my husband was diagnosed five years ago our life as we knew it finished. Overnight everything changed. He had been self-employed, and to be honest by the time I managed to get him to agree to see a doctor - which took me almost a year of nagging and pleading - he was hardly able to walk. He simply came to me one morning and said: “I can't go on anymore”. That was when we stepped onto the rollercoaster.

It was a very traumatic time, suddenly he could no longer carry on his work as a self-employed gardener. I had to call all of his clients, many of whom had been with him for years, and many were in tears. I found myself comforting them on the phone instead of the other way around!

 woman smiling to camera

As someone who had hardly visited the doctors my husband was so lucky in the GP he was assigned to. His doctor was, and continues to be, incredibly supportive. It took from September to January though before he was able to see the neurologist, and rule out anything else such as a brain tumour, so this was a very worrying time. He was also unable to take any medication during this time as because they wanted to see him as he was - so to speak - and not to have any of the symptoms masked by medication.

It was at this time that I became embroiled in the benefits system, and it soon became clear to me how inefficient, complicated, and uncompassionate the system is. In one way we were lucky as whilst my husband was self-employed we had taken out a private insurance policy to cover any event like this, but like all of these policies that also took some months before it was up and running.

My husband very quickly received a form to fill in to apply for ESA, and it was just before Christmas when he had his assessment. I went along too, because as well as the Parkinson's he is profoundly deaf, and has been since birth. We had never thought of his deafness as anything he needed help for; we just got on with it. How naïve we were.

The assessment seemed not too bad, although I had to repeat everything that the healthcare professional said. English was not her first language, and she made no effort to speak up. Knowing how ill my husband was - and remember he had no medication at this time - we thought it was a forgone conclusion that he would be put into the support group. How wrong we were.

blue door in woodland

A few weeks later I took a call, and almost fell from my chair when they told me that he had scored zero points,and would have to sign on at the Jobcentre. To cut a long story short (or this will turn into a book) I got our MP involved, and made sure I made enough of a nuisance of myself that the DWP were in no doubt as to who we were. We managed to get the decision overturned at the mandatory reconsideration (MR) stage, and he has been in the support group until March this year when they asked him to reapply. Zero points again! I did the same as last time and it was overturned again at the MR stage. 

ESA is finished now as Bob was 65 a few weeks ago. He has DLA for both care and mobility, and we dread the day when the ‘invitation’ to apply for PIP drops through the letterbox.

I was so incensed by the whole scenario that I decided I would write a book about the benefits system in the UK. Many new friends from the Scope Community have allowed me to write about their experiences - all anonymously of course. I am progressing well with the book, and hope to have it completed by end of September. If anyone else wishes to tell their story just let me know through the Scope forum.

I have also started a disability and benefits support group on Facebook. It is not to give advice, I am not qualified to do that. I think of it more as a virtual drop-in centre, so if anyone feels like joining for a natter, and a virtual cuppa, let me know. 

Keep on fighting, I know I shall, and look after yourselves. Remember you are not alone in your troubles. Scope is a great place for help, information, and support.


What experiences do you have of claiming for benefits? If you’re a carer, do you have any similar experiences to share? Let us know by leaving a comment below.



  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Thank you so much for sharing this @Justice

    Senior online community officer
  • Justice
    Justice Member Posts: 206 Pioneering
    @ Sam-Scope, my pleasure :-)

  • foxuk
    foxuk Member Posts: 102 Pioneering
    I just got the 'your claim will normally be dealt with in 16 weeks' letter. Yes I am being serious 16 weeks to handle a transfer from DLA to PIP.
    The thing that really got to me was the bit about recording the assessment. The description of the recording device allowed was the same as one used for police interviews. It had to produce two tapes or CDs and one had to be given to them at the end of the interview.
    I would also have to sign an agreement about the use of the recording.
    I am unaware of any portable device for simultaneously producing recordings on two tapes or CDs. Even if there is one it would cost a fortune, which is why our police still use tapes and haven't upgraded.
    Surely this is something that should be complained about at the highest level?
    For people (like myself) who have difficulty with hand written notes, this is an apparent breach of the equalities act as the conditions for reasonable adaptions are unreasonable.
    P.S. Like many Carers I am also a Disabled Person myself.
    P.P.S. Any chance of a link to the facebook group?
  • curious212000
    curious212000 Member Posts: 2 Listener
    Please get back to me I have Bi -Polar and life is a nightmare now trying to claim P.I.P. I have just broken my ankle and in a lot of pain, I will write to you about the D.of.W.and P.  how it is breaking the law every day. This department is not fit for purpose and needs a legal case to prove my point I am willing to pay a share of the costs involved as I know I will win.
  • Justice
    Justice Member Posts: 206 Pioneering
    @ curious21200. I hope that you get on with your PIP claim, I know it is not ever an easy experience. Perhaps you should post this in ask a benefits adviser, there will be someone about on Monday who can help, and/or point you in the right direction.

  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Please get back to me I have Bi -Polar and life is a nightmare now trying to claim P.I.P. I have just broken my ankle and in a lot of pain, I will write to you about the D.of.W.and P.  how it is breaking the law every day. This department is not fit for purpose and needs a legal case to prove my point I am willing to pay a share of the costs involved as I know I will win.
    Hi curious and welcome

    It would be very helpfull if you could open up a new thread and we can keep all your posts together making it easier to give you the best advice

    Be all you can be, make  every day count. Namaste
  • andstep
    andstep Member Posts: 4 Listener
    thank you for sharing your story. i was 2 points short of higher rate P.I.P as i was told I could plan and follow a journey. Not sure how i could make this journey. So i have taken a loan out and bought my own car at 68 its a bit of a worry but at least I do not have to fight this awful system any more and what i do receive pays for the car.  If i had been 12 months older i would have stayed on DLA .But to be positive I  have more cash in my pocket.My heart goes out to those who are still fighting this terrible unfair system and the sooner things change the better.
  • Wonky61
    Wonky61 Member Posts: 5 Listener
    I'm lucky somehow because I have so many physical problems, also have Essential Tremor and to cap it off I also have Mental Health issues. It sounds crazy but because of so many different conditions back in 2012 when I had my first ESA assessment after the benefits shakeup the DWP assessed me at the age of 51 as never likely to work again and subsequently put in the Support Group.
    PS. Why I said shakeup, I had a laugh to myself! "shakeup" how appropriate for one of life's Movers' & Shakers - a term of endearment for us ET'ers!
    Hope things are resolved asap!
  • janice_in_wonderland
    janice_in_wonderland Member Posts: 265 Pioneering
    Thank you for sharing your challenging experience... 
    My dad suffered from Parkinson's in addition to other conditions... 
    Im on the rollercoaster atm as I'm suffering from both mental & physical challenges and look & sound fine but as symptoms fluctuate I feel unstable to be self supporting despite the fact I would be so happy to feel fit & healthy every day & coming to terms with it has never been easy to accept as I am such a determined person... 
    I don't have a partner, lost both parents and no contact with family in UK apart from my niece who I cannot expect to support me... 
    I take each day in hope of winning appeals for ESA & PIP 
    wishing everyone all the very best in winning a lengthy worrying battle 
  • nowwavingnotdrowning
    nowwavingnotdrowning Member Posts: 2 Listener
    Our daughter got her "invitation" for applying for PIP 8 months before her Motability car had to be swapped at the latest. This for a 16 year old who was given an indefinite DLA award when she was 2.
    What really annoyed me was that we were forced into a process with a set of deadlines when there was never any question that she was entitled. The worst that we could have had would have been appealing what rates she got but because it happened so close to the Motability date we had to make alternative plans should we not have Higher Rate Mobility in time. We had to order a car that we weren't sure we would be able to pick up! All that unnecessary stress to ask a ridiculous set of questions when applied to our daughter. Can she operate a budget? At best she thinks money is pretty! She's 16, non-verbal and has the mental age of a toddler. Can she plan a meal? Only if raiding the biscuit cupboard counts. The assessor didn't even bother seeing us face to face, it was done by phone! 
    A massive farce. Hours of time wasted and stress caused simply as part of the DWP's effort to save themselves a few quid. She got both Higher Rates, as she had on DLA, first time with no issues. I deeply resented the whole process that I needed like a hole in the head at that time.
  • Andreasuperstar
    Andreasuperstar Member Posts: 13 Connected
    Oh @justice my heart goes out to you and your husband.  What a diabolical mess the benefits system is, in fact it is an utter disgrace, brutal and feels unlawful.  My financially independent life came to an abrupt halt this year due to my health problems leading to the loss of my career.  Prior to this I had never claimed anything.  I had no idea what hell I was to enter applying for child tax credits, ESA and PIP.  The system treats vulnerable members of our society as if we are all liars, that we are not to be trusted and they face us against assessors whose role is to divert as many of us poor sods away from the benefits system as is un-humanly possible.  My husband, I'm sure, just thought I was being prematurely negative and had naively believed the stories I had read through forums, were the minority and I would probably have a nice assessor with a positive outcome.  Has that ever happened I wonder?  So, I have just had my PIP face to face assessment and the written outcome.  I was as popular as a UK entry in Eurovision, nil points.  Aaaarrrgh.  It shouldn't have been a surprise, her opening words at the actual assessment were '' I continued working (as a nurse) with a broken coccyx and while on crutches''.  She also commented ''so you've not sank to the depths of sitting in your pyjamas all day watching Jeremy Kyle?'' and ''I was going to set you some exercises but being hypermobile you won't have any mobility issues''.  So my fate was set through these revelations of her underpinning prejudice, bias and assumptions about people who are unable to work due to their health conditions.  I feel like the system has chewed me up, spat me out and at a time when I have been at my most vulnerable. To be assessed by insensitive morons on a points system is vulgar and offensive.  I have developed panic disorder as a result of the stress.  I have considered ending it all more times than I would like to admit.  I was once strong willed, confident, motivated, a go getter....what a difference.  Thank you benefits system for NOTHING.  Their response #sorrynotsorry  @justice, do your utmost to expose the brutality of these assessors and the unfairness of the current benefits system.  Best of luck and best wishes to you :neutral:
  • Andreasuperstar
    Andreasuperstar Member Posts: 13 Connected
    I wanted to add a snippet from my Auntie's experience, she was 'observed' to have no difficulties with her hand because.... she was holding a walking stick! I've also heard of another case who, because she did her shopping on-line due to very serious mobility issues, was determined to 'have good keyboard skills' and could therefore be seeking employment in this line of work.  Anyone who has a successful assessment, still doesn't 'win' as they face further and repeated assessments.  It's torturous and should be recognised as such.  
  • wildlife
    wildlife Member Posts: 1,308 Pioneering
    edited September 2017
    @Andreasuperstar Hi, like @Justice I too am fighting the system, I've been through the PIP process and through ATOS complaints and still no-one will accept the lies on my report. I'm now with ICE for the complaint. I've made a Subject Access Request under the Data Protection Act (check out ICO website for details of how to do this) and now have a case open with ICO to investigate the "incorrect data" on my assessment report which actually is illegal. I am also asking questions of HCPC after my assessor put a false reg. number on a form I would never have seen if it wasn't for having made the SAR request. According to them she is registered with a different number as a Paramedic. So someone is not telling the truth. It's a long term commitment but I have a review in 3 years and hope by then to have enough proof of malpractice to get through it without the data from my first application being used again unless it's been deleted or corrected which is the aim of all the action I'm taking. It's time assessor's who lie were exposed and made accountable for what they're doing to people.
  • Rascal
    Rascal Member Posts: 10 Listener
    Thank you so much for sharing your story.
    The shime system is deeply flawed & the assessment they use can best be described as a 'blunt tool' I feel. 

    I recently got reassessed for my PIP a year early. I went from enhanced rate for daily living to nothing. Scoring 2 points. When I asked for a report of the interview it beared no relevance to the one I attended.  I was at my wits end. As after 5 years of hospital tests & operations (some locally in Birmingham & some in Salford) I'd just enrolled on an access course at college. I hope to progress to do a degree in 2018. With an aim to getting myself a career & a more stable future financially 

    It was the SCOPE helpline that 'saved the day' for me. A wonderful benefits adviser arranged an hour long phone interview & produced a letter for me to send (along with my evidence) for Mandatory Reconsideration. She also advised me what to do should I have to go to tribunal. I haven't received a decision yet. But I cannot begin to put into words the relief I felt after that phone call. At least now I know I have the best chance at fighting for basic rate. 
  • molliemoore
    molliemoore Member Posts: 12 Connected
    Hi wildlife,My tribunal is on 29 Sept and my assessor told lots of lies about me, can i ask what the ico website and what does it do pmeasr.x
  • Styal
    Styal Member Posts: 5 Connected
    Like @andstep I was 2 points short for PIP higher rate mobility, receiving zero points on planning and following a journey but had previously received higher rate DLA. Easy way for them to try and reduce the benefits bill I guess. I am fighting it all the way and will go to a tribunal appeal. May I ask @molliemoore how long you've had to wait since PIP assessment and mandatory reconsideration process til tribunal date received?
  • Becky77
    Becky77 Member Posts: 1 Listener
    Please get back to me I have Bi -Polar and life is a nightmare now trying to claim P.I.P. I have just broken my ankle and in a lot of pain, I will write to you about the D.of.W.and P.  how it is breaking the law every day. This department is not fit for purpose and needs a legal case to prove my point I am willing to pay a share of the costs involved as I know I will win.
    I am appealing ESA and am waiting for the decision for PIP. I would be interested in whether you can bring a case against the DWP as I have often discussed with my Mum/carer whether a group can't get together to sue the DWP. I have ME/Fibro so I am too tired and brain foggy to work out how to do this myself but I would happily tell you about my experience, especially if I win my tribunal, if you need evidence of lies that their assessors tell.
  • wildlife
    wildlife Member Posts: 1,308 Pioneering
    @Rascal Just in case your MR doesn't give you an award you're happy with, I wanted to say that I failed mine but didn't stop there as I was determined not to go to tribunal. You can book a call back from a Case Manager anytime to talk about your claim and ask why your evidence isn't being used. I did this and got a 2nd MR with an agreement that if I sent further evidence they would look at my claim again. I was then offered higher rate mobility. I had also made a complaint to ATOS which helped convince the DWP DM I wasn't happy with my assessment or the report. 
    @molliemoore The ICO are the Information Commissioner's Office and they regulate the Data Protection Act. Everyone has a right to access their own personal data by making a "Subject Access Request" to any organization that holds information about them. After getting all your documents you can then bring a case against whoever has incorrect information about you to try and get this changed or deleted. I have done this through ICO but don't know if it will work. I have sent a list of all the false statements on my assessor's report to ICO for them to investigate.
        I've also contacted my MP to let him know what I'm doing and to ask for help. Will keep you updated..
  • riche
    riche Member Posts: 3 Listener
    All levels of government and all public funded organisations need to prove they are well managed

    I suggest a management accreditation system
  • Justice
    Justice Member Posts: 206 Pioneering
    Thank you all for reading my blog, sorry I have not been here in a few days, have been on another planet with dental pain !! @andreasuperstar, reading your post I was sitting here with my jaw dropping. How the hell can your assessor dare to talk to you in that way, it is nothing short of insulting, and appalling. I really hope that you have the energy to write and complain about her actions?


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