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  1. #1
    Forum Member
    Join Date
    Aug 2019


    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 Iím 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 Iím 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

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    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.

  3. #3
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    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.

    Iím going to do this even if it kills me!

  4. #4
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Greater Manchester
    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.

  5. #5
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    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.

  6. #6
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    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; 7th September 2019 at 12:19.

  7. #7
    Forum Member
    Join Date
    Aug 2019
    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 itís 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 canít get universal credit to help with childcare because I earn to much a month!! Iíve 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!!

  8. #8
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    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.

  9. #9
    Forum Member Wailywoo's Avatar
    Join Date
    Jan 2019
    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; 9th September 2019 at 09:30. Reason: Missed a bit

  10. #10
    Forum Member
    Join Date
    Jul 2018
    Correct me if I am wrong but I think attendance allow is just for over 65S ?

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