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[Deleted User]
[Deleted User] Posts: 6 Listener
in Start here and say hello!
Hi all. I'm known as JAnnR, and I have just joined. I have a son with severe Autism, sensory processing disorder and learning difficulties. 

Comments

  • April2018mom
    April2018mom Posts: 2,863 Championing
    Welcome @JAnnR! 

    Do you have any questions for us? Feel free to look around the site and contribute to some of our discussions too. If you require any help with benefits, here are our DLA/PIP and ESA forum. 

    https://community.scope.org.uk/categories/talk-about-pip-dla

    https://community.scope.org.uk/categories/benefits-and-finances
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @JannR and welcome to the community! How are you today? Let us know if there is anything we can help you with :)
  • linlin01
    linlin01 Online Community Member Posts: 38 Contributor
    Hi @JAnnR,  welcome to the community, I hope you find it useful ?
  • emmarenshaw
    emmarenshaw Online Community Member Posts: 697 Empowering
    Hello @JAnnR welcome to the community.
  • [Deleted User]
    [Deleted User] Posts: 6 Listener
    thankyou. 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Welcome to the community @JAnnR :)
  • Connie00
    Connie00 Online Community Member Posts: 249 Empowering

    Hello @JAnnR    :) 

     

    My Name is Connie00


    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community.

    Thank you for reaching out to us, Sorry to hear about your Son its very difficult when it comes to your children you want to protect them from everything when they have illnesses, lifelong conditions, or learning disabilities, you often feel isolated. But we are her to help you and support you in any way we can

    If we can be of any assistance to you please don’t hesitate to contact us

     


    @connie00   :) 


  • [Deleted User]
    [Deleted User] Posts: 6 Listener
    Hi, thankyou for welcoming me to this group. I was wondering if anyone has any tips on how to keep track of appointments. I currently put my sons appointments on my mobile phone on calendar, but I am struggling to remember what each professional involved has said. They seem to think that I can remember what was said at each appointment even when it was months ago, sometimes even over a year and often the professionals involved change each time. Its very overwhelming. My daughter is 14 and has anxiety issues so she is under different professionals which is even more confusing. Any tips would be greatly appreciated. 
  • poppy123456
    poppy123456 Online Community Member Posts: 64,463 Championing
    Hi,

    The easiest solution to this  is to request a copy of any follow up letters that are sent to the GP. A Consultant will always send a letter to the GP a few weeks later. I have all my letters and all my daughters letters from every single appointment we've attended.

    Once i receive them i put them all into a file and keep them for when ever they are needed.
  • Adrian_Scope
    Adrian_Scope Posts: 11,754 Online Community Programme Lead
    Welcome to the community @JAnnR. :smiley:
  • Connie00
    Connie00 Online Community Member Posts: 249 Empowering
    Hello @JAnnR
    my good colleague @poppy123456 is very correct in what she is saying, I have always requested a copy of letters that they write to the GP and keep these in a folder, this folder comes with me to every appointment, and every time I go into hospital, it contains my medical history and all medications that I take.

     Connie00   :D

  • [Deleted User]
    [Deleted User] Posts: 6 Listener
    I do keep letters, but I don't always get them. My son is under CAMHS and we have some professionals visit us at home so there are no letters. I have to remember to pass information on between different services, as communication isn't great. I just had a big child in need meeting at school last week, and the OT didn't even turn up. I last saw her in the first week of the holidays and I forgot what she said
  • Ails
    Ails Online Community Member Posts: 2,237 Championing
    Hi @JAnnR and welcome to the Community.  It is nice to meet you.  It is hard keeping track of appointments and what medical staff say as I find that too at times so it is a really good idea you've been given to request letters to keep.  Sorry to hear that the O.T. never turned up at your child's meeting.  That is quite frustrating.  Please keep in touch and let us know how you are getting on.  If there is anything further we can help/support you with then please just let us know.  All the best.  :smile:
  • Ails
    Ails Online Community Member Posts: 2,237 Championing
    Hi @ChristineHughson7 and welcome to the Community.  It is nice to meet you and have you on board!  Thank you for sharing with us.  I am sure you will enjoy your time on the Community and meet some new friends along the way.  A lot of members will find your contributions to the Community really helpful as getting a diagnosis and managing appointments, etc, is really stressful so thanks for offering to help.  Your assistance is really welcome!  Lots of lovely, friendly people on here to chat to.  If you need any support/help with anything at all then please just let us know.  All the best.    :D

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