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Whistle Blowing.

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    Whistle Blowing.


    I bitterly regret not involving you all from the onset in relation to my mother’s life journey with MND.

    I have found your strength, determination, compassion and good humour to be a source of inspiration.

    I intend to contact my MP today in order to request assistance with discharging my mum from hospital and returning her back home. Problems have arisen due to the Clinical Commissioning Group, the Continuing Health Care Team and the Health Case Management Team. I intend to relay the alleged appalling treatment that we have received from these ‘so called’ Professionals.

    No need for regrets Juliette.

    You need to channel that energy now into getting your lovely mum home. It appalls me what some people have to do to get CHC

    I posted on your other thread about maybe getting your mum into a hospice as an interim measure??

    Sending you a big hug in support.

    Keep us posted.

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


    • There is much abuse in the NHS.

      People are good at turning a blind eye to what really is going on. I am afraid to say this includes MNDA.

      Both your MP and BBC will have emergency lines.

      Hospices can be as bad as hospitals. Your mum needs consistent carers.

      i have seen it/done it.

      Love Graham


        Good luck with your complaints Juliette. Lynne x
        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.


          Good morning Juliette

          Thank you for the compliment and the update.

          I hope you have some success in getting your mother home.

          From my own information I wonder if you've had any contact with the PALS team at the hospital?

          Find out more about the Patient Advice and Liaison Service (PALS), which offers confidential advice, support and information on health-related matters.


          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

          "Things turn out the best for people who make the best of the way things turn out"


            Hello Andy love,

            Thank you for your vote of confidence. I have previously involved the PALS team, located within the Hospital Trust Headquarters. The implication of the complaints of alleged conclusion
            Last edited by Juliette; 21 January 2020, 13:55.