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NHS continuing healthcare – Judy’s huge success story

This is a success story about joined up thinking, and the importance of seeing clients, patients, people, as unique individuals with unique needs.

As a nurse with over 30 years experience, I am often instructed to represent families in continuing healthcare assessments and appeals. Having worked in continuing healthcare myself, I understand the fundamental importance of clinical judgment when considering an individual’s eligibility for this funding. But at a time when the NHS needs to save over £800 million in this area a considered, professional analysis is often abandoned in favour of a line by line application of the National Framework. After all, it’s so much easier to decline eligibility when you don’t join up the dots.

Mr X’s case

Mrs X instructed me in early 2017 to appeal the withdrawal of NHS continuing healthcare funding for her husband who had until this point been funded for a number of years without any problems. Mr X has advanced Parkinson’s disease and Lewy body dementia. As a result he has significant physical and cognitive impairments which are both complex and time consuming to manage.

The first appeal

Following a detailed analysis of his care records, it became apparent that the odds of success at an appeal which adopted the ‘line by line’ approach to understanding his needs would be doomed to failure. Put bluntly, the notes were wholly inadequate in the way they recorded Mr X’s needs, with superficial and even missing entries. Nonetheless, it was clearly evident to me from a clinical perspective (joining up those dots) that his day to day care needs were overwhelmingly health related. With evidence from Mrs X and a legal analysis by Debbie Anderson we put together a compelling submission…which was (like so many appeals) rejected by the Clinical Commissioning Group who refused to overturn their original decision. Despite the fact that I was half expecting their refusal, this decision was hugely disappointing. That Mr X’s needs, despite the poor record keeping, ‘scored’ highly in the twelve domains was not enough(sound familiar?). In a rationale that batted away any idea that Mr X’s needs were complex, intense or unpredictable, no one on the appeal panel appeared to be looking holistically at the very nature of his needs.

This appeal was fundamentally a disagreement about what constituted a primary health care need. The rationale used by the Clinical Commissioning Group at the assessment and the appeal reinforced our view that the second part of the DST assessment (‘the characteristics of health needs’) which considers nature, intensity, complexity and unpredictability is the deal breaker in terms of deciding eligibility in all but the most straightforward cases

What is a primary health need?

You need to have a primary health need in order to be eligible for NHS continuing healthcare funding. Whilst there isn’t a definition, the National Framework says that “an individual has a primary health need if… can be said that the main aspects or majority part of the care they require is focused on addressing and/or preventing health needs”.

For more details visit our CHC webpage

The second appeal

Whilst the appeal process was clearly taking its toll on Mrs X she remained determined to continue to the next stage; independent local resolution. Not only does this involve compiling further evidence based submissions (but really, how many different ways can we say ‘primary health need’?), Mrs X and I were invited to attend and contribute to the subsequent panel meeting.

And lo! Real people applying real clinical judgment was the order of the day. Dots were joined and importantly Mrs X (and I) felt listened to. Even though we didn’t know that we were successful when we left we felt that Mr X’s case had been fairly and comprehensively heard by professionals who were independent of the original assessment and appeal.

The letter I received confirming that we were successful included a rationale from the panel that considered and gave value to the nature of Mr X’s needs and the relationship between those needs. As a result, Mr X is now going to be refunded almost two years of care fees, plus interest. He also remains eligible for NHS continuing healthcare…and we will be ensuring the care records are up to scratch for the next review

If you need help or advice on issues relating to NHS continuing healthcare, you can speak to a member of our Health & Community Care Team today by emailing: or calling 01926 354704

Judy Timson


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