Ciara, eight years old, from Bingham in Nottinghamshire, has Charcot Marie Tooth (CMT). CMT is a progressive condition which affects the nerves outside Ciara’s brain and spine.
Healthcare professionals told Ciara and her family that as her condition progresses she would need a wheelchair but they were also told that she did not meet the requirements for a powered wheelchair. Two years ago, when Ciara was six, her life was transformed as she received a powered wheelchair from Whizz-Kidz, on the very same day as her assessment, through the charity’s ‘Child in a Chair in a Day’ initiative.
Amanda, Ciara’s mum said:
‘We found the NHS staff very supportive to Ciara but the wheelchair that the NHS gave to my daughter was not suitable for her needs.
‘We understand that the NHS can’t move the goal posts for everyone, but there is simply no flexibility in the criteria for powered wheelchairs from the NHS, particularly for really young wheelchair users. Ciara fell outside the eligibility criteria for a powered wheelchair but her symptoms were getting worse as her sensory and motor nerves were deteriorating and she got tired very quickly. We tried to fundraise to buy our own, but it was like running uphill constantly and we soon realised it would take us years to raise the amount of money we would need.
‘Then our Neurologist suggested Whizz-Kidz to us. The team at Whizz-Kidz have been fantastic; everyone was really friendly and helpful. On the same day of Ciara’s assessment, her brand new powered chair was delivered to our home, it was fantastic.
‘Ciara loves her powered chair – we were all surprised at how efficient the process was and how amazing the equipment is. The chair was fully explained to Ciara including how to maintain it.
‘When Ciara is in her powered wheelchair she is completely independent, she can get in and go without worrying about waiting on everyone else. It gives us as a family a sense of freedom. She was never able to keep up with her friends, but that’s not a problem for her anymore.
‘I think that we are very lucky with our experience of local NHS services and the support we have been given. However, I do think that improvements should be made to access necessary mobility equipment and would suggest that an element of flexibility should be implemented. The NHS services must consider the practicalities of the young person’s condition and their life.’