What is NHS continuing healthcare (CHC)?

This page covers:
• What continuing healthcare (CHC) funding and funded nursing care are
• Ways people found out about CHC
• Experiences of applying for CHC funding

Leigh talked about making sure her foster son has a choice regarding fertility preservation and how access to it was uneven across local authorities in England.

Some of the people we spoke to described their experiences of applying for NHS continuing healthcare funding, otherwise known as CHC.

If someone is eligible for NHS continuing healthcare, then the NHS pays for their social care whether that is in a care home or at home. CHC funding is only available for some people with long-term complicated health needs and there are strict eligibility criteria. If someone is not eligible for CHC funding, they might still be eligible for NHS-funded nursing care if they live in a care home that provides nursing care.

Rafi and Iram suggest that as well as collecting information from participants they need to provide the study answers.

Teresa has been part of a birth cohort study for 74 years. She thinks the study team have communicated very well with her. She knows what’s going on with the study and who to contact.

Gender Female

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Some people were told about CHC funding by a care worker or another professional but others, like Hannah, heard about it by chance from talking to relatives of people who had CHC funding.

Lucy believes cohort studies are important for collecting large amounts of data to discover patterns which will help to inform our understanding of medical issues.

Age at interview 30

Gender Female

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Brian can’t remember a re-consenting process in his birth cohort study and doesn’t think it was particularly necessary because he was involved already and never thought of not doing it.

Age at interview 73

Gender Male

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People told us they were confused about how long CHC funding would last. As Andrew explains, the name suggests it will continue forever, but in fact people are re-assessed and may stop being eligible. This means people may have to start paying for their care again and so need to plan for this.

Jess hasn’t heard anything from the birth cohort study team since primary school, but she doesn’t mind, and she assumes they didn’t need to follow her up.

Age at interview 67

Gender Female

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People who are at the end of their lives can be fast-tracked through the assessment process but this can still be reassessed if the person’s health stabilises.

Leigh said the school was supportive but did not understand they had no right to let all the parents know that her son was trans.

People also told us that applying for CHC funding was a long and difficult process. They described having to be strong, to fight for CHC funding, to ‘keep on’ at the professionals and to know the right words to use.

A researcher came to Brian’s house for an hour to carry out physical and memory tests for the birth cohort study. One time, he had to stand on one leg and stand up on a chair.

Age at interview 73

Gender Male

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Lucy says she feels comfortable taking part in medical studies as long as it’s nothing particularly sensitive or intrusive or dangerous.

Age at interview 30

Gender Female

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CHC funding can save people a lot of money because the NHS supports the cost of healthcare. The assessment is carried out by a team of health professionals who look at multiple factors to do with health and care needs. But carers were confused about why some people were funded and some were not, even though their circumstances seemed the same or a person given CHC funding seemed very wealthy. For Andrew, the care home staff had different opinions about whether his mother would be eligible.

Anne can’t remember joining a birth cohort study, and it was many years later that she received some information in the post from the researchers.

Age at interview 68

Gender Female

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Linda attended an event to mark a milestone for a birth cohort study. She found it interesting talking to other participants and reflecting on their upbringings.

Age at interview 65

Gender Female

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People found out about CHC funding in different ways and at different times. Although CHC funding can be given to people in their own homes, all but one of the people we spoke to had applied for it for a relative living in a care home.

Brian feels confident that the researchers protect his personal information. He is reassured by studies being run by well-known organisations.

Age at interview 73

Gender Male

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