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We need a consultant for help with our 17 year old's CP

heidiajheidiaj Member Posts: 3 Listener
edited September 2020 in Cerebral Palsy
Hello, we are in West Sussex and are looking for a consultant to review my 17 year olds CP. we seem to have dropped through the gaps and have never had an NHS consultant as her diagnosis was private when she was 8. She is getting all sorts of new symptoms but we are only being offered pain management but I would like to have someone assess her so that we can understand or rule out causes. Any advise gratefully received. Thankyou
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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    Have you spoke to her GP? This is usually the first thing you do and then they will refer her to who ever they think is best.
    Community champion and 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.
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  • Cher_ScopeCher_Scope Scope community team Posts: 3,130 Disability Gamechanger
    Hello @heidiaj and welcome to our online community.

    I've moved your post to our Cerebral Palsy discussion board so other people who have knowledge/experience of CP can spot it and help.  

    I think @poppy123456's advice about speaking to her GP is a good first step.  They should be able to refer her on for specialist NHS care.  

    Also, who is offering pain management? I can understand you wanting more support as her symptoms develop so I do really hope you get it ASAP.  
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  • Richard_ScopeRichard_Scope Scope community team Posts: 2,694 Scope community team
    Hi @heidiaj
    Good to meet you. 
    As @poppy123456 has mentioned, speaking to your G.P. should be your first action, so your daughter can be put on the Cerebral Palsy Pathway. Can I ask, what are the new symptoms? If your daughter has been referred to the pain management team then she must have been assessed by the NHS at some point?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • heidiajheidiaj Member Posts: 3 Listener
    hello and Thankyou for your comments. She is currently under a rheumatologist for Hypermobility syndrome but who has said she knows nothing about CP. our GP has said he can’t refer as it has to be from physio but they would only refer to pain management. She is getting pain and lack of feeling in her left (CP) side leg. We don’t know whether this is CP related but as she has never been under a NHS consultant for CP and has not been monitored for it we just don’t know if it is related or not. I think we need an assessment of her CP before just moving to pain management?
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  • Richard_ScopeRichard_Scope Scope community team Posts: 2,694 Scope community team
    Hi, @heidiaj your G.P. is incorrect they have the ability to refer to any consultant. If you click on the link to the Cerebral Palsy Pathway that I shared this will explains how the referral system is supposed to work. You can also show this to your G.P. Your daughter is entitled to be seen by a neurologist, orthopaedic consultants and neurological physiotherapists. This is called the multi-disciplinary approach.

    There are centres in the U.K where your daughter could be referred.

    National Hospital of Neurology & Neurosurgery, London

    Robert Jones & Agnes Hunt Hospital, Oswestry

    St Georges Hospital, London

    Nuffield Orthopaedic Centre, Oxford

    University Hospital, Bristol

    Royal National Orthopaedic Hospital, London
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • heidiajheidiaj Member Posts: 3 Listener
    This this is so helpful. Thankyou so much
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