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Help us persuade the Government to #Scrap6Months!

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    He's a 'jobsworth' indeed. As Barry states he has no conception of what an MND diagnosis means to people. Nor does he get how important it is for those with an MND diagnosis to have as much quality time with families as they can manage in whatever time is left for them, and not waste time and suffer stress about benefits entitlement. I feel like putting a political comment but I'm fighting it. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.


      Interestingly, it seems that MPs are replying with a standard letter prepared by the government. I received the letter below from Dominic Rabb MP when I sent him the MNDA letter.

      Dear Ann,

      Thank you for contacting me about the special rules for terminal illness (SRTI). I appreciate your concerns.

      As you may 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 the government does not believe there is no need for further legislative change.

      Unfortunately, due to pre-existing diary commitments, I am unable to attend the MND meeting on 13 November.

      Thank you again for taking the time to contact me on this important issue.

      Yours sincerely,



        Thank you for kindly sharing that letter with us Ann.

        It just goes to show how the Government and certain MPs really don't understand or care about the harsh reality of life faced by people with terminal illnesses. They can't even be bothered to vary the words of the standard response.They are able to easily dismiss the issue and give it their minimal attention by quickly using the standard letter. It adds insult to injury really and is very disheartening. Sadly, it makes me seriously doubt if the 6 month rule will be scrapped in the foreseeable future.

        Despite their poor attitude and their lack of support for us, they cannot and will not stop us from bravely supporting each other this forum - we all share a special bond that they can't break!

        Kayleigh xx
        Last edited by Kayleigh; 2 January 2019, 21:06.


          I also received a letter from my MP, Andrea Leadsom, which if not identical, was very similar. I forwarded it to the campaigns team at MNDA and it would be interesting to know from the team, how many of our MPs churn out these template responses.


            Vote on this has been put back until January



              Hi - my husband was on PIP higher rate for daily living and lower rate for mobility. He was also on ESA and waiting for an assessment to see which group he would go in. Our MND specialist nurse in London sent off the DS1500 to fast track his benefits. He got approved for higher rate for PIP and also ESA - he got his benefits backtracked to when he first applied so got a lump sum of a few hundred pounds and all assessments were cancelled. The MND specialist nurses are brilliant.


                Hi Devonmaid,

                It's good to hear that your husband was fast-tracked for his benefits, and that his MND specialist nurse kindly helped with the application.

                Unfortunately, not all GPs, MND nurses etc are flexible with their interpretation of the '6 month rule' regarding the fast-tracking of benefits.

                However, it is heart-warming to hear that your husband's MND specialist nurse is so caring and helpful. Thank you for sharing your experience with us, because other people making a benefits claim, might not have been aware that their MND specialist nurse could possibly them with their application.

                I hope that your husband is as well as can be expected. Hopefully, you are both getting all the support you need to make your lives as happy as possible.

                Very best wishes to you and your husband,
                Kayleigh x