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Stepping on the rollercoaster - Parkinsons and the benefit system

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  • musicfan
    musicfan Community member Posts: 3 Listener
    I have a genetic from birth condition and have been on High level DLA both care and Mobility, invited to Pip and put down to standard on 2 points away from enhanced mobility good bye car and independence I have a lot of problems with my muscles and joints which effects everything walking etc heck I cannot even put my shoes and socks on without my Mrs.  just because I drive a unadapted the assessor said I had  lower and upper strength, it all seems to be a point system made to make you fail or loose your benifits
  • wildlife
    wildlife Community member Posts: 1,293 Pioneering
    @musicfan Are you doing a Mandatory Reconsideration? You can also book a call back from a Decision Maker (Case Manager) to talk about why you didn't get the higher mobility. You need to fight for your rights. Assessor's are lying and cheating people all the time. If you only need 2 more points you've got a reasonable chance of increasing your score. Go for it...!
  • Justice
    Justice Community member Posts: 197 Pioneering
    @musicfan, @wildlife is right, you MUST fight for your rights, these companies, and DWP fail people over and over , it seems as a matter of course. we cannot just sit back and let this become the norm, or acceptable.
  • sue66
    sue66 Community member Posts: 124 Pioneering
    Justice said:

    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.

    Thanks so much for sharing this with us, im appalled  by reading this and all the other stories to follow. My heart goes out to each and every one of you.and it does def seem all depends on the honesty and some compassion shown by the assessor. My hubby was lucky in the fact although he lost the higher rate of DLA which like many of you was put down as indefinite at the time of getting this which means nothing when applying for the PIP.  He came out with low rate for both mobilty and care, so i say lucky as many are coming out without anything. Nil points.  Had of course he had a mobility car the outcome would have been different story.
    Im still waiting for my brown envelope to arrive for claiming PIP, Ive got  M.E. so wont hold my breath as one of the most difficult ailments to prove.
    Justice , i shared your story on my face book timeline.

    Sue 
  • sue66
    sue66 Community member Posts: 124 Pioneering
    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:
    How disgusting and utterly cruel 
  • sue66
    sue66 Community member Posts: 124 Pioneering
    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:
    Oh how dreadful this is to read.  To see what power they have over people and the depths of depression   they are causing .  
  • Justice
    Justice Community member Posts: 197 Pioneering
    @sue66 Thank you for your comments, and for sharing on your facebook page. Why not come and join our closed group on facebook? you will be very welcome. Just message me on facebook if you would like to , and I can send you an invitation, that goes for anyone else reading this who would like to join :-)
  • Wobblyshirl
    Wobblyshirl Community member Posts: 2 Listener
    Thank you for sharing your experience.  I've have secondary progressive MS and Fibromylagia.  I was on Incapacity Benefit for a number of years after having to give up work, I dreaded the change to ESA, would I get it, which group would I be put in?  The forms dropped through my letter box, hells bells filling the forms in was like writing a book and took me a couple of weeks to fill them out and really stressful and made me feel ill.  Fortunately I was awarded ESA and put in the support group, big relief but what about PIP I knew that was to follow but when, as we all know they're way behind changing people over and with all the reports of failed applications hitting the headlines I was dreading the day the forms arrive.  

    Eventually the fateful day arrived, I looked at the deadline for returning the forms and had to ask for an extension, no way would I have been able to complete them in time.  Then you wait and wait until finally a letter arrives requesting that you attend an interiew......30miles from home at 9am....are they joking!!  I was going away on that day anyway and phoned for another date.  Well not only was I given a choice of dates and times to pick from at a location about 15 mins from my home!!  I later discovered there are other centres even nearer.  

    Hubby took me for my interview and fortunately I was able to ride my scooter right into the interview room.  My assessment lasted about 30 mins....was that a good sign who knows.  I spent the next 6 weeks thereabouts stressing about the result, with hubby telling me not to worry it would be ok.  He was right I was awarded enhanced on both care and mobility, tears of relief flowed.  However I've only been awarded it for 5 years....the letter saying 'I have awarded a fixed term as your needs may change.  Ermmm  What don't you understand about Secondary Progressive I'm not going to get better only worse and as I've been awarded enhanced there's no further monies they can give me.  So relief for now with more stress to follow in 5 years.  
  • Justice
    Justice Community member Posts: 197 Pioneering
    @Wobblyshirl.Thank you for posting this, it is , for once a positive experience, if you leave out the part bout you maybe getting better!! They do seem not to understand the words progressive, degenerative etc. I sometimes feel I should take a dictionary to the assessments. Five years time? If I were you I would sit back and be pleased that you are sorted at least for now. Alot can happen in five years, not least we may have a different Government with a more humanitarian outlook :-)
  • wildlife
    wildlife Community member Posts: 1,293 Pioneering
    @Wobblyshirl Great username. I was only given PIP for 3 years and I think they are doing this in the hope they'll be able to reduce it even if you get worse. Why else would they give a 66 year old in my case with permanent disabilities  a timescale of only 3 years. I'm aiming to turn this to my advantage by being ready by then to cover all eventualities.   
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    @veriterc sent me this tip...

    If you have a telephone assessment, challenge any assumption - don't just let stupid comments pass you by, as it is obvious that the caller has no medical knowledge to assess you.
    I was phoned for a telephone assessment, asked usual questions, then "what disabilities do you have?"
    I started to list them ....
    "Sounds like you have a lot .... which is oldest?"
    Polio
    "When did you get that?"
    1956
    "Oh - so you are well over this by now!"
    In no uncertain terms, I told caller that if she had so little medical knowledge, I was terminating the call and she could get a proper doctor to call me when I would continue the assessment.
    Never heard another word - but she really upset me - If only one could dismiss polio in such a way!

    Scope
    Senior online community officer
  • Justice
    Justice Community member Posts: 197 Pioneering
    @Sam_Scope I agree, that goes without saying. I have in fact said to People from DWP, and ATOS and the like that they are making assumptions, and/or reading from a script.
    If you were dealing with a firm in the private sector you would expect, and have a right to be treated appropriately, and given the right information, in other words it would be expected that the people in that firm carry out their job properly. The benefits people are no different, they are doing a job, and if they don't do it properly then it needs taking further.

Brightness