Results 1 to 6 of 6

Thread: Whistle Blowing.

  1. #1
    Forum Member
    Join Date
    Apr 2018

    Whistle Blowing.


    I bitterly regret not involving you all from the onset in relation to my motherís 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 Ďso calledí Professionals.

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member
    Join Date
    Dec 2010
    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
    Copyright Graham

  4. #4
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Good luck with your complaints Juliette. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    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?


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

  6. #6
    Forum Member
    Join Date
    Apr 2018
    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; 21st January 2020 at 13:55.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts