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    Experiences of applying for welfare benefits

    If you are living with MND, or know someone who is, and has experience of applying for welfare benefits, we need to hear from you!

    Please share your story at https://bit.ly/benefitsexperience

    Benefits can help those struggling to cope with the financial costs of living with MND. However the benefits system is too complex and often too slow to respond. We are concerned that the Covid-19 pandemic is likely to have a financial impact on many people with MND and their families, making it even more difficult to make ends meet. Therefore, it is vital that urgent action is taken to make sure the benefits system can respond quickly and sensitively to all people with MND and other terminal illnesses.

    Please share your experience of applying for benefits and help us campaign to ensure the Government improves the benefits system for people with MND and other terminal illnesses.
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Hi

    My husband (with MND) and I will start applying for benefits with the MND nurse on Friday 14th August, PIP and housing benefit etc. We privately rent so want to move to more accessable housing (read the housing summary) Is there a particular area other than time that the association is interested in?

    Thanks

    Donna

    Comment


      #3
      Hi

      My husband was diagnosed in Oct 2017. I applied for attendance allowance straight away and were granted the higher rate due to my husband having to use NIV breathing machine at night. We have a fab Occupational therapist who arranged for a stairlift for us. We also got some money towards a shower enclosure from the mnd via our Occupational therapist. We feel well supported.

      Comment


        #4
        Hi Piglet

        Thanks for your information.

        Comment


          #5
          Hi Donna

          Thank you for sharing on the forum. We would love to get in touch to chat to you about your experiences so far. Please could you email [email protected] with your email address/phone number and Joe from our Policy & Campaigns Team will be in touch.

          We look forward to hearing from you.
          Our working hours are Monday to Friday 8:30am until 5pm

          Comment


            #6
            as far as i can make out the only thing my husband can claim is attendance allowance. because he has reached retirment age (70) then no pip. no mobility allowance. he has his state pension and two small pensions. our property (belongs to our son) isnt suitable but wheelchair accessible accommodation is extremely limited and not suitable. we have savings but not enough to buy but enough to muck up our chances of claiming any other kind of benefit. as yet we have received no benefits, its in the pipeline. i can not apply for carers allowance until he gets his attendance allowance and once my retirement age comes about in december i will not receive that because i will then get my state pension but feel it will be based on 30 years rather than 35. but then they took away my pension being a woman born in the '50's. i find the whole benefit saga very confusing and the fact my husband has no right to any form of moblity benefit an absolute joke. i will have to buy a car which will help us get out and about for a while until i cant get him down the stairs or out of the car. i dont think i will be able to get a wheelchair in and out of the vehicle for very long having hurt myself trying to get him off the floor. i need a car it will help me get us both to the GP surgery, chemist, anywhere really. it means i can go out and get back without leaving him for too long.

            because we are late joining because stephen was diagnosed 2 years ago in portugal and being stuck abroad due to the pandemic. We will have a long wait for any kind of bathroom help etc so looks like we will have to pay for that too. perhaps we shouldnt expect any help at all, stephen paid into the system all his working life, but attendance allowance! i have to say makes my husband sound old and frail and needing help but only for age related not due to the fact that this dreadful disease has gradually taken away his hands, arms and possibily his mind. it seems time and time again we reach retirement age and we are at the end of the list of needing help but add retirement age and illness and you can pretty much forget it.

            as you can tell i am not happy.

            Comment


              #7
              Hi. I get max PIP and around a thousand a month from Universal Credit. I got PIP with one phone call, max
              UC with one meeting. DS1500 essential.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                yes you can but not if you are retired.

                Comment


                  #9
                  Originally posted by denise View Post
                  as far as i can make out the only thing my husband can claim is attendance allowance. because he has reached retirment age (70) then no pip. no mobility allowance. he has his state pension and two small pensions. our property (belongs to our son) isnt suitable but wheelchair accessible accommodation is extremely limited and not suitable. we have savings but not enough to buy but enough to muck up our chances of claiming any other kind of benefit. as yet we have received no benefits, its in the pipeline. i can not apply for carers allowance until he gets his attendance allowance and once my retirement age comes about in december i will not receive that because i will then get my state pension but feel it will be based on 30 years rather than 35. but then they took away my pension being a woman born in the '50's. i find the whole benefit saga very confusing and the fact my husband has no right to any form of moblity benefit an absolute joke. i will have to buy a car which will help us get out and about for a while until i cant get him down the stairs or out of the car. i dont think i will be able to get a wheelchair in and out of the vehicle for very long having hurt myself trying to get him off the floor. i need a car it will help me get us both to the GP surgery, chemist, anywhere really. it means i can go out and get back without leaving him for too long.

                  because we are late joining because stephen was diagnosed 2 years ago in portugal and being stuck abroad due to the pandemic. We will have a long wait for any kind of bathroom help etc so looks like we will have to pay for that too. perhaps we shouldnt expect any help at all, stephen paid into the system all his working life, but attendance allowance! i have to say makes my husband sound old and frail and needing help but only for age related not due to the fact that this dreadful disease has gradually taken away his hands, arms and possibily his mind. it seems time and time again we reach retirement age and we are at the end of the list of needing help but add retirement age and illness and you can pretty much forget it.

                  as you can tell i am not happy.
                  Hi Denise,

                  We are very sorry to read about all of this.

                  Have you contacted our Benefits advice service? You can call them for free on 0808 801 0620 (9am till 5pm Monday to Friday) and they will help you identify the benefits you may be able to claim and work out the best way of claiming them. They can also deal with complex benefits issues on your behalf and appeal against decisions.

                  More information can be found on our website https://www.mndassociation.org/suppo...nefits-advice/

                  Many thanks,

                  Forum Admin
                  Our working hours are Monday to Friday 8:30am until 5pm

                  Comment


                    #10
                    PIPs information that may be of use? - Albert was awarded standard rate Daily allowance with Enhanced rate mobility last year sometime, before he was actually diagnosed, he got the award before his state pension age,

                    So I decided to ask Seacroft if he should have a DS1500 as he has by now been diagnosed (February of this year) and straight away they sent him one - so I was a bit miffed at having to ask - surely they should have just supplied it?

                    Anyhow 6 months later I sent the form off to DWP as "A change of Circumstance" and asked if this would now qualify him for "Enhanced" daily allowance,
                    it took slightly longer than 10 working days BUT yes he has now qualified and they backdated him the difference to February,

                    but another plus is

                    He is still on a 10 year review and not 3 years .............I had been told that a change or circumstance brought the review down to 3 years - this is not the case, and his letter clearly states it will be 10 years from now (2031) for the review - so they didn't use his previously qualified date of last year,

                    Another plus is now I learn that when you have a DS1500 the money is paid weekly in advance and not every 4 weeks in arrears which is how it had been previously paid.

                    For the cost of a stamp and a letter he now gets best part of 30 quid a week extra - so I see that as another plus

                    Sue
                    Husband Albert diagnosed PMA Feb 21

                    Comment


                      #11
                      Well done getting benefits sorted.
                      Best shes
                      Mary

                      Comment

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