Cerebral Palsy
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Hi, my name is vikmin83!

MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
edited March 24 in Cerebral Palsy
Hello, I have just joined you all here so I thought I would say hi. My GP has recommended reaching out to your community in the hope of advice on treatment and managing my CP as I get older.
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Replies

  • janer1967janer1967 Member Posts: 11,120 Disability Gamechanger
    Hi and welcome 

    There are lots if members with CP and also a section dedicated to it 

    Feel free to have a look around and join in 
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    edited March 24
    Hello @vikmin83

    Welcome to the community, glad to hear your GP pointed you our way.

    Is there a particular aspect of your CP that you are struggling with at the minute?

    As mentioned above, we have a dedicated Cerebral Palsy category, which I have moved your discussion into, and we have many other members who have CP. As well as the lovely @Richard_Scope, who is a specialist information officer for CP :) 
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  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    Hi and thank you!
    Employment, benefits and treatment advice so a lot lol
    I’ll find my way around soon I’m sure 🙂
  • chiariedschiarieds Community Co-Production Group Posts: 9,108 Disability Gamechanger
    Hi @vikmin83 - & welcome to the community from me also. You can just ask your questions here, should you wish, or open a new discussion(s). Either way, our members will do their best to help, so fire away! And I hope you enjoy being part of this friendly & supportive group. :)
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    vikmin83 said:
    Hi and thank you!
    Employment, benefits and treatment advice so a lot lol
    I’ll find my way around soon I’m sure 🙂
    Well if you would like to provide some specifics I'm sure our members would be willing to advise :) 

    Are you currently claiming any benefits? :) Are you trying to find employment or are you in work?

    Regarding treatment advice, our members can share their personal experience but we can't give medical advice, for that you would need to speak with your GP.
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    Talk to our chatbot and give us feedback on the community.
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    edited March 24
    I’ve just been awarded PIP but only lower rate mobility and not the daily living part so I’m going to try and appeal that. I’m not claiming anything else and I’m not sure what I could claim.
    I’m off work sick and my SSP has ended, work have referred me to occupational health so I’m waiting on that.
    My GP isn’t sure who to refer me to as I’ve had no input regarding my CP since 9. I have no idea if there are medical interventions that might help such as Botox or how to go about accessing them @Ross_Scope
  • chiariedschiarieds Community Co-Production Group Posts: 9,108 Disability Gamechanger
    May I ask if you have done a Mandatory Reconsideration as far as PIP goes @vikmin83 ?
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    edited March 24
    I’m getting on it tomorrow, am I right in thinking that’s the first step?
    @chiarieds
  • janer1967janer1967 Member Posts: 11,120 Disability Gamechanger
    Hi 

    Yes mr is the next stage for appeal 

    You may be entitled to new style ESA depending in your circumstances and if you have made ni contributions 

    Use a benefits calculator to see what you may be entitled to 
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    Trouble is trouble is most are means tested and my partner is on the border of the income threshold. 
    Yes, I’ve always worked so the NI contributions are fine. @janer1967
  • chiariedschiarieds Community Co-Production Group Posts: 9,108 Disability Gamechanger
     Hi @vikmin83 - yes, you're right, a Mandatory Reconsideration (MR) is the next step, & has to be gone through before an appeal can be made to a Tribunal. You should put your MR in writing (make sure you put your name & National Insurance number on each page), & try & give a couple of detailed examples for each activity/descriptor that applies, about your functional problems as they were at the time of your assessment.....exactly why was the activity difficult, what happened, who actually witnessed it, how did doing/attempting each activity make you feel afterwards, if this applies? It really should be as detailed as this. If you use aids, mention them, if you need help to do an activity, regardless of whether you get the help you need, say so.
    If you haven't done so, it would be worth looking at the following list of the PIP descriptors. Please see: https://www.cambridgeshire.gov.uk/asset-library/Scores-for-PIP-Descriptors-2020.pdf
    Please also read the notes at the end; if you can't do an activity 'reliably,' i.e. safely, to an acceptable standard, as often as it would be reasonable to expect, or it takes you longer than someone that doesn't have CP, then this should be mentioned too.
    If you have any questions about this, please say.

  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    Thank you that’s really helpful. I think it’s mostly the time and pain factor they haven’t considered. I will get on to it tomorrow, it’s just all so overwhelming when you don’t know how the system works. @chiarieds
  • chiariedschiarieds Community Co-Production Group Posts: 9,108 Disability Gamechanger
    edited March 24
    Altho pain is not specifically mentioned, this should be taken into account if this hinders your function, so always worth mentioning, as well as the time factor. Altho your whole claim will be looked at again, don't worry. Usually an award stays the same; I think unfortunately currently about only 17% of claims result in a better award with a MR, but it does happen. Speaking only from personal experience, I went from 10 points for mobility to 12, so gained an enhanced award for mobility, rather than standard. I also gained an additional point for the daily living component with my MR.
    Please let us know how you get on, thank you, & do give a couple of detailed examples of the difficulties you faced for each applicable activity.....that's so important, & I cannot stress it enough.....that's what will gain you an appropriate award for PIP. :)
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    Thank you, I sure will and I’m more than happy to help anyone else I can ☺️ @chiarieds
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    vikmin83 said:
    I’ve just been awarded PIP but only lower rate mobility and not the daily living part so I’m going to try and appeal that. I’m not claiming anything else and I’m not sure what I could claim.
    I’m off work sick and my SSP has ended, work have referred me to occupational health so I’m waiting on that.
    My GP isn’t sure who to refer me to as I’ve had no input regarding my CP since 9. I have no idea if there are medical interventions that might help such as Botox or how to go about accessing them @Ross_Scope
    Hi @vikmin83
    It's really good to meet you. I have CP too as do many other fantastic members of this community. I'm really sorry that you were so let down by paediatric services and rather annoyed for you that your G.P. doesn't know where to refer you to now. Let's start by me asking what's happening with you and your CP? And what you G.P. has actually said or offered to you can then try to help you as best I can.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    Hi, nice to meet you too.
    My CP mainly affects my legs but in general is very mild but it seems to be affecting me more as I get older.
    I have severe back issues (because I can’t bend to lift safely) and have recently had surgery.
    my mobility and pain from spasms and shortened muscles is becoming more of an issue.
    I’ve told my GP I want to see someone to be assessed and to see if I have any treatment options but she’s unsure what direction to send me. She’s mentioned muscular skeletal physios?! But I’m not sure how much they can help with treatments
    Hope that makes sense @Richard_Scope

  • chiariedschiarieds Community Co-Production Group Posts: 9,108 Disability Gamechanger
    Hi @vikmin83 - just to say your GP would do better to get you a referral to a neuro physiotherapist. Physio certainly can help, as I'm sure Richard will agree. I have a certain bias, as I'm a physio, tho haven't worked as such for a long time. I specialised in treating children with CP, so am saddened that so many adults receive little or no help now, which of course shouldn't be the case, but there is help out there.
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    That’s very helpful thank you! @chiarieds
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    @vikmin83 that makes perfect sense.
    Scope has worked with the National Institute of Clinical Excellence (NICE) to create guidelines for an Adult CP Care Pathway. The problem is making G.Ps aware of it and making sure they adhere to its recommendations. Please share this with your G.P. or ask them to contact me.
    You should be referred to a Multi-Disciplinary Team (MDT) consisting of: Neurologists, Muscular-skeletal consultants, neuro-physiotherapists, physiotherapists orthotists and in many case dieticians and nutritionists.

    The neurological aspect of our disability doesn't change but our mobility definitely does over time due to physiological burn-out and standard ageing. Have you looked at our Cerebral Palsy information pages? I have created some useful pages for people to refer to.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • MsFallsAlot83MsFallsAlot83 Member Posts: 16 Connected
    Thank you that’s great! @Richard_Scope
  • chiariedschiarieds Community Co-Production Group Posts: 9,108 Disability Gamechanger
    Hi @vikmin83 - you might like to join a virtual chat to meet Richard & some of our other CP members in the CP online Cafe next Monday (29th) from 4 -5.30 pm. Here's a link so you can sign up should you wish:

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