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I'd like to hear other people's experiences of medical support with CP

emmalivemmaliv Posts: 17Member Connected
edited November 2016 in Cerebral Palsy
Hi my name is Emma and I am 40 years old, I have a husband and three young and beautiful children. I am also a speech and language therapist. I should also mention I have cerbral palsy (a right sided hemi) 
As you can image my life is very busy and up until last year I was a  very active working mum. I have always walked with out aids and apart from a limp some poor coordination and not much balance I was doing ok. Unfortunately last year the ageing process caught up with me and the hip and back pain I experienced got worse and after many false starts I was diagnosed with hip dysphasia and needed major surgery. It has been a long and painful recovery. I now walk with crutches and my hips are deteriorating. 

I need to to be honest that one of the reasons for joining today is to find out about your experiences accessing medical support 

Replies

  • emmalivemmaliv Posts: 17Member Connected

    I have had difficulty accessing specialist knowledge and timely support throughout my adult life which has led to frustration, miss diagnosis and mis management. The lack of a lead consultant for my CP and the difficulties accessing knowledge and services,means  I feel I have spent much of my adult life 

    1. Getting people to acknowledge that things are getting more difficult for me (and that I am neither anemic or depressed)
    2. Not knowing where to go when I need help (and having to be the person to suggest treatment options to my GP)
    3. Being able to access services when I need them
    4. Finding specialist consultants in whom I feel confident, who understand my condition and treat me holistically and understand the functional impact of my difficulties

      I think these problems are due to

    • No easy and clear transfers between children and adult services 
    • Lack of understanding of the longer term impact of living with CP
    • No individual practitioners who hold a specialised knowledge of Adults with CP
    • No co-ordinated services to allow access to treatment at key times
    • Difficulty accessing specialist knowledge. 
    I would really like to hear other people's experiences. Are my experiences common and what solutions have you come up with? 
  • maryemarye Posts: 10Member Listener
    I wentvfor a cons
  • maryemarye Posts: 10Member Listener
    I went once for a consultation to the Bobath centre in North London which is a specialised physiotherapy clinic. The phtsio was marvellous and understood my condition completely. She explined to me why my body experiences all the different feelings that it does. It was axreal eye opener for me. She made recommendations to my Gp but he wouldn't ageee to botox injections so that was that! I wish I had been 
  • maryemarye Posts: 10Member Listener
    I wish I had been more assertive with the gp. (Last bit of post)
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Thanks so much for sharing @emmaliv - it is so hard when you feel you aren't heard or supported.  You have to be your own advocate but that is easier said than done.  Best of luck to you, I am sure you'll get some more experiences here too.
    Scope
    Senior online community officer
  • DadarriaDadarria Posts: 4Member Listener
    Hi Emma, I just joined up..have never joined in an online discussion/forum/blog etc. But we are really running out of options to get services/therapies for my 22 year old nephew with severe cp from birth.  Even though we have what would appear to be plenty of professionals involved...it is just not working effectively or the things that are working fall apart and we start all over again.

    The reason for going online is 
    our immediate need us for a neuro psychologist for my nephew and also family therapy counselling.. These services are not a nice to have,  but rather have been ordered by the Court of Protection to be in place. After a long inquiry and evaluation period,  we were told that the council will not provide family therapy as they deemed the need as not serious enough despite the court ruling otherwise. We are on a waiting list for a psychologist.. Goodness knows how long we will wait.  It took over a year for  services such as OT,SLT, physiotherapy etc

    We are facing new challenges for next year as the college will not  be available and we have don't have any alternatives lined up that can  both be  stimulating and provide the extensive support my needs. He is non verbal yet fully intellectually aware.
    So, I support your initiative to raise awareness of the plight of adults with cp and their families. 
    Amy Dadarria 

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