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Help us persuade the Government to #Scrap6Months!

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    Help us persuade the Government to #Scrap6Months!

    We would like to hear from people who have tried to apply for benefits under the Special Rules for Terminal Illness (the fast-track process for claiming benefits), and what your experience was of the process. If you applied for benefits under the normal process but feel that using the Special Rules process would have been beneficial, we’d also like to hear from you.

    Email [email protected] and tell us your story. Find out more about our Scrap 6 Months campaign here: www.mndassociation.org/scrap6months

    The Campaigns Team

    #2
    Hi Team,
    I applied for PIP 9 weeks ago. At the time I didn't know about the special rules. I did ask them how I could speed things up as I had a 'terminal illness'. The lady was really unhelpful and said I had to wait for the assessment after 8 weeks. When I pushed her again, she asked me what MND was and again said I needed to wait for the assessment.
    I waited 9 weeks and then discovered the 'rules'.I rang back and explained this. The new lady was incredibly helpful and told me what to ask my GP and about the form for him to complete. She said many of the Pip call centre staff do not know about any other 'terminal illnesses' other than cancer.
    I called my GP who was not too comfortable about signing the form as the '6 month bit' was not really relevant.
    I bravely assured him it would be fine so he did as I asked him!
    Hopefully, I will be in receipt of it very soon.
    Have to say the initial PIP conversation was incredibly insensitive, incorrect and in my opinion rude. (Made me cry in frustration!)
    Hope this is useful,
    Marigold

    Comment


      #3
      Hi team.
      My wife was diagnosed last October, we were told about the DS1500 form by the MNDA advice line, inform the doctors, he signed it and we got pip at the enhanced rate within two weeks of the form being received by the DWP.
      Tim and Mary

      Comment


        #4
        Almost the same here but diagnosed in November when I was still a driving instructor and couldn't manage doing that any longer by January this year. So then applied for PIP with my specialist nurses input and shortly after that I applied for ESA. I got the enhanced rate of PIP and the support type of ESA so no getting called in for interviews.
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
        I'm staying positive and taking each day as it comes.

        Comment


          #5
          Lynne:

          What is ESA?

          Charles

          Comment


            #6
            Hi njm,
            ESA is employment and support allowance, which I forgot to add on my previous post, and as Lynne stated no being called in for interviews and assessments, and no having to forward doctors sick notes.
            Tim and Mary.

            Comment


              #7
              Tinm:
              Who is eligible?
              Where do you apply.
              I have PIP.
              I stopped work April 2018.

              Charles

              Comment


                #8
                Hi Charles,

                I Stopped work in Sept 2017 .When I was diagnosed the MND nurse advised me to apply for ESA .Apparently it can be backdated for 3 months. If you have the higher rate of PIPS you are entitled to the higher rate of ES A, if you have enough national insurance contributions .

                Before I had an official diagnosis I applied for PIPS and after an interview , was turned down because they said I could walk ( I really couldn't ) and was cheerful !!! MND was suspected so we asked for a review and eventually it was settled in court in our favour. I was just so cross because they thought I was putting it on ... I wish.

                After diagnosis I got the DS 1500 , which I think means no more interviews or forms to fill in. I spoke to a brilliant benefits adviser from the MNDA .

                Hope this is of some help .. I am no expert.
                Love Debbie x
                Last edited by Deb; 14 September 2018, 14:00. Reason: Wrong date

                Comment


                  #9
                  ESA is Employment Support Allowance. There's 2 options. One you have to go to interviews about getting a job and tell them what you are doing to get a job. The other option is the support group and with this there are no interviews. This is the one that I was put in.
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                  I'm staying positive and taking each day as it comes.

                  Comment


                    #10
                    Charles, I googled the number to dial for ESA new claims: 0800 055 6688 They ask questions and then send you a form to sign. You'll need to put a doctors sick note in and a letter confirming your diagnosis, if my memory serves me. Good luck. Lynne
                    Last edited by Lynne K; 14 September 2018, 15:59.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Hi Charles,
                      when my wife got pip, she also got ESA, after a lot of questions on the phone with the DWP, as has been said, it depends on contributions and if under retirement age If I remember correctly, hope this helps.
                      Tim and Mary

                      Comment


                        #12
                        Hello there,

                        I've sent this to my MP- as I'm not a big FB user or tweeter
                        I've taken the info from the campaign

                        Plese feel free to copy and tweak and send it is as necessary

                        Find our you MP https://www.parliament.uk/mps-lords-and-offices/mps/


                        Dear XXXXX MP

                        People who are terminally ill but who have more than six months to live are being excluded from the Special Rules for Terminal Illness fast track process for accessing welfare benefits.

                        The Special Rules process requires a ‘reasonable expectation of death within 6 months’.

                        This means that people who are terminally ill but who have more than six months to live could be required to fill in a long form, attend a face-to-face assessment and discuss their work aspirations with a work coach to qualify for benefits. This simply isn’t right.
                        #Scrap6Months

                        Madeleine Moon MP has tabled a Private Members’ Bill – the Access to Welfare (Terminal Illness Definition) Bill – which has its second reading on 23 November 2018. The Bill proposes to remove the arbitrary six-month definition of a terminal illness ( as is the cas in Scotland )and replace it with the clinical judgement of a medical practitioner. This would enable everyone with a terminal illness to access the benefits they are entitled to quickly and sensitively.

                        I would be greatful if you could considered this and lend your support to the Bill and add your name to Madeleine Moon MP’s backbench letter.

                        https://www.madeleinemoonmp.com/wp-c...h-Letter-1.pdf

                        I look forward to hearing from you soon

                        Comment


                          #13
                          Hi Jaffabeach,

                          Many doctors and specialists will complete the necessary form saying that you could die within six months.

                          Love Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #14
                            Originally posted by Admin_MND View Post
                            We would like to hear from people who have tried to apply for benefits under the Special Rules for Terminal Illness (the fast-track process for claiming benefits), and what your experience was of the process. If you applied for benefits under the normal process but feel that using the Special Rules process would have been beneficial, we’d also like to hear from you.

                            Email [email protected] and tell us your story. Find out more about our Scrap 6 Months campaign here: www.mndassociation.org/scrap6months

                            The Campaigns Team


                            No support for SCRAP 6 months from Conservative MP Dr Andrew Murrison
                            MP for South West Wiltshire


                            Thank you for contacting me about the special rules for terminal illness (SRTI).

                            I appreciate your concerns. It is crucial that people who have a terminal illness should receive support when they need it and with the minimum of stress. That is why I support a benefits system which reduces stress and anxiety for people with terminal illnesses.

                            As you will know, the rules for terminal illness were put in place to provide important support to people who have only a short time to live. This is achieved through guaranteed entitlement to certain disability benefits, with claims dealt with in a fast and sensitive way, and without the need for a face-to-face assessment.

                            The policy of a six-month timescale enables the benefits to focus support on individuals in the most severe circumstances where there is greater certainty around their prognosis. However, the six-month rule should be determined by whether there is a ‘reasonable’ expectation of how long someone is expected to live. This approach means, for example, that around two thirds of the PIP caseload who are terminally ill have been receiving benefit for six months or more.

                            People with a terminal illness who are expected to live significantly longer than six months are able to claim benefits in the usual way. Everyone with a terminal illness prognosis should be treated with the utmost sensitivity and care which is why staff involved throughout the benefits process receive training on how best to handle claimants in this difficult situation.

                            It is for these reasons that I believe there is no need for further legislative change and I hope this letter reassures you of the safeguards in place for people with terminal conditions.

                            I am grateful to you for taking the time to contact me.

                            Best regards

                            Dr Andrew Murrison
                            MP for South West Wiltshire
                            Prime Minister's Special Representative for the Centenary of the Great War

                            Comment


                              #15
                              Hi Jaffabeach,

                              Thanks for sharing this reply from your MP. Clearly he has no experience of MND and is hiding behind the “party” line. My MP, also a Tory, writes platitudes when I contact him about campaigns for MNDA.

                              Barry
                              I’m going to do this even if it kills me!

                              Comment

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