What part of I've got Parkinsons do you not understand????

Just had a letter from the benefits office regarding having to fill in another medical questionnaire even though I only filled one in and attended an assessment last September. I was told I was not fit for work.

I asked today why am I being called back so soon and was told that they check every 6 mths just in case I got better!!! I said that was highly unlikely as I have PD and things will only get worse. I have to get someone else to fill in the form as my writing is too bad now and now have to go thru the stress of waiting to see if I have to attend another assessment. Stress I don't need. Oh well keep smiling lol.

33 Replies

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  • Hi Cags3 :-)

    It just proves how IGNORANT people are about this hideous invasive illness!! Its vital that people are educated about this Chronic Neurological Condition called Parkinsons.....I never use the word "Disease"

    The last thing we Parkies need is stress, god knows we`ve got more than enough to go round!!

    You got the right idea to keep smiling...PMA...Positive Mental Attitude :-)

    Anyway take care and have a great stress free weekend :-)

    Andy

  • hi andy - how are you and how s the fight going ? :-D

  • Hi Shasha :-)

    The fight is still ongoing but I didnt expect things to happen overnight.....slowly slowly catchy monkey as the saying goes.

    I`ve sent an e-mail detailing my situation to my union, to ACAS,, The Equality & Human Rights Commision, Parkinsons UK, My local newspaper and local radio station and regional TV Station. My regional BBC TV station called me and they may take up my story as will my local BBC radio station......Fingers crossed!! :-)

    My spirits are up and I will not let things get me down :-) and I`m still looking for work.....Oh and the unemployment office are putting me in touch with a disability employment advisor. I`ve also been put in touch with a lawyer who specialises in employment law..........WATCH THIS SPACE!!! :-)

    Take care xx

  • Hi Shasha :-)

    The fight is still ongoing but I didnt expect things to happen overnight.....slowly slowly catchy monkey as the saying goes.

    I`ve sent an e-mail detailing my situation to my union, to ACAS,, The Equality & Human Rights Commision, Parkinsons UK, My local newspaper and local radio station and regional TV Station. My regional BBC TV station called me and they may take up my story as will my local BBC radio station......Fingers crossed!! :-)

    My spirits are up and I will not let things get me down :-) and I`m still looking for work.....Oh and the unemployment office are putting me in touch with a disability employment advisor. I`ve also been put in touch with a lawyer who specialises in employment law..........WATCH THIS SPACE!!! :-)

    Take care xx

  • Thanks Andy. That's all I can do is keep smiling. Have a good weekend :-)

  • Hi Cags3,

    They are just a bunch of tossers, i got a letter send back because my signature was different , when i explaind why my sig had changed they said that i had to get it varifed by a lawyer , luckely my wife is a lawyer and now hs full power of attorny over all my affairs , i now direct them to her, its a sad state of affairs that we have to do this in order to get people in authority to just listen to us ,

    keep you chin up

    regards

    Al

  • Oh , I was asked the outher day buy the SS when i thought i might get better,

    Fuck me i thought better, that would be a miracle i know some times i can do the imposible but Miricles takes a wee bit longer HA HA.

    Have a good week end

    Al

  • All I can say is.......Thank F**k we have a sense of humour!!....`cos their attitude and ( lack of ) knowledge about Parkinsons is laughable!!

    BTW I feel a PAAARRRTTTAAYYYYYY Comin on!!!! :-D

  • Something is terribly wrong when the Social Security Administration employs people with little knowledge of disabilities to make disability determination. These employees need to be well trained in order to make accurate determinations. Quality of life is at stake for those with significant disabilities and time & money are wasted on multiple appeals and in granting benefits to so many people who are actually ineligible. Talk about government waste, not to mention Medicare fraud. It would surely only cost a fraction of the amount saved to go after beneficiary and provider fraud. Guess it's a lot easier just to reduce SS & Medicare benefits for everyone.

    When I applied for Social Security Disability benefits, I was surprised to discover the inadequacy of the system and incompetence of the staff that provides SSDI determinations.The most shocking experience during the course of my determination was when I got a letter after my first appeal that mentioned my good memory as one reason I could work. I phoned my contact person to tell her there was a mix up with my determination letter. I pointed out that I had mentioned memory problems 13 times in my lengthy appeal application and told her that I did not know one of the doctors whose report they listed as evidence. She responded by saying well that's what the team decided and the appeal process was the only avenue I had available to correct the team's errors!

  • Sadly this is happening all over the western world. A shrinkage of welfare benefits at all levels, and handing over control of such services to private companies who are not interested in human rights. They get paid to keep people like us off the system. All the really good disability benefits advisors with loads of experience have disappeared and the ones that drew describes have taken their place. Even the language is the same and the definition of disability has been redefined.

  • Unfortunately none of us will get a job with Dept. Work & Pensions, the people who assess all our claims. Why would we not be picked? That's easy - we are not insensitive, crass, ignorant, downright rude, offensive, have a rhino hide and a couldn't care less attitude. Amen

  • Ha ha drew - how true and i have it all to come when i get back to blighty - whenever that is !!

  • Hi sha

    How r u?

    I am sow weepy I know I should not be but w r till not able to live in our apartment

    Boxes high to the 12 foot high ceilings - we need to downsize r

  • More than we haves so far

    Loll Jill

  • hi jill - so soory ti hear things arenot progressing as they shoild be - i am 'ok' thanks - not any better yet though - i am on a mission now though to find out why if i have PD i am getting no releiaf from all the drugs ... take care of yourself

    sha x

  • Hi drew

    Yeah funny

    Lol Jill

    :-)

  • Here Here Brother!!

  • I agree with Andy. People do not know enough about Parkinsons (I also never use the word disease). It needs to be given a higher profile. It was recently Parkinsons Awareness Week and I didn't see very much about this either on TV or in the Press. Also, I did not see any collection boxes outside the Supermarkets I use. If only we could get better! Where are these people coming from? In these cases ignorance certainly is not bliss.

  • Hi everybody, Oh, how I agree about the general public's lack of understanding regarding PD. I have been fortunate enough to be asked to speak about it at a few Rotary and church meetings, and because I tend to be a bit nervous they see what Parkinson's can be really like. At the end, they remark on the fact that I must be exhausted by all the shaking and twisting.

    We recently had a visit from a young social service advisor. He admitted to not knowing much about PD and was ready to listen when I explained it to him. To Tom Isaacs remark that it is a "life sentence" I add, "and there is no remission for good behavior."

    I also don't call it a disease since people tend to think of diseases being infectious which PD is not. I call it a syndrome.

    Let's fight on and get people educated.

  • Just wish the DWP (and the UK Govmt) would get their act together. I was "assessed" in February and deemed "unfit" yet my review date , according to the "decision letter" says they won't bother me again until 2015 - which seems very sensible (I know it's hard to believe !!).I have complained to my MP about being treated like a "benefits scrounger" as it feels like we are treated the same as someone , and they do exist , who deliberately defrauds the system with fake claims. Surely these people should be pursued ? It only takes a call to your GP to confirm you have PD - or do they not believe them either ?

    ...............and they rattle on about "cutting costs" and decreasing the "Deficit"

    I feel another letter to my MP coming on......................

    Rant over

    Stay sstrong

    Dave

  • Hi

    I agree with all of the comments above

    I have PSP and b4 i got dxd I applied for DLA ans was turned down as I was said to b in "no danger of falling over "

    (A joke )

    Then when i got dxd I applied again and with the support of my consultant and GP got it

    2 attempts and now they r changing it to PIP next year

    Lol jill

  • I was asked what the end date of my benefits is. I told them the day I'm dead, stupid uneducated burecraps.

  • Wow - I just applied for SSD. Sounds like I have a nightmare ahead me!

  • Sometimes it's not a problem, depending on what your PCP writes on their report and if you help gather up medical records. You may want to get copies of them and send them off yourself. They will get them quicker that way. Keep a copy of everything and carefully complete any needed paperwork quickly.

  • Thank you!

  • Before I was dx with PD, I worked for HM Civil Service (best not say which dept, dont know who reads these posts). I was apparently ok at the job, but as soon as I said PD, that was it;I was treated like a moron. Every mistake in the office was down to me, I was lifted bodily out of the building at a fire drill made to discuss my difficulties in a public place and eventually I got so fed up I left.

  • Cags, I'm not sure whether is relevant but do you fill in your forms as an individual (on your own)? If so try to think like a spy. If the so-called 'support services' treat you like a moron take advantage & use the system. Ask (nicely) for someone from whichever department to visit you at home & help you to fill them in, as you find you can no longer cope due to the effects of your PD.

    If they cannot do this get a rep from Parkinson's UK, CAB, the Princess Royal's Carers Trust, S Services etc or your Pd nurse to work with you & to counter-sign any completed forms or documents. ALWAYS WORK WITH ANOTHER AGENCY. DO NOT SUBMIT FORMS FILLED IN ON YOUR OWN.

    It works for me!!

  • thanks for the excellant advice angie xx

  • Thanks Honeycombe I have got someone else to fill the form in for me and my Doc is doing a report for me. Thanks for your advice x

  • Sound advice; always have help with the forms. I got a welfare benefits adviser to help me and got a result. Now I volunteer one day a week for that organisation, my way of saying "thanks".

  • Hard to smile when your lips are trembling ( with rage as well as tremors!)

  • Thank God our application went so smoothly. Maybe because I am a nurse and mentioned every doctor and symptom I could think of not only those related to hubby's PD. He also has cervical stenosis so i threw his neurosurgeon in as well. Good luck to all of you who are applying. I pray you get the benefits you deserve without the hassle.

    April was Parkinson's Awareness Month in the US. Every news station had segments on DBS and the Fox Foundation ran many public service annoucements. It was even declared by Congress. It is vital to educate everyone about PD. Even as a nurse, my knowledge was limited till he was diagnosed and I started to read up on it.

  • I was lucky in a way, I did get my disability for Parkinson (I never use disease) but I would not be allowed the medical end of it for two yrs?? Why because I had a small retirement 53,000 they said I should buy my meds.So I keep my insurance from when I worked for 21 yrs and pay 670. out of 1229 a month, I was also told I would be reviewed in 6 months I said why, they said Just in case I got better and could return to work, IDIOTS!!

    But I do have 10.00 med copays YEAH. and just had a 175,000.00 DBS surgery which Ins will pay 80% leaving me the 20% to pay

    . All this and people seem to shout at me or expain things slower and closer to my face, I laugh and say I have PD Im not simple or deaf!!

    Oh and one more though(s)t if you have any income while applying for disability there is a one time disallowment where the amount can be waved. This to help with the eligability. I also found out work with a couple places to get this done, keep copies of all paperwork, and document all phone contact, keep good records, even if it is hard to write, find someone to write for you. tell the truth always even if it sounds bad the truth wins out usually.

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