Need help please so upset

collyteece
collyteece Community Member Posts: 2 Listener
in Cerebral Palsy Network

I went to see a neuro about my eye problem I was having. I’m 40 and I haven’t seen a specialists since I was 4!!!!! Anyway.. I’m having a lot of pain in my hip and falling over a lot. I’m under no one….
anyway I seen this neuro for my eye and he said he would be happy to talk about my cerebral palsy!!!!! Yay !!!!! Finally someone that wants to help? Well he’s asked my doctor for my notes about my cp and my do tor has said there is none?????? None ??? What ??? Where I was diagnosed has shut down and I only have the scrappy piece of

Paper saying I’m diagnosed :(


so where do I go from here ? I’d love to talk to a medical professional about my. Cp :(


im now in Pain relief everyday for it :( with no care plan or plan ????


Sad really :(

Comments

  • Holly_Scope
    Holly_Scope Posts: 6,351 Online Community Team

    Hi @collyteece and welcome to the community. I'm incredibly shocked that the NHS doesn't have a record of your diagnosis, especially as you were seeing a specialist at 4. I would suggest contacting your GP to arrange an appointment to discuss you CP and the missing diagnosis, and how you can move forward with this. Especially with being on pain relief daily with no care plan in place - you deserve the right support.

    @Richard_Scope, @SaraC_Scope @Lucy_Scope do you have any additional advice as CP specialists please?

  • Richard_Scope
    Richard_Scope Posts: 3,983 Cerebral Palsy Network

    Hi @collyteece
    You are entitled to see all of your medical records, and the Patients Association should be able to help you. They can also help with locating missing records.


    You are not alone in feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair, and since I hit 40, I have felt the changes in my mobility and energy levels.    

    We CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk, etc, this can lead to fatigue.  Pain and falls may also increase.

    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy, etc.   

    There is also something called Post-Impairment Syndrome that is related to CP. This refers to additional conditions that might be acquired by someone already living with CP. 

    Here is an excellent blog post about it:   

    What Post-Impairment Syndrome Means to Me  

    The next time you speak to the neurologist, you can also mention the CP Care Pathway, which instructs how and when to refer to the UCLH Cerebral Palsy Service. 

    My team and I all live with cerebral palsy, and we're here to support one another. Don't feel alone.

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