Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.

Looking for some help regarding a proper diagnosis.

Heljon75Heljon75 Member Posts: 1 Listener
edited March 2020 in Cerebral Palsy
I am a 44 year old female diagnosed with mild CP as a child in the 80’s. Oh the 80’s what a blessed time to be diagnosed... (note sarcasm). After initial diagnosis and tendon lengthening surgery, the consultant turned to my Mother and told her “ Take her home and forget about that she has CP, carry on as normal” Ahhh. Mister Consultant yes, she literally took you at your word and it was forgotten about. BUT.. what they hadn’t considered was the struggle with my Schooling, the Co-Ordination issues I have every day, Behavioural and Mental Health issues I was to suffer with my entire life. So with no support as a child, no actual proper diagnosis for ADHD and Mental Illness that has plagued me forever. I’m afraid I am one of the forgotten ones. My life right now is like living in Limbo. I’m agoraphobic and a recluse, I live in my bedroom, rarely getting out of bed. I feel so let down by family and professionals of late for the past, It leaves me jaded and frustrated. I don’t trust anyone anymore, especially the NHS. I don’t want this anymore. I am living like an animal! Not a human being!!  It’s a living hell to be blunt. I’m really reaching out for some alternatives here. I have tried to be brief in this post. 

If anyone can help me, please. 

Helen. 


Replies

  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    Hello @Heljon75 and a warm welcome to the community. I'm glad you felt able to reach out to us. 
    Unfortunately our CP information officer @Richard_Scope is on leave this week but I know he'd be keen to speak with you.
    I'm not surprised you feel let down and distrusting of the NHS. Things have improved somewhat but it can still be a fight to get the help you need. Are you in contact with your local GP?
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • janer1967janer1967 Community champion Posts: 7,339 Disability Gamechanger
    @Heljon75 Hello and welcome to the community, I am sorry about how you are feeling let down with people and NHS, I am going to tag in another member who has lots experience in mental health and could sign post you to some good support. @thespiceman maybe you can offer some of your advice here. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Heljon75   Pleased to meet you.

    Thank you for joining and sharing.

    Thank you for the tag @janer1967

    I am one of the Team of Community Champions. We guide, advise and support members.

    Sorry to hear you are experiencing problems. With your mental health.

    I have mental health advise the community on mental health and anything related.

    Had my illness with anxiety and depression a long time , have an addiction history.

    Please if I can advise the following.  Mental health charities.

    All offer the following, floating support, guidance, information and advice on your problems .

    Additional support on wellbeing, health diet, nutrition, sleep and medications.

    Benefits and anything else.  Including sign posting to relevant organisations.

    Do take clientele with additional disabilities and problems conditions and illness.

    You can self refer on website or speak to your GP.

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.

    Please if I can help with anything further please get in touch.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Richard_ScopeRichard_Scope Community Team Posts: 2,595 Scope community team
    edited March 2020
    Hi @Heljon75
    I'm sorry to read that you are going through all of this. It's really good to meet you (virtually). 
    There is such a lot to discuss around what you have written. Firstly, I need to just ask, is it a mental health diagnosis that you are seeking or CP? Because you already have the CP diagnosis, whether your family were told to forget about it or not.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
Sign in or join us to comment.