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Newly diagnosed partner

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    Newly diagnosed partner

    Hi everyone. This is such a great place for information, advice and help.

    My partner has recently (2 weeks ago) been diagnosed. We still haven't met his MND Doctor or Nurse. His ability to negotiate the stairs has decreased massively. We need so much help.
    How do we go about looking toward funding for adaptations?
    We put a P.I.P. claim in a couple of months ago (this is obviously pre diagnosis) and got nowhere when we tried to explain the change in circumstances. He's working from home at the moment.

    Do we contact social services ourselves or will the G.P/MND Doc/Nurse do that?

    Was told by the hospital that he should have an appointment with the MND Clinic over the next couple of weeks but his abilities are declining.

    I've emailed MND Connect, awaiting a response.

    Thank you


    Hello. Try to relax. After the official diagnosis they all come to you. Stay Strong. ๐Ÿ’ชโ˜บ๏ธโ˜บ๏ธโ˜บ๏ธx,
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx


      Byron, like Matthew says they will all start to come............we felt that no one knew of us at the begining...............then it became a complete pain people coming everyday or so it seemed!

      Albert's only ever met his MND Nurse once.............that's in 12 months............Covid of course gets the blame, no staff, no transport services, etc, etc

      As for the PIPs I dont know why they did that and I do think there's a "Mandatory Reconsideration" you can do which I think is within 30 days..........check it out,
      Albert got his PIPs award before he was diagnosed and then once he'd been diagnosed they issued a DS1500 which uprated him to full payment,

      The PIP assessment was a long time coming - 7 months as I remember - but they did backdate it to date of claim,

      Everything will be a fog at the moment, I didn't even know who did what, Adaptations, Social Care, wheelchair services, OT, etc will become more clear as you head down this lousy path I fear

      Best wishes

      Husband Albert diagnosed PMA Feb 21


        Hi re pip you need a ds1500 form. Your g.p and mnd nurse can do it. Sounds scary re the 6 months to live bit but its used to get pip through quickly. Your partner can still work and get pip.

        Contact mnd connect and ask for a benefits referral. Its a fab service and they can advise on lots like if your partner stops work etc.

        its a start whilst you are waiting for your appointment x
        Diagnosed May 2021 bulbar onset als.


          Actually Shelly you don't actually need a DS 1500 to get PIPs............Albert got his award before he was even diagnosed, He got the award Jan 20 and wasn't diagnosed until Feb 21, he was awarded top rate mobility and standard rate daily allowance, so he got this for 12 months, then

          in Feb 21, after diagnosis, and the production of the DS1500 he was then able to get his rate uprated to top rate daily allowance
          Husband Albert diagnosed PMA Feb 21


            Byronboi sorry to hear of your partner's diagnosis & welcome to the forum. Look forward to hearing from you both.
            Take care ๐Ÿ‘๐Ÿป
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹


              A warm welcome to the forum Byronboi

              If you don't hear from the MND Clinic this week, chase it up - your partner needs OT input asap.

              Love Ellie xx
              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user



                Sorry you have joined this club of carers.

                A GP can fill out the DS1500 form which fast tracks the PIP (non means tested), this should boost your claim quicker.

                If your partner is officially diagnosed a letter should be sent to the GP too.

                We got a call with 2 questions (do not get stressed about the terminal question, it is for the purpose of fast track)
                and it was back dated to date of application, which should be the original date of your application.

                If you don't work (or a certain amout of hours/pay) you can apply for carers allowance too.
                The MND Association has dedicated staff for benefit questions. They were very helpful. And for other questopns.

                Alert your GP of your situation too, you need support too. I got a weekly wellness coach phone call.

                I would also have a diary for names and contact details of people, it gets confusing.

                The OT was great for discussions on future proofing the environment.

                There is a post code lottery of what happens, it is useful to know what other's experience of professionals are.

                Best wishes

                Carer for husband diagnosed July 2020, MND of Fail Arm Type

                Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


                  My husband also qualified for ESA (Employment Support Allowance) on top of PIP and it is also non means tested and for people of working age. He had his DS1500 so the claim was fast tracked and dealt with in around a week. ยฃ114 (i think!) per week. This is for people who are working.

                  I don't qualify for carers allowance so this was a bonus that i had never heard of before. Not many perks in this club!!!!
                  Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                  Sense of humour intact throughout.

                  Sadly passed away peacefully 2/9/22