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  • #192119
    Which centre to move to

    Hello,
    I have SMA (type 3) and am a full time wheelchair user. I was diagnosed at 2 and a half and have been under the care of Great Ormond Street until now. However, I have just turned 18 and have been advised to move to Oxford or Queen’s Square (London) for adult services. I’m looking for some input and the pros and cons of each from people who have been to either of them as I’m unsure which to go for.
    Thank you!

    Molly Everitt
    Participant
    Posts: 0
    Joined: 10/01/2021
    #192139
    Reply To: Which centre to move to

    Hi Molly

    Welcome to Forum. Im away up in Scotland but Im sure our Mod Sar will pop along and tell you about her clinic at the Brompton

    Good group to join on facebook is Pathfinders which is a MD group.

    cat x

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #192220
    Reply To: Which centre to move to

    Hi Molly. I used to be under the care of the GOSH team and now as an adult I am at Queens Square. I’ve only been with them about 3 years but I pushed to get there as I felt they were better than the previous adult clinic at dealing with Neuromuscular Conditions.

    They have a great complex care unit that is well kitted out for overnight stays and all the different departments you may need, come to you. Let me know if you have any questions. If there’s anything you want to know but don’t want to post it publicly then feel free to send me a private message.

    As Cat mentioned, I go to the Royal Brompton as well for respiratory support. They have seen me since I was 15 and know me better than anyone so I asked to stay with them for respiratory issues.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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