Mother Faces Recurring Costs for Daughter’s Vital Mobility Equipment

A mother is facing an annual expense exceeding £1,000 to maintain essential equipment for her daughter, who lives with a rare disorder. Kayley Burns, from Consett, County Durham, had previously raised £20,000 to purchase the Innowalk device, which is not currently available through the NHS, to enable her daughter Amelie to walk. Made for Movement (MfM), the supplier, stated it was “unfortunate” that the health service did “not recognise its unique technology” and mentioned that it offers payment plans to customers. The Department of Health has been contacted for comment. The NHS North East and North Cumbria Integrated Care Board (ICB) commented that for individuals with long-term complex needs, “each situation is individually assessed.” MPPH syndrome, which impacts brain development and restricts movement, is believed to affect fewer than 100 people globally. Ms. Burns described the device as “life-changing” after medical professionals suggested it could help her 14-year-old daughter walk and regain some independence. “It helps her legs stay strong, it’s also helped her hips that could easily dislocate which could mean a cast and operation for weeks, so it’s basically saved her life in the sense of how she lives it,” she said. Ms. Burns has had the equipment for two years and stated she was informed that she must cover the cost of its warranty and servicing, which includes home visits from staff to ensure it is properly adapted for her growing daughter. “It stresses you,” she said. “It makes you feel like you’re not a good mum, you can’t meet her needs, it destroys your heart.” The family had already paid for other necessary modifications in their home, and Ms. Burns added that she had “begged” the government and health officials to consider funding the Innowalk for Amelie and other children in similar situations. Stephen Kirkpatrick of MfM stated that the company was “dedicated to supporting families” but noted that its aftercare came “at a cost that a small organisation cannot carry alone.” He explained that the firm understood “the annual support package costs can be a significant financial burden to families” and offered various support packages. “It is unfortunate that the health service does not yet recognise our unique technology as a highly impactful and important piece of equipment,” he said. Ann Fox, the ICB’s interim executive chief nurse, said the board recognized Amelie’s family was “doing all they can to provide the very best care.” She added that those with a family member with long-term complex needs “may qualify for free health and social care which is arranged and funded by the NHS and each situation is individually assessed.”