“Alfie will have a short life, so it needs to be his best life. Every minute needs to count. That goes for so many children with rare life-limiting conditions. Parents and children have enough to deal with without problems like this one. We should be able to trust the Government to support us.”
Alfie is eight and has muscular dystrophy. He is unable to use a self-propelled wheelchair due to muscle weakness and therefore relies on his powered wheelchair to give him the freedom and independence to live his life.
Alfie’s father, Joe, is his biggest advocate, helping to ensure that his son’s powered wheelchair safeguards his physical and mental health while giving him the independence, dignity and freedom he needs to live a fulfilling life. Alongside the Wheelchair Alliance, Joe is calling for the Government to act now when it comes to the guidance on powered wheelchairs.
“From my son’s position, there are a number of issues that are critical. There is a complete absence of any reference to children in the document. My son will be disproportionately impacted if these regulations are enforced.”
Joe also highlights that his son is currently driving a non-class chair as if it’s a class 2 chair, which, according to the guidance, means that he can’t drive on ‘pavements or any other pedestrian areas’.
However, he’s also not legally able to drive on the road, as at eight years old he cannot get a driving licence.
“He can’t drive an off-road chair because they are all class 3 and the regulations are really targeted at heavy adults, looking at unladen weight and not laden weight. There are no suitable chairs that comply with the regs - he is a criminal in the eyes of the law.
“This situation needs to be sorted out quickly before a child ends up being sued or prosecuted. It needs to be sorted out so that the regulations allow children to use their current chairs, both ‘class 2’ and ‘class 3’ off-road.”
Joe is also concerned in the change in emphasis from ‘highway’ to ‘pavements or any other pedestrian area’ within the updated guidance.
“The latter is so vague, it’s impossible to tell if that applies to places like schools, hospitals or shops.
“When he passes his NHS power chair assessment, he will be offered a chair described as class 2 but, because of its higher rated batteries, it will be over the weight limit and therefore non-class.
“And if we buy him a suitable off-road chair (one that will work on surfaces such as mud, sand and snow) it will be a class 3 (or non-class if you read the manufacturer's specification weight). However, he can’t drive a class 3 or non-class chair as he is only eight!”
The guidance also stipulates that class 3 chairs cannot be driven until age 14. However, Joe feels that not being able to access the woods and other outdoor spaces that Alfie often uses, for the next six years, is something he feels is unacceptable for his son, especially as the chair they have looked at is already used by many children like him.
Indeed, Joe feels he has been put in a position where he has to choose between complying with the law or allowing his son to live his life.
“As the parent of a child who could lose all of his independence if the government gets this process wrong, I’m concerned that this guidance could potentially prevent all medical power chair users from leaving their houses, stop them going to work, from shopping, from accessing education, from using any pedestrian areas, from going for a ‘walk’ with loved ones, even going to hospital - this list goes on and would impact every area of a power chair user’s life.”