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Elections 2021: ‘Parents shouldn’t have to fight for child’s care’

The mother of a disabled boy has said she believes he is being failed by the social care system.

Zach, 10, from Mansfield, has multiple life-limiting conditions, including learning disabilities, sensory processing disorder and intestinal failure.

He also has a central line – a tube connected to a large vein near his heart – which provides him with vital fluids and medication.

Despite having continuous care needs, Zach faces a wait of up to a year for essential new equipment, according to his mum Tricy.

“His bed isn’t suitable. He’s damaged his central line three times,” she said.

Together For Shorter Lives, a charity which supports seriously ill children and their families, said it has seen an increase in the number of calls from parents who are struggling to access continuing healthcare, while children’s services in England have been described as being “woefully underfunded” by the Association of Directors of Children’s Services.

Laurence Jones, service director, commissioning and resources in children and family services at Nottinghamshire County Council, said the authority was “sympathetic” towards Zach’s situation.

“We strive to ensure that children and young people receive the support they need. We are providing ongoing social care support for which the county council is responsible and regularly assess to ensure this is reviewed as the child’s needs change,” he added.

A spokesperson for NHS Nottingham and 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 system in education and social care to ensure that the needs of children with complex conditions are met.”

On 6 May across England millions of people will be voting for new councillors, mayors and police and crime commissioners. Register to vote here.

Video journalist: Alex Thorp

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