Hi, my name is clareaj! — Scope | Disability forum
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Hi, my name is clareaj!

clareaj
clareaj Member Posts: 4 Listener
edited October 2020 in Cerebral palsy
I need advice about my brother Martin. He is 58 years old and has recently been having quite serious health issues which have prevented him from going to work since last November. We have seen a neurologist (private) who said he thought Martin had mild Cerebral Palsy. This fits with all the problems he's had in life, and the health issues he's now having to deal with. The problem is, he's never had a proper diagnosis and his current GP has refused to refer him to a consultant, or for any support such as Adult Social Care. I do most of the looking after (he's my younger brother), but he needs professional help and support as well. I feel increasingly overwhelmed and I cannot do this all on my own. I have written to the private Neurologist to see if there are any further investigations that can be made. However, I do realise this is not a good time, in the midst of a pandemic! Has anyone any suggestions?

Comments

  • janer1967
    janer1967 Member Posts: 16,428 Disability Gamechanger
    Hi and welcome sorry to hear about your brother 

    You could self refer him for a care needs assessment on the gov website 

    A OH will come out and assess his needs and make recommendations for his care and signpost him to the required care 

    Could be aids or adaptions or social care 

    Hope others can help with ideas too 
  • Tommyb92
    Tommyb92 Member Posts: 73 Courageous
    edited September 2020
    Hi @clareaj sorry to hear of your struggles, I have had issues with referrals from GP to the hospital I now go to, may I suggest speaking to your Brothers practice manager, or maybe ask to speak to another GP. this is how I ended up getting my issues sorted and am now being seen by the right departments.

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  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @clareaj
    The private neurologist would have written to your brother's G.P. and recommended further investigation. The G.P. must and should act upon this. If the G.P. refuses, I would recommend getting back in contact with the private consultant who suspected CP and ask them to contact your brother's G.P. again.
    Out of interest, what are the G.P's reasons for refusal?
    As @janer1967 has advised, you can self-refer for a care needs assessment and an occupational therapist (OT) can assess your brother's living environment for adaptions or equipment.
    Is your brother's employer being supportive?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @clareaj - I just wanted to welcome you to the community. I hope the advice given above helps you & your brother. Please kindly let us know how you get on.  :)
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    Hello @claireaj

    Just to say a big hello from me too.  Our community is here to support you through this so if you have any other questions please ask.
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  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    Welcome to the community @clareaj :) It's totally understandable that you'd feel overwhelmed. I hope the advice above has helped? Also, just to let you know, I've moved your post into the cerebral palsy category.
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  • clareaj
    clareaj Member Posts: 4 Listener
    Hi everyone, thank you for all the suggestions and support you've sent. I wrote a comprehensive email to the Practice Manager, as suggested by Richard (a big thanks for this!) at my brother Martin's surgery and got a reply the next day, followed by action the following day!! Martin's named GP is going to liase with the (private) Neurologist as I had asked him to make further investigations. A psychological assessment has been suggested even, as well as us, his family looking into two sorts of benefits, PIPs and work capability assessment. So far good ideas - lets hope his GP really carries these forward and the impetus doesn't fall by the wayside.
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Thanks for the update @clareaj, I'm really pleased that people are now taking action and things are moving forward. Keep in touch.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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