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New member

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. 


  • April2018momApril2018mom Posts: 2,869 Member
    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. 


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,616 Disability Gamechanger
    Hi @JannR and welcome to the community! How are you today? Let us know if there is anything we can help you with :)
    Disability Gamechanger - 2019
  • linlin01linlin01 Member Posts: 38 Courageous
    Hi @JAnnR,  welcome to the community, I hope you find it useful 😊
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @JAnnR welcome to the community.
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Welcome to the community @JAnnR :)
    Senior online community officer
  • Connie00Connie00 Member Posts: 255 Pioneering

    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. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger

    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.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,968

    Scope community team

    Welcome to the community @JAnnR. :smiley:
    Senior Community Partner
  • Connie00Connie00 Member Posts: 255 Pioneering
    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
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    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:
    Winner of the Scope New Volunteer Award 2019.   :)
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    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
    Winner of the Scope New Volunteer Award 2019.   :)
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