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    My 40 year old partner was diagnosed with MND four weeks ago.
    We have had fantastic support from the neurologists at Addenbrooks and the team at Arthur Rank Hospice.
    But I feel quite alone, We have a 1 year old daughter, we have just bought our first house and I’m worried how we will afford everything once my partner gives up work. I have spoken to the benefits agency and I earn too much to get any help!! I work in retail so I’m not earning a fortune!! We have income protection but that only covers 1/2 our monthly mortgage payment .. any help or advice would be appreciated

    Hi Emma and welcome to the forum.

    Sorry to hear of your predicament and your partners recent diagnosis.

    The Mnda do have a person that is well up on that sort of thing, so I would give Mnda Connect a ring and see what they say first.

    Please feel free to ask any questions or share things with us.

    Best wishes, 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.


      Hi Emma and welcome.

      Sorry to hear that your partner has been diagnosed with this dreadful disease and please let him know that he will get a warm welcome should he feel like introducing himself.

      As Terry mentioned, MNDA have a specialist on the subject of benefits so they will answer your questions if you call on Monday.

      I appreciate it is early in the diagnosis and your head will be all over the place but here are a few of the things I have learned.
      Contact your council and ask about the reduction in council tax which normally means that people with disabilities who may need to adjust their home, move down a band in the rating.
      Any equipment that is sourced privately should be vat free, including alterations to your home.

      No doubt you will have other questions to pose over time and you can be sure that our forum family will answer.

      Best wishes to you and your partner.

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


        Hi Emma,gzghb

        Welcome to the forum no-one wants to need. Sorry to hear that your partner has been diagnosed. It's perfectly understandable that you are so worried - there are so many things that probably seem insurmountable at the moment. Try to take things just one step at a time.

        A good tip for when you are trying to find answers is to keep good notes: who you were speaking to, what you asked, what you were told and the contact details. It's a good idea to have a notebook that you use just for things to do with MND and issues around it.

        Trying to keep positive, but not always managing.


          Hi Emma and a warm welcome to the forum nobody wants to join.

          Sorry about your partner's diagnosis - it's a bombshell diagnosis.

          Good to hear you're both getting support. I wonder if the hospice can give advice on finances? Most have a social worker, or at least someone who is well up on benefits etc.

          Look after yourself too!!

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


            Hi Emma,

            A warm welcome to the forum.

            Sorry about your partner's diagnosis. Understandably there is a lot for you both and your family to come to terms with. Please don't hesitate to ask us and the MNDA for information and advice, as often as you would like to. In addition to the MND Connect helpline, the MNDA offers support from their local Advisers and at its local Branch meetings - further information can be found on the MNDA'S helpline webpage:-


            I'm not an expert about benefits but your partner might be able to make a claim for PIP (it is not means tested). Further information about Personal Independence Payment (PIP) and other benefits can be found on the MNDA's webpage 'Benefits and Financial Support' (the webpage also includes information about the MNDA's Benefits Advice Service):-


            Love and best wishes,
            Kayleigh x
            Last edited by Kayleigh; 7 September 2019, 13:19.


              Hi everyone and thanks for making me feel welcome. Thanks for all your advice. We have claimed for PIP already and we have been referred to social services as our house is not very accessible so hopefully they will be able to give us some support in getting that sorted.
              I just worry about losing our house that we worked so hard to get in the first place! I feel so angry that we have been dealt this card we had our whole life in front of us with our little girl and now BOOM!! Trying to remain positive but it’s bloody hard and extremely heartbreaking.
              I spoke to the council and they will reduce our council tax by a whopping £6 per month!! And I can’t get universal credit to help with childcare because I earn to much a month!! I’ve paid national insurance for 21 years and all I will get is £82 child benefit and not even a carers allowance!! All seems very unfair!!


                Emma, just a thought....

                Are you sure you don't have some Mortgage Protection / Terminal Illness cover linked to the mortgage or life insurance policy? Worth checking.

                And in the future, if you think you'll default on your mortgage, it's much better to approach your mortgage provider really early on, rather than having the whole thing snowball on you.

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                  Hi EmmaJ

                  So sorry to hear of the diagnosis. I am the wife. It is quite a shock and best to plan ahead as much as you are able, is one piece of advice I would give as we seem to always be in crisis management mode - mainly due to hubby not wanting to face up to his needs.

                  Straight after diagnosis we were advised to apply for attendance allowance, which is not means tested like carers allowance. The form is very long and we had help with filling it in, but as we had a letter from the Neurologist with the diagnosis, hubby managed to get the higher amount.

                  It might help you financially and take away a little of the worry. Every bit to take away some worry is good.

                  Oh, and check the mortgage - it is very likely you will have a clause in there for diagnosis for terminal disease, which unfortunately MND is. Could mean the mortgage being paid off, fingers crossed.

                  With love,
                  Last edited by Wailywoo; 9 September 2019, 10:30. Reason: Missed a bit
                  Never take tomorrow for granted!


                    Correct me if I am wrong but I think attendance allow is just for over 65S ?


                      I think you are correct Shrew. If a person hasn't reached State Pension Age then they can make a claim for PIP instead (and I understand from reading Emma's latest post, her partner has already submitted a claim for PIP).

                      Just in case anyone on the forum wants further details about Attendance Allowance or PIP, I have posted links to the relevant information on the website, below:-

                      Attendance Allowance (state pension age and above):-


                      How to check what your state pension age is:-

                      Work out your State Pension age and Pension Credit qualifying age

                      Personal Independence Payment (PIP):-


                      Love and best wishes,
                      Kayleigh x
                      Last edited by Kayleigh; 9 September 2019, 18:53.


                        Oops, sorry, I didn’t realise. Just trying to be helpful.... too zealous, obviously.

                        Oh well, it was a good try.... hubby is over 65.

                        Wailywoo x
                        Never take tomorrow for granted!


                          No problem Wailywoo. It's good you mentioned Attendance Allowance anyway because other people will probably be interested to read about it and not everyone will already be aware of the different benefits that are available.

                          Love and best wishes to you and your husband,

                          Kayleigh x
                          Last edited by Kayleigh; 9 September 2019, 21:35.