Tell us about your experience of claiming benefits

The Disability Benefits Consortium (DBC) is a national coalition of over 80 different charities committed to working towards a fair benefits system for disabled people and their families.

We know that disabled people often struggle to get the financial support they need. We want to hear from you so we can find out what is and isn’t working well. We have put together an survey which asks you about your experiences of claiming disability benefits. Your responses will be kept anonymous, but you can offer to be contacted further about your experience.

Take the 2017 Big Benefits Survey here

The evidence you provide helps us to campaign for a fairer benefits system for disabled people. Anyone who has supported you to apply for these benefits is welcome to fill it in of your behalf.

In previous years, over a thousand people completed our Big Benefits Survey, and the evidence we got has helped us to tell the Government about the impact of benefit changes on disabled people.

If you have any problems accessing the survey or any feedback on the questions asked, please email Phil on preynolds [at] parkinsons.org.uk (replacing [at] with the @ sign).

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14 thoughts on “Tell us about your experience of claiming benefits

  1. I suffer with mental health issues and am on medication and therapy, it effects my life in a way mist people wont understand and is not always visible. Ivehad my esa stopped and after appeal was told there is nothing wrong with me and im ineligible for esa. I have been treated appallingly by the dwp and believe mental health should be treated fairly instead of being an invisible illness that because the government tends to ignore it so does everyone else, which in turn makes the sufferer feel even worse and more hopeless than ever.

    • I fully understand how you must be feeling.I suffer badly with epilepsy, depression and Anxiety amongst other ailments too.I went for a PIP assessment with my husband, I broke down in tears before I even entered the room.And yet now on the 4th March I have found out that the Atos women has lied in my report.And took my DLA from me as from 29th March, and was refused Pip too.it’s affected my depression and epilepsy even more now,I feel like I have nothing to live for.love Anne-Marie x

    • according to my report from atos and dwp people like you cannot have a mental health problem because your able to reed and write that cost me pionts

  2. I am 64 years old. I am about to recieve my old age pension, Aug 23rd. I recieve DLA at the highest rate for help with personal care and help with mobility. I am very worried that when I go for assessment for PIP I will lose my mobility component. I rely on my scooter for getting out of the flat for shopping, visiting family and any other social activity that keeps me engaged with society. So, I wait and see.

    • Vanda Short on May 2016 at 20.25pm
      i claim PIP and have just had an assessment, I was receiving Enhanced rate of mobility and have a mobility car, have just been told they have reduced me to satandard level. I now stand to potentially loose my car because it is deemed I have the knowledge of my area locally and can plan a journey.

  3. I perhaps think the government who will no doubt cut many peoples benefits hope we shall all die off as quickly as possible.

  4. I retired at 60 before I was diagnosed with Parkinson’s shortly afterwards which came as a shock. Although I do not claim any benefits, I am increasingly concerned about the manner in which support is provided to those with Parkinson’s . And fear for the implementation of the integrated Health and Social Act given the quality and access issues related to care.

  5. My mum was diagnosed with Parkinson’s not too long after retiring as well in her 60’s and I fear for her future independence. Having a disability is expensive and is it right that her hard earned savings to enjoy will go solely on her care and only will support her for a short time. I fear for those who have to go through the process of applying for benefits. I supported my mum to apply to the DLA, she wasn’t going to bother as was worried about the process and people calling to assess her. It was a 50 page document asking the most in depth of questions relating to mileage you can walk, which if you know anything at all about the condition can be different at any given day/time and with such a narrow window of opportunity for any kind of activity. These are individuals who are in pain and when every day is a struggle, it worries me that these individuals are seen as problems to society. The lack of community based care available is indicative of that opinion. Thanks goodness for charities who offer expertise, a comforting support to carers and families and an emergency response when acute care can’t support. I dread having to now go through PIPs potentially and loose what we fought to get for her.

  6. I’ve only a few words too add too this not possible I relay 7 years off hell in this shambolic system that fails so many in particular when simpler methods could be applied! I don’t believe I deserved what I got! If I did after 7 years pherhaps somebody might explain!

  7. I suffer very badly with epilepsy and depression aswell as Anxiety too,my epilepsy was brought on by a brain haemorrhage I had when I was a baby.I was on DLA indefinitely middle rate,but afew years ago they even took my blue badge off me.Even though most days I suffer seizures or petit mal, but what has hurt me more than ever now.And also made my health far worse too,is that I finally had to go through filling the Pip form in with my husband, And the day of the Assessment I was a bag of nerves and started crying before I even entered into the room with the Atos women. It was a very very hard assessment to go through, I explained all my health problems to her.And my husband held my hand throughout, and told her how bad my epilepsy is and that he has to constantly care for me.It’s been a long and stressful wait for my results back.However I got my letter back from them on the 4th March, and they have stopped my DLA as from 29th March. And only scored me 2 points 😢.The Atos women who assessed me has lied on her final report, and it’s killing me now what they have done to me.My depression is now far worse,right now I don’t feel like life is worth living. Plus my epilepsy too has got worse,why do they do this to the people that are truly disabled in life?it’s so wrong.x

  8. Pingback: Survey: Moving from DLA to PIP - Cyngor ar Bopeth Ceredigion Citizens Advice

  9. I know I am in difficulties, since last November 2015, I have been seriously ill with Parkinson’s Disease, having worked all my life since 1975. I applied for ESA and was placed in the work group. I couldn’t walk or talk, just shake and cry inside. The jobcentre plus staff were very unhelpful, my sick notes were no longer scanned and sent to the DWP, I had to post them. I had a work capability assessment I sent in 24 pages of more medical evidence and a record of events, how my treatment was affecting me, my incontinence, having to crawl upstairs to use the toilet.
    They phoned me on the day of the assessment to cancel, and stopped my esa, I went to the jobcentre and asked why? they looked blank, I explained I have parkinsons and I need help, they don’t care. I went mad and sent my medical documents and everything I had to the DWP and asked to be move to the support group, they haven’t been in touch…as usual, they just hope you go away, next week I am off to see my MP.I paid my way all my life i need help now, not later.

  10. from dla to pips your more likelly to win the lotto than get your money right??.There still takeing off the pionts SO YOU LOOSE OUT EVERN with a chronic illness

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