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Scrap 6 Months

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    Scrap 6 Months

    Hello everyone,

    Below are a few updates from the Campaigns team on Scrap 6 Months.

    New Video
    We’re proud to be launching Jack and Rose’s story, a video showing why our Scrap 6 Months campaign is so important for people with MND and their families. Over 11,000 people have signed the Scrap 6 Months petition so far, we’d like to thank everyone who has signed and asked others to sign too. Please sign the petition calling on the Government to Scrap 6 Months and make benefits more accessible for people with MND and other terminal illnesses.

    Personal Stories
    We are looking for people who have had trouble when trying to apply for benefits such as Personal Independence Payment (PIP), Attendance Allowance (AA), Disability Living Allowance (DLA), Employment and Support Allowance (ESA), and Universal Credit (UC) under the Special Rules for terminal illness fast-track process (DS1500 form). If you’d be willing for your experiences to be used in our campaigning work – the campaigns team would love to hear from you, please email [email protected] to be involved.

    The All-Party Parliamentary Group (APPG) on Terminal Illness has launched an inquiry into people’s views of the 6-month definition of a terminal illness. You can submit your view via this website. The deadline for submission is 17 May 2019. Please consider sharing your views – it would be great to get as many voices of people affected by MND heard by the inquiry as possible.

    If you are having difficulties accessing benefits, you can contact our benefits advice service by phone, email or webchat for support.

    That's all for now, thank you to everyone for all your support.
    Our working hours are Monday to Friday 8:30am until 5pm

    Just to let you all know that this is another thing to help others like us.

    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.


      I contacted the Mnd line about universal credit. I was told I would receive a call back and did about a week or so later whilst at work. The guy gave me some info but i didnt have a pen. he took my email to email me but i never received anything so i emailed early dec but i never received a reply��


        Hi Shrew,

        We're really sorry to hear about this, and the team would like to get in touch with you to follow this up. If you could please email your contact details to [email protected]. Alternatively, if you would like to send us a private message with your contact details we'll make sure someone gets in touch.

        Thank you,

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


          Can you tell me why a GP or Consultant or other specialist can't just sign a DS1500? The rules are quite straight forward but not rigorous. DS1500 raises the awareness of a patient that may not live for more than 6 months - but as the government guidelines state - it is not an exact science and no one is penalised if the patient continues beyond 6 moths. In fact 3 years are allowed before another DS1500 is required.

          So what is the issue? Just get a specialist to sign up.


            This seems to really depend on where you live.

            My MND nurse came to see us at home a few days after I had been diagnosed. She suggested and signed a DS1500 for me but it was sensitivity explained : it doesn't mean you have 6 months to live and you dont have to have interviews and any benefits should be fast tracked. We spoke to an excellent benefits advisor from the MNDA too. It really helped as I was too young to get my teacher's pension.

            I would have thought anyone diagnosed with MND should have this.

            Love Debbie


              Hi Debbie,

              Excellent result.

              As for postcode dependent - my view is that many medical staff are not benefits advisors or indeed are aware of the benefits system - and so it appears that if you ask them for DS1500 they don't really know what it impacts.

              I asked 3 professionals:

              1. My GP - he would sign quite happily

              2. My Rehab consultant - she filled it in immediately

              3. My neurologist who diagnosed me - he was happy to fill it in too.

              As you pointed out - an MND nurse can do it too.

              So lots of options. Importantly there is no comeback on anyone if you live longer than 6 months - you actually get 3 years before you have to submit another DS 1500.

              DWP will send a letter after receipt of DS 1500 - telling you what they will do - in my case a review in 2028.

              Hope the shelps