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Who needs to know?

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    Who needs to know?

    I've been doing a lot of reading tonight; carers, sufferers, families etc. It made me think about who needs to know.

    I've told DVLA - but not my car insurers
    I've told the bank that supplies our travel insurance - sadly, i have forgotten what they said! Must check up what the result was!!

    I have a 97 year old father, and i have not told him; even with his STML, i think he would remember that; he was the carer for my mother when she contracted MND back in the 1970s; still has a frozen shoulder from moving her onto a commode. I am not particularly disabled yet, so still try to do things for my dad - I have financial POA, but am failing to get the medical side sorted yet. We have not told Mother In Law either - the parents left deserve not to have bad news foisted on them.

    My question - who needs to know? What things can be affected - what kinds of insurance? Anything or anyone else?
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

    Hello Evelyn
    re car insurance you should tell , important thing to know , they cannot raise your premium, or refuse cover it’s against the disability discrimination act,
    they do have a small get out, they have to have evidence you are at an increased risk , but if dvla say you are okay drive then they can’t claim that

    house insurance, disability has nothing to with it, but you may want to increase cover for any additional equipment you need

    travel insurance yes you have to tell them , but check their what’s not covered in the small print.

    this is quite a good website to look at for advice

    your employer , you don’t have to tell them , do it when you are ready, but they should make all reasonable changes to help you
    discrimination act is on your side , also most large employers will have a diversity inclusion policy

    As long as there’s golf and beer I’m happy


      Hi Evelyn,
      I informed council as applied and succeeded in getting council tax reduction as a bedroom is used for through floor lift.
      The Lasting Power of attorney was already set up for health and finance so took a copy of LPA for health to GP to scan into my health records,
      I ensured Respect/ Do nor resuscitate form was completed and I will take that into hospital with me next week.Plus copy of LPA for health)
      I chose to stop driving so informed DVLA and the applied for a blue badge .
      I informed my catholic priest as part of my spiritual preparation .
      A lifeline was obtained as back up in case of emergency .
      A PIP application was done and accepted.
      I was still working but off sick when diagnosed with MND so lots of finance stuff, work pension etc had to be sorted.
      I am a list writer so started a list of who health professionals involved to make it easier for my husband to contact if I become unable to and another list about who to contact to inform when I pass away.
      Its my style to try and be organised as much as MND allows for.
      Best wishes


        For me Evelyn, getting the wills up to date, getting the power of attorney sorted both health and financial. But yes PIP if you haven't already done it.

        Although my husband says he's wanting a DNR doing I think that will come the more he sees his consultant as it has to be signed by someone of note.

        As for passports and driving licences - they will just run out so he's not that bothered.

        For us daft things like the utilities were put in my name. I also got my own credit card as previously I was a 2nd cardholder on his.

        I still need to organise something for him should I pass over first - that is proving really difficult to find some kind of care that would just click in if I'm not here as I honestly don't know what would happen to him.

        As for telling people we don't have much in way of family but I have told my 16 year old grandson as he's had a close relationship with us for EVER !! he just soaked it in.
        Husband Albert diagnosed PMA Feb 21


          I realise that this is a comprehensive list but one issue pointed out to me is bank accounts. Sue and I are second marriage and we were used to having our own accounts but it was suggested we make joint accounts for my bank as the process upon deceased can be long winded. This was before I found out that my MND is slow progression but the principal still applies. The same issue applies to occupational pensions in that the provider needs to know the beneficiary.
          I’m going to do this even if it kills me!


            Wow, some of that advice was really scary! Will read it all again, and take 1 step at a time. Thank you all.

            On a work note, when i was working, i informed them when my hands were getting weaker and they, supposedly, changed my customers (I was a part time home carer). Then, some time after i had been diagnosed and told them, i finally had to resign.

            On my last woking day, they sent me to new people. i struggled with the work - they definitely hadn't considered my reduced ability - and never said a word about my resigning - not a dicky bird. I did find that a little upsetting. As a result, I would never recommend the company i worked for as an employer.

            Thought i would go crazy with no work, but it is now nearly 3 months, and i've not gone crazy yet!! or at least, any crazier!
            Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


              Hindsight and all that - they weren't people worth your time and effort - I mean the employer - absolutely unbelievable
              Husband Albert diagnosed PMA Feb 21


                I hope that you have hobbies that you can still manage. Love Lynne xx
                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.


                  Thank you both, Lynne K and SuefromWakey.
                  Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


                    Hello Evelyn,
                    sorry your employer wasn’t much help, but you may have had a case of discrimination against them.
                    For any newly diagnosed on here still working, your employer must make any reasonable adjustments to enable you to continue to work and not put you at disadvantage, if they don’t, quote the equality act 2010 at them ,
                    obviously with some jobs and depending on the size of employer, this may be more difficult to accommodate, hence the key word reasonable.
                    Adjustments could be supplying equipment, installing ramps , changing your hours, and your employer has to pay, not you. (Or access to work may be able to assist with funding) you do have to formally request help and give details of what will help

                    i have been quite fortunate I work a large global company and office based, So when I finally told them , my consultant did a report and I was interviewed by an occupational health doctor , who then made recommendations to my employer, so plans are in place for when we go back to ‘normal’
                    As long as there’s golf and beer I’m happy


                      Shaun if my company had ever had the skill or enough carers, to properly apportion work, I would agree with you. However, the company can only take on customers that ask for help; the type of help cannot be selected to meet carer needs. I had a period of less work, (on a zero hours contract), with long gaps between appointments (i hated this). If i hadn't resigned, i suspect my work rota would have reduced still further. A customer expects their carers to do what is required, not to need help to help them. As they are paying over £20 an hour, carers must be able to complete the planned actions, and within the allocated time. I would have been allowed to carry on, they would only have said something if my customers complained about me.

                      guess which company i won't use if ever i need help?
                      Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.