More than 100 families looking after severely disabled adults and children outside hospital, have told the BBC that the NHS is failing to provide enough vital support.
The NHS says help is based on individual needs and guidelines ensure consistency across England and Wales. However, some families describe the system as adversarial.
Only those living outside hospital with life-limiting conditions, or at risk of severe harm if they don't have significant support, get this help from the NHS.
It is provided through a scheme called Continuing Healthcare (CHC) for adults, and its equivalent for under-18s, Children and Young People's Continuing Care.
Cases in England are decided by NHS Integrated Care Boards (ICBs) - panels responsible for planning local health and care services. In Wales, they are overseen by local health boards.
The BBC has heard from 105 families who described serious concerns with how the two schemes are working - with most calling for reform.
One young man with 24-hour needs hasn't received any CHC help despite being eligible since February 2023 - his parents, who first applied for support on his behalf nearly two years ago, currently provide round-the-clock care
Another family were told overnight care for their teenage child - who is non-verbal, has severe mobility issues and requires 24/7 support - would be reduced from seven down to three nights a week, without a reason being given.
Source: BBC News, 14 February 2024
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