Support for children with CP — Scope | Disability forum
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Support for children with CP

mking
mking Community member Posts: 2 Listener
Hello, My toddler has CP (hemiplegia). We're considering moving back to the UK, from  Canada. He currently gets a range of services / therapies through state health provisions here. I'm trying to get a sense of what is provided thru the NHS, what waiting lists are like and if we need to brace ourselves to privately cover any short falls. Here in Canada he currently sees an Occupational Therapist, physiotherapist, Speech and Language pathologist regularly. What are peoples experiences with accessing therapies on the NHS? Is there an age cut for funded services? Thank you. Any advice or experiences shared very much appreciated. 

Comments

  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    Hi there @mking,
    There are a wide range of support services available on the NHS and waiting times are generally not too bad, at least when it comes to paediatric care. However, something that I was personally underprepared for was how much this changes upon reaching adulthood. CP itself is classified as being a paediatric condition, which means that although its lifelong, there is significantly less support as we get older. For example: I used to see an NHS physio once a week when I was a child, as an indefinite arrangement. I saw the NHS again about this recently (aged 24) and was told that I could only access a short course of treatment, having to rely on private avenues if I wanted long-term support. 

    I think you’d be okay for right now, but please do plan ahead for the future, too! I’m wishing you the best of luck and also tagging @Richard_Scope, in case he has any further insights :)
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @mking
    Your son should have access to a paediatrician a paediatric neurologist and physiotherapy through the NHS under paediatric services. I would also supplement that with private treatments from the likes of Bobath or the Movement Centre

    As @Danielle_2022 has mentioned there is currently a 'cliff edge' in the transition from paediatric to adult services. However, that is something that Scope has pushed hard to change by being one of the driving forces behind the Adult CP Care pathway

    @Danielle_2022 it might be of use to you too. What you have been told is not correct and your GP should be aware of the pathway. 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • mking
    mking Community member Posts: 2 Listener
    Thank you very much for info. Really helpful. 

    You don't mention seeing an occupational therapist, we work with one here for my sons fine motor skills ( mainly dexterity in his hand ). Is this role performed by the physio under the NHS scheme?

    Thanks also for private treatment center recommendations. Great info. 
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    @Richard_Scope,
    Thanks for the heads up on that. The experience as a whole wasn't pleasant, for lots of reasons, so it's good to know that there are other options available. I do wish it was more widely known about, though!

    @mking,
    You should definitely be able to get in touch with an OT. It's a different role than physio, but generally under the same hospital care, from what I understand :)
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.

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