Disabled adults and children are being denied the care they need from the NHS.
BBC reports suggest that NHS continuing healthcare has failed numerous families.
The system makes funding available to those with life-limiting conditions or people at risk of severe harm who live outside of a hospital.
More than 100 families come forward
The BBC reports that it has heard from more than 100 families caring for severely disabled adults and children who are not getting enough help from continuing healthcare.
Last year Alex Spencer, whose son Declan, 24, died of a muscle-wasting condition, told how she struggled to obtain the support she needed through continuing healthcare.
People with disabilities are not getting the support they need from the NHS. Image by Kevin Phillips
Spencer, from Leicestershire, told how at one point she had to stay awake for up to 60 hours to care for her son due to gaps in his support.
Fighting for years
Jeremy is an expert by experience on NHS independent care and treatment review (CTR) panels.
These are meetings for people with learning disabilities and autism who are either in a hospital or at risk of being sectioned.
Jeremy, from Bromsgrove in Worcestershire, fought for several years to get his autistic daughter Bethany, 24, out of hospital and living in the community again.
He said families who are given budgets to buy their care, either through continuing healthcare or via direct payments from a local authority, often end up struggling to get the support they need.
Staff shortages lead to struggle
Jeremy, 57, said staff shortages across the sector mean families often have to struggle alone.
He said decisions take place about funding someone’s ongoing health needs without checking if the support is available.
He added: “You can say, ‘This person needs X, Y and Z,’ but if that doesn’t actually exist as a provision, there seems to be no way of securing that provision.”
‘Robust process’
A spokesperson for the Department of Health and Social Care released a statement. It said local care boards determine who qualifies for continuing healthcare.
And there is a “robust process” for appealing against continuing healthcare decisions, the spokesperson added.
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