Cerebral Palsy
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dual hand propelled wheelchair

amyjajamyjaj Member Posts: 17 Courageous
I have Hemiplegic Cerebral Palsy. I went to my doctor on 30th May to be referred to the wheelchair service and less then a week later I was  allocated a wheelchair. It arrived today, However it’s a standard wheelchair they delivered.  I phoned the wheelchair service  to say that a standard wheelchair is not suitable for me and I need a duel hand propelled one.  I have now got to wait for an assessment as they said  they are difficult to use.    Does anybody here have experience of using a dual hand propelled wheelchair?

Replies

  • Ami2301Ami2301 Community champion Posts: 7,331 Disability Gamechanger
    Hi @amyjaj welcome to the community! I will tag @Richard_Scope to see what advice he can offer. Let us know if we can help you with anything else :)
    Disability Gamechanger - 2019
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    Hi @amyjaj
    Good to have you on the community. A dual hand-propelled wheelchair is a standard wheelchair, meaning you need both hands to push it. Do you mean that you need a wheelchair with power assist on your affected side?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • amyjajamyjaj Member Posts: 17 Courageous
    No, the duel hand wheelchair is also known as the one hand propelled or hemiplegic wheelchair!

  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    I'm surprised that your Wheelchair Services team said that these particular wheelchairs are difficult to use. I know several people who use this type of wheelchair and find them very good and easy to control. I don't think you will have any problem in using one @amyjaj
    How long have you got to wait for your assessment?

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • amyjajamyjaj Member Posts: 17 Courageous
    I don’t know.  I was going to go into a mobility shop to ask if they had one to try.  Someone else in the Hemi help Facebook page has had to fight to get allow her daughter to try one as they told her they are hard to use.  She is getting one!  I think it more to do with the cost of them.  I was thinking of using the nhs voucher scheme,  so I could get a different colour one. Then standard black.
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @amyjaj

    A very warm welcome.

    Some insider information on NHS wheelchair services, based on advice of my sister in law, who has 15 years experience working as an Assistant OT.

    A referral is made by GP, to the wheelchair service, they arranges a home assessment, for a user needs assessment.

    At this visit, a further assessment can be triggered for social services OT, if adaptions are needed in the home (ramps).

    A specific wheelchair is agreed with service user and all pros and cons are discussed.

    A suitable wheelchair is then sourced, either from stock or purchase.

    The wheelchair is delivered by the assessor and basic use training is provided.

    The assessor will either arrange a follow up assessment or agree telephone contact at anytime.

    In no way whatsoever, what an assessor explain to someone with hemiplegic  CP, that a chair would be difficult to use.

    I would get in touch with your wheelchair service, to chase things up.
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    @amyjaj a lot of companies will provide a free trial in your home. WheelDrive is similar to Dual.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • amyjajamyjaj Member Posts: 17 Courageous
    atlas46 said:
    Hi @amyjaj

    A very warm welcome.

    Some insider information on NHS wheelchair services, based on advice of my sister in law, who has 15 years experience working as an Assistant OT.

    A referral is made by GP, to the wheelchair service, they arranges a home assessment, for a user needs assessment.

    At this visit, a further assessment can be triggered for social services OT, if adaptions are needed in the home (ramps).

    A specific wheelchair is agreed with service user and all pros and cons are discussed.

    A suitable wheelchair is then sourced, either from stock or purchase.

    The wheelchair is delivered by the assessor and basic use training is provided.

    The assessor will either arrange a follow up assessment or agree telephone contact at anytime.

    In no way whatsoever, what an assessor explain to someone with hemiplegic  CP, that a chair would be difficult to use.

    I would get in touch with your wheelchair service, to chase things up.
    I do find it strange that they would say that something that is  designed to be used  by someone with one arm  it’s difficult to use with one arm. Personally I think it’s because of the amount they cost as to why they don’t want to give them.  When I have my appointment with them I was going to ask about the voucher scheme!
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @amyjaj

    A little more insider information, this time from my time in the NHS.

    Budgets, that basically keep people out of acute NHS care, are always ringfenced.

    In simple terms, by supplying a wheel chair that may/could prevent hospital admissions in the future, is money well spent.

    I would suggest you press on with your NHS chair, then as a fall back consider the voucher approach.

    By the way, my sister in law, is currently on holiday in Sussex and is not responding to my calls. What is she up to with my bro!!
  • focusfocus Member Posts: 21 Courageous
    I tried one of these chairs at home and couldn't get on with it at all.  I now have to wait until July 24th for another assessment.

  • amyjajamyjaj Member Posts: 17 Courageous
    Would you know if I the nhs would issue vouchers or what have you if you have an assessment via a mobility retailer, or will I still need to have an assessment via hospital before hand. 
  • amyjajamyjaj Member Posts: 17 Courageous
    I’ve finally got an appointment with the wheelchair service.  11th July!
  • April2018momApril2018mom Member [under moderation] Posts: 2,869 Member [under moderation]
    amyjaj said:
    I’ve finally got an appointment with the wheelchair service.  11th July!
    Good luck!! Don’t feel afraid to ask questions. 
  • focusfocus Member Posts: 21 Courageous
    I had a date for my wheelchair assessment on July 24th which has now been brought forward to the 9th.  I'm hoping I can have an electric one as a self propelled is now too difficult to use.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I hope it goes well @focus and @amyjaj! Please do let us know :)
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  • amyjajamyjaj Member Posts: 17 Courageous
    focus said:
    I had a date for my wheelchair assessment on July 24th which has now been brought forward to the 9th.  I'm hoping I can have an electric one as a self propelled is now too difficult to use.
    How did your assessment go for you?
  • focusfocus Member Posts: 21 Courageous
    The lady that came out to see me was absolutely brilliant.  She said I definitely need a power chair. She took measurements of me and said she will speak to the necessary people and have me in for a fitting.  Now I just have to wait for the appointment which hopefully won't be too long.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    That's amazing @focus! Thank you for sharing this. I really hope you aren't waiting too long but this sounds so promising! :)
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  • amyjajamyjaj Member Posts: 17 Courageous
    I’ve just had my appointment with Wheelchair Service. An Invacare one arm drive wheelchair in purple is being ordered. Really easy to use!
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    This sounds great @amyjaj! You'll have to send us a picture when it arrives, even better that it's purple!
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  • amyjajamyjaj Member Posts: 17 Courageous
    Yeah, I joked that I didn’t want it looking too nhs!
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I hope it helps! I have hemiplegia so know how unsuitable a standard chair can be!
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  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    Make sure you post a pic @amyjaj :)

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • amyjajamyjaj Member Posts: 17 Courageous
    Make sure you post a pic @amyjaj :)

    I will. I’ll see if my friend can film me in it as i’ve Found that there is no videos out there showing how they work! 
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    That would be so useful! Great idea!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • amyjajamyjaj Member Posts: 17 Courageous
    Had the phone call this morning from the wheelchair service this morning. My new chair will be with me tomorrow!
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    That's amazing @amyjaj, I bet you're so excited! 
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  • amyjajamyjaj Member Posts: 17 Courageous
    I will be.  I could have done with it on Sunday really, but hay ho!
  • amyjajamyjaj Member Posts: 17 Courageous
     Let the driving lessons commence🤣
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    How are you getting on with the driving lessons @amyjaj?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • amyjajamyjaj Member Posts: 17 Courageous
    Still sussing it out!  Slops are are still difficult. I can wheel myself on pavement that couldn’t in the other one! Getting really fed up now with people stopping and asking if I need a hand!
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    It will take practice. What's the main issue with slopes? Going down them too fast? Or not enough power to go up them?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • focusfocus Member Posts: 21 Courageous
    Some good news, I have just received a call from wheelchair services and I have an appointment to try out some chairs on August 28th.  Cannot wait to get it sorted.

  • Adrian_ScopeAdrian_Scope Testing team, Scope community team Posts: 7,913 Scope community team
    Great news @focus. Glad to hear you're making some progress.
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    Scope

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    That's amazing news @focus! Thanks for letting us know :)
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  • April2018momApril2018mom Member [under moderation] Posts: 2,869 Member [under moderation]
  • focusfocus Member Posts: 21 Courageous
    Had my fitting for a power chair today, once it has been approved I have to go for training, and once it's delivered (which will take a couple of months) I will be ready to go.

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I bet you can't wait!! Did the fitting go okay?
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  • focusfocus Member Posts: 21 Courageous
    A rep from invacare was there with the lady from OT.  They were both brilliant. Can't wait to get it now.  Only downside is I have to change my car to accommodate the new chair.

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    That's great news about the chair!! Were they able to advise you about how to do this? Is it a motability car?
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  • Adrian_ScopeAdrian_Scope Testing team, Scope community team Posts: 7,913 Scope community team
    I'm glad you got on so well at the fitting today @focus
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  • focusfocus Member Posts: 21 Courageous
    Yes it is a motability car. Their suggestion was, if I am just going local (into town etc) use the power chair making sure it's fully charged or on long distance take my ordinary chair.
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