A New Trike for Edward
Edward is a 14-year-old boy from Buckinghamshire with Cerebral Palsy. This summer AFK funded a brand-new specialist trike for him, to enable him to go out on bike rides with his family and to ride around the park independently.
When applying to AFK, Edward’s mother stated that the biggest reason for wanting a specialist trike for Edward was that it would enable him to learn and build his independence. With a custom trike built specially to meet his unique and individual needs, he could to go out and move around on his own whilst building both his muscle strength and his confidence. Edward’s trike allows him to build muscle tone in a controlled and fun way and will help him improve his walking skills, a goal of both his and his family’s.
Edward’s mother has gotten in touch a few times since his trike has been delivered, stating how beneficial the trike has been, both for his independence and his mental health. ‘Thank you so much for putting a smile on my son’s face. He is over the moon with his trike.’
Harry sees his new Powered Wheelchair for the First Time
Harry is a 12-year-old boy from Leicestershire. He is very sociable and bright and enjoys meeting new people and doing new things. He also loves the outdoors and going out to do activities such as visiting the zoo.
Harry has Cerebral Palsy and is profoundly deaf. He is a full-time wheelchair user and needs support with all his daily needs and activities. His family applied to AFK for a specialist powered wheelchair as his previous NHS manual chair was not suitable for his needs. Harry’s family said that having a powerchair would help him build his independence and allow him to engage in fun activities that he couldn’t in his manual chair. With a riser on his chair, he would be able to lower or raise his chair when visiting the zoo, to see the animals more easily.
Harry’s chair was delivered at the beginning of July. Harry’s mum Sam got in touch to say: “It’s brilliant! He took it to school for the last 3 days of term and the teacher said it’s life changing. He can be lowered right down for story/carpet time so he can be on the same level as his friends instead of towering over them. For the first time ever he has been able to sit at the table & be pushed completely underneath so the carers can sit opposite him. He looked around & looked so happy. The teacher said he was looking around like he was just like everyone else now!!! It’s brilliant we can’t thank you enough!!!”
The photo above is Harry’s face when his new powerchair was being delivered and he saw it for the first time.
Sam's New Chair and AFK Advocacy
Since graduating from university with a BA in journalism, Sam has been volunteering in the PR department of a local disability rights charity and his hoping to secure paid employment. He enjoys visiting different places and trying new activities, and particularly enjoyed attending a cultural inclusivity programme in Oregon a few years ago.
Sam has Duchenne Muscular Dystrophy, a muscle wasting condition that affects his mobility. At 23, he is no longer weight bearing and is a full-time wheelchair user. When we first spoke with Sam, the powered wheelchair he was using was privately funded by his family as the NHS was not able to provide an appropriate chair that met his needs. Whilst it was suitable for many years, as his condition progressed it was no longer offering enough comfort or postural support and had become unreliable. Sam applied to AFK for funding for a Permobil powerchair in October 2018.
We informed Sam that he could be considered for an NHS wheelchair voucher to be used towards the cost of his chair. He was unaware of this and expressed concern that he didn’t think it was possible to get this voucher soon enough as his initial assessment was not due for several months. AFK approached the wheelchair service on his behalf and over the course of many emails and calls, we were successful in persuading them to offer an urgent assessment, given the discomfort his chair was causing. After arranging the assessment, our Mobility Advocacy Manager spent time with Sam and his mother talking through the issues they needed to raise with the wheelchair service. It was important to ensure all his needs were covered during the assessment as that would affect the outcome of the voucher value. Because of this work, Sam secured a voucher of £3420 to be used towards his new powerchair.
AFK also provided advice to Sam about his choice of supplier. The supplier he had a quote from was not one we had worked with before and we were surprised they wanted full payment of the powerchair before delivery. AFK encouraged Sam to have a reassessment with a supplier we know well and work with regularly. After his assessment, he contacted us to say he preferred to use the supplier we recommended as the engineer was very accommodating and listened to his needs. The quote from this supplier, for the same chair, was much cheaper and resulted in a saving of £3509.
Sam and his mother are delighted with the progress AFK made in securing a voucher and a chair at the best possible price. Due to our advocacy work and Sam’s own individual fundraising, we were able to order Sam’s chair two months after he applied to AFK, with his chair being delivered 2 months after that. Further, we were able to ensure that the wheelchair service was providing adequate and appropriate support to Sam for his specific needs. This, plus the supplier discount, allowed AFK to save £6,929 to be contributed towards other vital equipment for disabled children and young people.
Sam got in touch to say, ‘I have definitely noticed an improvement from a postural and comfort point of view. With the better suspension and smoother tyres, it will improve my overall driving experience and positioning in the chair. It has long battery life so can be used when out and about for long periods of time without worrying about losing battery (different to my previous chair)’. AFK’s support, not just financially but in terms of the advice, has gone a long way to helping me get this wheelchair. I really do appreciate the assistance, as getting funding in place and the right chair can be a long and complicated process. I am also grateful to you recommending Recare as a supplier. I couldn’t fault how they’ve dealt with me as a customer so far, with their regular visits and commitment to making me comfortable in the chair.’