Published: July 19, 2019

'Our life savings are spent on care that should be free'

Tell your Vulnerable Loved Ones About Continuing Healthcare(CHC)

Thousands of vulnerable patients in England are missing out on NHS funding for care that they are legally entitled to, it is being claimed. Some families say they have spent nearly all their life savings on filling the gaps.

When 83-year-old Joyce Bryant became ill two years ago with viral encephalitis, it was a tipping point. The illness left her with a substantial brain injury and unable to care for herself.

"Her behaviour was just manic," says her daughter Lyn Timothy. "She was banging on windows. She was hitting out at my dad, pulling plugs out of the sockets in the hospital ward."

The family decided additional support was needed to enable Joyce to stay at home with her husband and applied for funding from NHS continuing healthcare (CHC).

CHC covers the cost of social care for people with complex medical conditions, if the health problem is deemed the main reason they require such help. It exists in a similar form in Wales and Northern Ireland, where it is delivered by health boards. Scotland has different care arrangements called Hospital Based Complex Clinical Care.

But despite clinical documents and videos showing Joyce's "unpredictable behaviour" - those who apply are judged according to national guidelines - the family's local Clinical Commissioning Group (CCG) found her needs did not meet its criteria.

"They said her behaviour was not unpredictable. It could be anticipated," Lyn says, adding she is unable to understand its rationale.

Her mother is now confined to bed and has been placed on an end-of-life care register by her GP due to a deterioration in her health.

Every year about 160,000 applications are made for continuing healthcare, costing the NHS around £3bn.

The system has been deemed a "national scandal" by Continuing Healthcare Alliance as it is denying many people the free healthcare they are entitled to. Some are dying before they get the care they need or are forced to sell their homes to pay for care that should be free.

In other cases people did not know about the existence of the funding, as they had not been told about it, or had difficulties "navigating the complexities of the system"


Leymar Healthcare provide Homecare Services in Ashfield and 24 Hour Live in Care in the UK to vulnerable adults in their community. Please contact our office on 01623 360 193 or email us at

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9th September 2020

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