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NHS wheelchair services

April2018momApril2018mom Posts: 1,744Member - under moderation Disability Gamechanger
Hello
I need advice on wheelchairs. My son has Spina Bifida and bilateral clubbed feet. We are getting his first ever wheelchair in a few months time. What should I expect? How long does it take? What sort of questions do I need to ask them during the assessment? I’ve been looking at models of wheelchairs online. But I have found that I cannot afford to purchase one directly as the price is astronomical. Seriously. 
So my question is this- Is it possible to get a wheelchair from the NHS or not? Should I try the private route? I’ve heard of charities funding a wheelchair but I have virtually no experience so any advice and tips will help us greatly. If it helps he will primarily use the chair for public places and long distances as well. There is no way that Oliver will be able to walk independently. 
His lesion level is L1. In layman’s terms that means that he has flaccid paralysis in his legs and feet. He has a upcoming appointment for a fitting for special braces for his legs. This is likely to happen next month.  


Replies

  • Ami2301Ami2301 Posts: 5,296Community champion Disability Gamechanger
    I would recommend NHS wheelchair services as a good starting point! Have you spoken to his GP to be referred?
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • April2018momApril2018mom Posts: 1,744Member - under moderation Disability Gamechanger
    No I will do so tomorrow morning. Do you have any links to any information or not? How long does the referral take? 
  • cmcicmci Posts: 36Member Connected
    If  your son is already engaged with a service they might get the referral for you and know what detail to include in referral - I was referred by the Nurse Specialist.  It took six weeks from referral to being seen,  but that differs from area to area, and another 6wks to get the chair.  They'll also want to know if he will be propelling self or if anybody else will when measuring chair size. NHS is best provider - fitted, maintenance, repair and 'upgrading' is guaranteed.  Good luck! 🎄
  • April2018momApril2018mom Posts: 1,744Member - under moderation Disability Gamechanger
    Thank you. I’ll approach them later this week. I ideally prefer a self propelled wheelchair as that will give him some degree of independence. He can use his hands and upper body. 
  • April2018momApril2018mom Posts: 1,744Member - under moderation Disability Gamechanger
    UPDATE 
    We are on the waiting list for our area. Thanks for your advice and support too I appreciate it. 
  • rayreyrayrey Posts: 11Member Listener
    Under NHS England guidelines everyone is entitled to a personal wheelchair budget, please look at  the NHS England website personal wheelchair budgets , please share this,iit is not well known
    Perhaps SCOPE would like to do an article about the advantages of  a personal wheelchair budget
  • April2018momApril2018mom Posts: 1,744Member - under moderation Disability Gamechanger
  • rayreyrayrey Posts: 11Member Listener
    Remember Rosie you as carer are legally entitled .to be  involved in his assessments,write 
    down all your thoughts on the benefits of the chair you think is most suitable,
     don let your local CCG,s penny pinching get in the way of best outcome for your child.
    NHS England has announced that  personal wheelchair budgets are now legally enforceable right
    Some words of encouragement Rosie,a member of my family was born with spina bifida it didn't stop them living a long and productive life
    Thinking of you
    rayrey

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