Viewing 4 posts - 1 through 4 (of 4 total)
  • #166245
    Becker muscular dystrophy

    Hi my name is Sasha I’m new to all of this my son is 3 and he’s just been diagnosing mosque Becker muscular dystrophy as I’ve had all new year two kind of process everything I thought I will call up a lady who works at Great Ormond Street to see if I could get a specialised buggy as my son struggle sometimes to walk to school and it’s just so much easier to put him in a buggy buggy I’ve got or some of the bug is out there I’m not suitable for him they cannot hold his weight the lady said she would get back to me and I still haven’t heard anything so still feel a little bit alone on this and that maybe I shouldn’t have asked at all is still a little bit of a shock

    Sorcha

    Sorcha
    Participant
    Posts: 0
    Joined: 03/01/2019
    #166248
    Reply To: Becker muscular dystrophy

    I feel alone with this will I feel there’s nowhere to go nowhere to turn the only time I ever get any answers when I go to Great Ormond Street and that’s only once a month most people on the phone try to ignore me or do not call me back is anyone got any suggestions or somewhere that I may can go

    Sorcha

    Sorcha
    Participant
    Posts: 0
    Joined: 03/01/2019
    #167718
    Reply To: Becker muscular dystrophy

    Hi Sorcha.

    Information Team a call on 0800 652 6352 or email info@muscular-dystrophy.org

    Above is details for Muscular Dystrophy UK helpline. they have regional Care advisers who may be able to help you navigate the system.

    In scotland where I live, a persons GP can refer to Wheelchair services for assessment. I believe it is different from region to region.
    Put your request in writing to your GP and hand over at appointment. Having the request written makes official and lets you state fully what the issues are. It is bad for your child’s posture to be in a regular buggy that is not suitable for his weight and height.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #167719
    Reply To: Becker muscular dystrophy

    Hi Sorcha.

    Information Team a call on 0800 652 6352 or email info@muscular-dystrophy.org

    Above is details for Muscular Dystrophy UK helpline. they have regional Care advisers who may be able to help you navigate the system.

    In Scotland where I live, a persons GP can refer to Wheelchair services for assessment. I believe it is different from region to region.
    Put your request in writing to your GP and hand over at appointment. Having the request written makes official and lets you state fully what the issues are. It is bad for your child’s posture to be in a regular buggy that is not suitable for his weight and height.

    If you have a council social worker or Occupational therapist. Ask if they can refer or write a letter of support to get things started. Seating and Moving & handling is part of there remit.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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