02/06/2026
CCFTV is supporting families that continue to face huge emotional and practical struggles when trying to secure NHS Continuing Healthcare funding for a loved one with complex needs.
Too often, families are left trying to evidence what is already in front of services: that their loved one’s care needs are not simply social care needs, but health needs requiring proper assessment, recognition and support. In one recent case seen by Care Campaign for the Vulnerable, a family raised repeated concerns about their mother, who was living with dementia and experiencing weight loss, continence issues, anxiety, changes in behaviour and increasing care needs. During a period of respite in a care home, she began to improve. She gained weight, appeared calmer, was eating and drinking well, taking medication appropriately, engaging with staff and seemed more settled.
For the family, this was important evidence. It showed that with the right level of 24-hour care, support, prompting, nutrition, continence care and professional oversight, their mother’s wellbeing improved. Yet the family still found themselves having to push, question and advocate for his needs to be properly understood.
This is what so many families face. They are not asking for special treatment but for fair assessment, clear communication and recognition of complex dementia care needs. Families often become exhausted trying to navigate NHS Continuing Healthcare, Decision Support Tools, care assessments, social care input, mental health services and local authority processes. The language can be confusing, the system can feel fragmented, and families can feel as though they are being passed between services.
When a person is losing weight, requires continence support, needs prompting to eat and drink, has dementia-related anxiety behaviours, requires medication review and benefits from 24-hour care, families should not have to fight to have those needs taken seriously.
Care Campaign for the Vulnerable believes families must be listened to, evidence must be properly considered, and NHS funding decisions must reflect the true level of need. NHS Care England