Viewing 12 posts - 1 through 12 (of 12 total)
  • #202556
    Powerchairs for young teens

    Hi, my Son is 13 years old and currently uses a permobil K450 powerchair. He has a congenital myopathy and has had spinal rods since the age of 6 years.
    The permobil is now too small, however the chair supplied by our local NHS is an adult chair which he does not find comfortable. We have been told that Permobil do not offer anything with enough support for his needs. Its difficult as he is very mobile in his upper body and side transfers from his chair. He goes to mainstream school and loves being able to play football with his friends.
    We are stuck in a stale mate situation, he is refusing to use the NHS chair which is too big, but we are being told by the OT that his posture needs more support>

    Has anybody else been in this position? Any advice would be most welcome.
    Many thanks.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #202559
    Reply To: Powerchairs for young teens

    I wonder if OT have any advice. Clearly a change is needed, and they and you have recognised this. They have the resources to answer this question I would have thought. AAre the ones available to OT a limited selection because of budget constraints?
    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #202562
    Reply To: Powerchairs for young teens

    This sounds like its budget linked. Its unlikely that the NHS chair cant be tailored to fit him now. More likely they don’t want to spend the money on the custom fit. NHS Chair services are narrow minded in ability. They only want to cater for a fixed solution which isnt right for more active ability. Making your son too fixed in chair will reduce his mobility ie way he transfers now.

    What is his NHS chair? Am I right the NHS probably discouraged flip up arms for easy side transfers?

    Have you contacted Permobil?

    Seating is a very personal choice and linked you the persona activity outcomes. OT should be working with you to find a middle ground. Its very important for your son to maintain his active upper body ability as in just 3 years he may possibly want to learn to drive and the right seating solution is so important.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #202570
    Reply To: Powerchairs for young teens

    Hi thanks for your advice its spot on!
    My Son side transfers and they have fitted one flip up arm on the side he transfers. I have spoken to permobil to arrange for the current seat to be adjusted but its pretty much at its maximum. He is very upright and does not want to be in a moulded seat as this would restrict his upper mobility, he loves to play football and basketball with his friends. He is very attached to his permobil which I totally understand , its been with him since he was 6 years old.

    The NHS chair is an Aviva RX20

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #202573
    Reply To: Powerchairs for young teens

    Ask the tech at Permobil if another brand of seat system can be added. I just got a chair and the back rest was too curved. I changed it to another brands cushion which is flat rather than a curved straight jacket.

    the Aviva must be on sale for NHS. friend of mine just got one and his looks too small. one size seems to be fits all.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #202574
    Reply To: Powerchairs for young teens

    Hi, yes I get the impression the Aviva is the chair of preference. It is an adult chair though and Ethan is not a particularly big 13 year old.

    I will contact permobil as I now have to attend a meeting next Tuesday with the Physio, OT and school to try and resolve this situation.

    I have so many more questions to ask, I am feeling a bit overwhelmed at the moment.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #202575
    Reply To: Powerchairs for young teens

    As usual I suspect bulk buying is used as a method of bringing down costs. Very welcome of course but one size does not fit all, and in this case, literally. I really do hope that your forthcoming meeting will find a solution for you. Please do let us know. I wonder if this one size fits all is a breach of “duty of care” in not respecting patients as people and not numbers?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #202576
    Reply To: Powerchairs for young teens

    Ah yes that’s a very good point and one which I will raise at the meeting. Thank you that is helpful. Is there anything else I should say?

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #202577
    Reply To: Powerchairs for young teens

    I wonder if OT have any advice. Clearly a change is needed, and they and you have recognised this. They have the resources to answer this question I would have thought. AAre the ones available to OT a limited selection because of budget constraints?
    Mike

    So many love songs, so little love.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #202578
    Reply To: Powerchairs for young teens

    I think first and foremost you need to demonstrate that there is a suitable chair available in which case the refusal to supply becomes a financial one and not a care decision. Then the picture becomes more clear. I would also suggest you bring together any medical information you have that may show the effect having the wrong chair and seat will have on him, in there I would also include physiotherapists evaluations. Educational comment may be useful if it can also demonstrate a deleterious effect on his education. Including comments from your MP may be valuable but I think time is too short for that.
    I am aware he is to young to get PIP but does he get any other money that could be used for his mobility? If so it may well be said that that money could be used towards a new chair.

    I hope these help. If not please do come back to me.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #202581
    Reply To: Powerchairs for young teens

    I find it confusing that they gave him odd arms on chair. Surly matching flip up arms should have been given. Cant always guarantee which side you will need to transfer in a public loo. I get off left side. my chair is turned and I transfer loo left side so the right arm must then be lifted up.

    Buzz words:- its often about phrasing.

    Ethan needs this size and chair functions to prevent risk and vulnerability. This … would enhance his independence and quality of life. This…. reduces and restricts his ability to self or assisted transfer.

    The fixed restrictive seating will deteriorate his core control more as he is too confined and restricted. He needs to be able to self support and mobiles in chair while he can to promote this core ability longer.

    You as his parent dont feel that the Aviva is the correct chair for needs as its an adult chair and proportionally incorrect to his frame. Ask for testimony how they came to assess and supply this specific chair.

    Both Invacare and Sunrise medical do small adult and teen chairs but will be less battery than an adult chair. Both this companies have very good seating solutions that can be adapted as years go on.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #202582
    Reply To: Powerchairs for young teens

    Permobile are crazy expensive which is likely why NHS wont fund as Ethan is getting closer to adult services.

    Have you considered approaching the Joseph Patrick Trust the MDUK charity fund for funding for a chair?

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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