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Later stage costs

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    Later stage costs

    Hi guys

    Im just waiting for emg to confirm diagnosis.

    Been thinking alot about pension pots and such like and which would be best to do.

    If we cash in my pension, my wife will have a decent enough amount of savings to last her at least until she retires. If i just retire normally we just get a monthly paymnbt until i pass and then my wife just gets half my pension which is also taxed as she will still continue working.

    However, im a little worried if late stage costs for nurses and carers have to be made by us if we have over a certain amount of savings. Do we have to pay for palititive care and hospice or is this part of the nhs?
    Last edited by Shepster34; 21 February 2021, 13:42.

    Shepster34 I think you are jumping a little ahead, however where care needs are health related the NHS have a responsibility to fund this, you would be assessed for Continuing Health Care. However in my experience this is usually at a point when care needs become complex.


      Hi Sue

      I cant control this disease so im trying to control what happens later. I know it sounds morbid.

      So CHC has to be assessed. Surely mnd patients are up there with cancer patients. Its terminsl. Who provides medical care, drugs needed? Is it not arranged by the nhs?

      so the main thing is its not means tested? The chc is based on need no matter what savings you have?


        Seriously Paul, get a grip on who exactly the forum members are, and what our challenges are.

        Today, Sue wrote this, but it could have been written by most of our members:
        Originally posted by SueM View Post
        I still have my voice, but am losing the ability to use a key board even on the iPad, and writing is nearly impossible.
        Please respect us and hold off posting on the non-MND Connect forums until after your EMG.

        Thank you.

        ​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


          Shepster34 I don’t suffer with this evil disease but my mind is wired such that if I did I too would be investigating all financial angles before making any decisions.

          Good luck


            Please don't encourage this person. 😠
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              Apologies to everyone.
              I didnt mean to offend anyone.

              I'll return after i have my diagnosis.

              Thank you for all your help