The mother of a disabled boy said she believes the welfare system failed him.
10-year-old Zach from Mansfield suffers from several life-limiting illnesses including learning disabilities, sensory processing disorders and bowel failure.
He also has a central conduit – a tube connected to a large vein near his heart – that supplies him with vital fluids and medicines.
According to his mother, Tricy, Zach has to wait up to a year for important new equipment despite constant care needs.
“His bed is not suitable. He damaged his center line three times,” she said.
Together For Shorter Lives, a charity that supports critically ill children and their families, said there has been an increase in calls from parents struggling to continue receiving medical care, while childcare in England has been described as “sad” was underfunded “by the Association of Directors of Children’s Services.
Laurence Jones, director of services, assignments and resources for child and family services at Nottinghamshire County Council, said the agency was “sympathetic” to Zach’s situation.
“We strive to ensure children and young people get the support they need. We provide ongoing social support that is the responsibility of the county council and we regularly check to see if the child’s needs change,” added he added.
A spokesman for the NHS Nottingham and the Nottinghamshire Clinical Commissioning Group (CCG) said: “We cannot comment on a patient’s individual case. However, the CCG always works in partnership with colleagues across the education and welfare system to meet the needs of the patient To ensure children with complex conditions are met. “
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Video journalist: Alex Thorp