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  • FIRST POST
    • Adiraf
    • By Adiraf 7th Nov 18, 8:49 AM
    • 3Posts
    • 0Thanks
    Adiraf
    Abandoned
    • #1
    • 7th Nov 18, 8:49 AM
    Abandoned 7th Nov 18 at 8:49 AM
    Hi,
    Not sure if anyone can help, but any advice or support will be gratefully received . I am currently stuck in a standoff with Opcare and the CCG in regards to a suitable wheelchair.
    My daughter has LGMD. Almost ten years ago, recommended by the consultants in partnership with a charity, helped us acquire a wheelchair which would allow her to function and give her independence, the NHS chair couldnít provide. For instance the function to recline, tilt , elevate legs etc.
    I donít want to bore you so i will summarise. Over approximately five years ago I realised the chair would eventually come to the end of its functional life and asked Opcare for a reassessment for a new chair.
    We attended several appointments because we wanted to make sure everything would be just right since the postural seating she had on her chair provided by Opcare was unsuitable and altering her posture for the worse. Four years later the chair arrived, it was heartbreaking almost as if we had ordered a pair of shoes and when they arrived they were the wrong shape and size. We kept an open mind and had different therapists coming in and making adjustments. Unfortunately Opcare wasnít able to retain its staff for whatever reason. We wanted the chair to work so we went along with it. Unfortunately the chair was unsuitable and I had to increase my daughters morphine so she could tolerate eventually things came to a standstill. The side affects of the medication and the pain induced by the chair was too much , it affected her university studies drastically.
    The solution was to go back to her private chair, which overtime I have stripped, replaced parts but now it has reached the end of its functional life and is becoming obsolete.
    Since May it has broken down many,many times leaving my daughter bed bound and desperately withdrawn.
    Opcare since have been extremely unhelpful they changed her postural seating and made it even worse. I had to remove it immediately as it was a safety risk, yes you guessed after several appointments it was the wrong size, shape, sigh... They are refusing to listen to us and things have sadly come to a stand still. This year is my daughters last year of university and it seems every thing is going against her. She commutes from home and puts in 110% not accepting defeat. I must admit I am exhausted and extremely worried when her chair gives out there is nothing there to replace it, just her bed. We have tried to raise funds for the new chair, even currently crowdfunding, but we have along, long way to go.
    Thank you and well done if you got to the end of this page.
Page 1
    • pmlindyloo
    • By pmlindyloo 7th Nov 18, 10:08 AM
    • 12,005 Posts
    • 13,830 Thanks
    pmlindyloo
    • #2
    • 7th Nov 18, 10:08 AM
    • #2
    • 7th Nov 18, 10:08 AM
    Forgive me but are you saying that you still have the chair provided by Opcare but are not using it as it is unsuitable? Plus, Opcare have not been able to correct things for you?

    (sorry, just sidelined about raising funds for a new chair - is this in order to buy a chair from another place?)

    Seems to me that this is a consumer complaint. You have received something that is unfit for purpose. I am assuming that you have officially complained, involved CCG and got nowhere?

    Since this appears to have gone on for a long time I would personally be getting my MP involved and maybe taking this to your local newspaper. (This could also help with raising funds if you prefer to go to a different company)

    Have you tried approaching other charities for help? If you go to www.turn2us.org.uk I believe they have a grants section.

    I have the feeling that you have lost all faith in Opcare so privately funding a chair may be the most sensible approach although official complaints about Opcarer's services should also be made since the NHS should know of their failings.
    • Adiraf
    • By Adiraf 7th Nov 18, 10:22 AM
    • 3 Posts
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    Adiraf
    • #3
    • 7th Nov 18, 10:22 AM
    • #3
    • 7th Nov 18, 10:22 AM
    Hi,
    Thank you for the reply. The chair provided by Opcare was taken back to their storage area. When my daughters private chair broke down in May , we asked to use the Opcare chair as a substitute, so she could at least sit up and eat. I ended up collecting it with a the headrest and charger missing and was told by the engineer he couldn’t do anything about it.
    The therapist at Opcare told us trying to get money out of CCG is like getting ‘blood out of a stone’ therefore raise our own funds. She promised to help us by writing to the CCG and giving her professional opinion, however actions speak louder than words. I can understand she didn’t want to jeopardise her employment with them.
    We tried the charity route and unfortunately when you turn 21 the help becomes sparse.
    My daughter is currently still studying against the odds, I do wake up everyday dreading the phone call her chair has broken down in a public place. The fear is exhausting and taking a massive toll on the family. I take on all hours available to try and raise the funds but unfortunately the breakdowns take out chunks of money for repairs.
    I have approached anyone and everyone I can think off, Health watch, MP’s ( ours is currently on maternity)
    It just feels like we’ve been abandoned and a basic need which we take for granted is being ignored and our screams silenced.
    • kingfisherblue
    • By kingfisherblue 7th Nov 18, 12:55 PM
    • 8,122 Posts
    • 17,580 Thanks
    kingfisherblue
    • #4
    • 7th Nov 18, 12:55 PM
    • #4
    • 7th Nov 18, 12:55 PM
    I can't help with your query, but there are some potential funders in these links. Although some are for children, others include adults.



    https://www.bettermobility.co.uk/charity_funding_options.php


    https://www.disability-grants.org/grants-for-wheelchairs-two.html


    http://allterrainwheelchairs.co.uk/funding/


    https://www.ridc.org.uk/content/charities-help-get-powerchairs


    http://www.draftwheelchairs.com/information/links-to-funding-possibilities/
    • sheramber
    • By sheramber 8th Nov 18, 1:38 PM
    • 5,453 Posts
    • 4,093 Thanks
    sheramber
    • #5
    • 8th Nov 18, 1:38 PM
    • #5
    • 8th Nov 18, 1:38 PM
    So Opencare need money from the CCG(NHS) to provide a suitable chair but that money is not forthcoming.
    • Adiraf
    • By Adiraf 8th Nov 18, 7:26 PM
    • 3 Posts
    • 0 Thanks
    Adiraf
    • #6
    • 8th Nov 18, 7:26 PM
    • #6
    • 8th Nov 18, 7:26 PM
    Both are not fore coming. They both seem to be holding their purses tightly and waving the buzz word ‘budget’ around. However it would be interesting to know how much money is actually being spent on wheelchairs and equipment?
    We have come a long way in terms of technology and other major advances, however in the last 70 years NHS has made very little progress in terms of disability and providing equipment people need. It’s wholly unfair and demoralising.
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