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    This is outrageous TJ and it makes my blood boil. Yet again we have a system that would appear to be either a postcode lottery or based on the sympathies, or not in your case, of the medical profession. People diagnosed with MND should not have to appear in front of a panel of private contractors appointed by the government i.e. working for profit and no doubt judged by results (how much they can save the DWP).
    I agree that the benefits system is floored and needs a revamp but those with terminal illnesses should be exempt.

    Rant over.

    I wish you success with the assessment.

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


      TJ, agree with Barry that this is outrageous. Your neurologist or palliative care specialist may be prepared to fill in the ******* form.


        I couldn't get Dad's GP to do a DS1500 either. I asked back in June one month after he was diagnosed. Finally in the December the palliative care consultant from the Hospice agreed to do one.

        It makes me so cross as back in June the GP said 'I can't do the form as he's got years yet', 8 months later he was dead. We could have had additional financial help for those 8 months rather than just the 6 weeks before he died.


          My dad was diagnosed with bulba MND is August I completed PIP forms and sent off with DS1500 forms and dad got his payments through very quickly, about month to 6 weeks. He sadly died in January but at the time of form filling we didn't know it would be that quick. I just phone the GP for one (ds1500) and picked it up the next day. Do it who cares if you live longer than 6 months I think they should be issued routinely for all with MND it bad enough without added hassle of PIP or any other forms!


            Hi Henrietta

            Totally agree ds1500 should be routinely given to all MND suffers. I am going to phone our dr tomorrow to see what response I get and if I get no joy will speak to Roberts consultant at the end of the month .


              Hi all


              Phoned and spoke to our GP this morning about DS1500. He asked me if I understood why a DS1500 was issued and I said yes I fully understood. After a short discussion, explaining how much more Robert had deteriorated he agreed to leave a completed form for me at the reception desk which I picked up and posted along with a copy of a letter from his neurologist stating that Robert had MND. I also spoke to the PIP dept who asked a few questions . They then said that we should hear from them in 3weeks.

              Watch this space.

              Lyn lilylou


                Hi Lyn,
                That's good news! Once you get that through you can apply for carers allowance which should be back dated to application date for pip! Hope you get it through quickly. Keep phoning if you don't hear!
                Henrietta xx


                  Well I have been'medically assessed' and we now have someone at DWP calling me once a week with an update... Watch this space...


                    Hi all

                    Well 3 wks is up nxt week and so will start phoning the pip dept next Tuesday and then every other day until I get something back from them.

                    I lay in bed thinking wouldn't be wonderful if when someone was diagnosed with this rubbish disease they were automatically sent out someone to discuss benefits etc. so that we didn't have to fight for it.

                    A very fed up lilylou


                      Lilylou that is an excellent idea. Most local authorities hAve a benefits office but I understand they are grossly understaffed. The MNDA publish excellent advice sheets but, even when you read and understand them, you can cone a cropper. Benefits and work web site is vety good on DLA , PIP and ESA but your idea of a personal interview with an expert is excellent. Would MNDA help secure this?


                        Hi magic

                        Do you think they would . Would it be worth a phone call to them. Perhaps we should all phone them. Perhaps we should speak yo our MP's. Ooh I might be getting carried away here.



                          Hi all well after takin time off work to get benefits advice from citizens advice I went to my locsl one only to find out that you csn only get advice from where the person you need advice for pays council tax to so drove 17 miles to near where my dad lives only to be told they only deal with housing benefits on that day so day off work totslly wasted eventually got a phone call from citizens advice to be told dad can only claim ESA and wait for PIP to come through, but I didnt know there are 2 types of ESA which I was told by someone from socisl services, Which after a few phone calls dad is autuslly on the lowest one so I have appealed and sent a letter today with diagnosis on it and saying I feel an assessment isnt required as all information is on letter from consultant.

                          also got DC1500 sent off today so my dad will hopefully have the money he is entitled to, its honestly like getting blood out of a stone

                          was just wondering can you claim ESA and PIP at same time ?

                          Jennie x


                            My partner rang the PIP people today. We were asked if I was terminally ill? I'm still technically working and not in a wheelchair. I am also just under two weeks from my Neurologist's appt confirming MND. For these reasons I said 'no' thinking that I can always go back to obtaining a DS1500 when the diagnoses is confirmed.

                            The CAB site say applying under 'Special Rules' requires more questions over the phone, PIP form filling and a DS1500. I am wondering if I was wrong to decline the option of 'terminal illness', but I can't help feeling it's too early right now to say I am. Is it possibly still a bit too early to apply? Possibly I can get the basic form in and 'top it up' with a DS1500 if, and when, matters take a dive?


                              In my area there is a man employed by Tenovous(cancer charity) to go round day centres giving advice on benefits, what you are entitled to, and help with filling in forms.
                              In my day centre all the other people have some kind of cancer, I am the one with MND. I asked him one day to help me fill in a form and he told me because he works for a cancer charity he could,t help me. Apparently I am dying from the wrong disease



                                Hi Jock
                                I hope you do not need this when you visit the Neurologist.
                                If you do phone the PIP afterwards, it will be backdated to the phone call. The Neurologist should fill in the DS1500 and send it in. No more forms.
                                Best wishes