NICE Published Guidelines for Adults with Cerebral Palsy - Page 2 — Scope | Disability forum
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NICE Published Guidelines for Adults with Cerebral Palsy

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  • trubble
    trubble Community member Posts: 2 Listener
    Does what I’ve read mean people with CP actually get some kind of benefits paid. My son applied some 15 years ago and because he could walk something like 400 metres without falling over he was denied, all he wanted was a blue badge as he was finding it hard to park a reasonable distance from work. He’s now 35 and like most people with a permanent disability he just gets on with it.
    How do I get him to apply for,( what I think he’s entitled to) the benefits, without him thinking it’s a complete waste of time and effort 
    He still lives at home with us and is costing us a fortune as his job isn’t the best of payers, but options are limited, and he likes what he does and just plods along.


  • Colabear21
    Colabear21 Community member Posts: 8 Listener
    Yes apply for PIP (was DLA) obviously it will all depend on his answers to what he can do and how far he can walk, you can ask your GP to write a letter stating what pain meds he is in if any and ask his orthopaedic consultant to do the same if he has one.  But if he lives at home and you look after him he should get something, I live alone and my parents and my partner do everything for me.  you only need to get the minimum rate of mobility to qualify for a blue badge but you may be able to get one without my nan does check with your local council.  But the system is all wrong we as people with a condition like CP a from birth shouldn't have to fight for help or a badge.  Good Luck!!!
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    trubble said:
    Does what I’ve read mean people with CP actually get some kind of benefits paid. My son applied some 15 years ago and because he could walk something like 400 metres without falling over he was denied, all he wanted was a blue badge as he was finding it hard to park a reasonable distance from work. He’s now 35 and like most people with a permanent disability he just gets on with it.
    How do I get him to apply for,( what I think he’s entitled to) the benefits, without him thinking it’s a complete waste of time and effort 
    He still lives at home with us and is costing us a fortune as his job isn’t the best of payers, but options are limited, and he likes what he does and just plods along.


    Hi here is our Benefits Calculator that might help you and your son work out what he may be entitled to. I agree with @Colabear21
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    We (a small charity I am a trustee of) have just had a NICE consultation on the quality standards for adults with  CP sent to us for comments by 4/4/19.  It seems to be related to this but i had not heard of it anywhere else.  Sorry I cannot find a link to it on the NICE website...only a PDF they sent us. What do others know about this?

  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @forgoodnesssake
    I am not aware of a consultation related to the guidance. Could you email the PDF to me?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    With regard to the very short deadline on this latest consultation (opened last thursday 21st March and closes next Thursday 4th April...but requires quite a lot of reading to make sensible comment) this is the response I have had from NICE, who I rang today

    "Thank you for contacting the National Institute for Health and Care Excellence (NICE) with your query about our quality standard on Cerebral palsy in adults [GID-QS10080.]

     I have liaised with a senior colleague in our Quality Standards team about your query – and they have provided this response.

     ‘The two-week period for topic engagement forms one aspect of the overall 40-week development process for quality standards, which includes a further 4 week consultation period on the draft quality standard, as set out in the process guide on the NICE website.

     We do endeavour to extend topic engagement where possible, for example should it fall over public holidays etc. We do also adopt a flexible approach, (where possible within the wider development process) if people are struggling to submit their ideas on the priority areas for improvement within the timeframe set for topic engagement. Any requests for an extension to submit comments should be sent to: QStopicengagement@nice.org.uk ‘"

     


  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    "The NHS is not compelled to act on the guidelines - which are for England only - but services are expected to take NICE recommendations into account when planning and delivering care."
    I just found this in a BBC article about a different set of nice guidelines. 
    Quite telling though... Basically they can be ignored as long as they are "taken into account" whatever that actually means
  • SteveE
    SteveE Community member Posts: 88 Pioneering
    SteveE said:
    Agreed - I just feel "we have been here before" and that good intentions, such as these guidelines, remain just that - intentions.

    Interesting that you mention "your GP" - it would be good to have a GP who knows us and a GP who knows about the kind of services appropriate for someone with CP. An annual health check with the GP would also be helpful...

    Sorry if I sound negative - isomething to do with a noticeable shrinking of support over the last few years - and if I find a health (or social care) professional taking a proactive and holistic approach then I will admit I was too pessimistic. Until then...

    Just to bounce this one after nearly five years. Gulp. We have heard absolutely nothing on this from any service. Are the NICE guidelines still valid? Are they binned? Or updated?

    We're hitting so many brick walls now. We've just asked for a long-overdue Annual Health Check (remember them?) and the GP place told us to ring at 8.30am to book a same-day appointment. It is clear the surgery knows little, if any, about these guidelines.  As it is it will be 10 days before we can ring in the hope of a same-day appointment. And if we're unlucky, it might be 2024 before we will be able to try again. Almost every service now needs a referral. No service seems to take a proactive role, they all seem to be reactive only. Only Podiatry seems able to proactively arrange regular appointments. 

    It seems to us that we are quite alone now - Podiatry excepted! 

    Hope everyone is coping despite the obstacles.

    Steve E

  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    @SteveE the guidelines are still relevant but they remain guidelines, which is not enough. Myself and others are working on the guidelines being a directive for managing the care pathway for adults with CP. 
    Like with most things involving the NHS in recent times it is somewhat of a lottery; some GPs are very proactive and knowledgeable whereas others are not.
    The Cerebral Palsy Service at UCLH and the Bobath Adult Review Service are two that I can suggest speaking to your GP about.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

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