By Rosalind Hughes, founder, Just Caring Legal
What is the well-managed needs paradox when it comes to NHS Continuing Healthcare reviews? Here’s an example. L, 35, has profound learning difficulties, severe anxiety and uncontrolled epilepsy. This is as a result of botched treatment for a brain tumour when he was a toddler. He has a functional age of around 14 months and cannot communicate through speech or even gestures. He has lived in his current care setting for virtually the whole of his adult life. A care and support plan, funded by NHS Continuing Healthcare, provides 1:1 care around the clock to keep him safe and help him navigate his world.
What do well-managed needs look like?
L is totally reliant on a small team of carers who know him well and are familiar with the triggers and patterns of his behaviours. They anticipate all his needs, and support him in all aspects of daily living. They assess and manage risks for him, and provide skilled, immediate responses when the situation requires it. And they know the environmental triggers to avoid, to keep him on an even keel. These are well-managed needs.
Make no mistake: not just anyone can care for L. These people, like so many of this country’s carers, do a quietly heroic job. As a result, L’s challenging behaviours are these days mercifully quite rare. When he has a seizure, it scares him and he tries to literally run from it. Sometimes into doors, walls or other people. Fortunately, most of the time he can run to these carers whom he knows and trusts. They know what to do to physically and verbally reassure and comfort him. If that weren’t the case, he could put himself and others in serious danger.
Why is L’s care package up for review?
L’s mum has been profoundly affected by her son’s life journey. She has spent years working closely with the care setting to get the right care plan around him. She cared for him herself as a single mum for years, so she knows better than anyone what his needs are. Recently, the local NHS Clinical Commissioning Group (CCG) informed her that the care and support plan was up for review. The focus should have been to make sure that it was still meeting L’s needs. Instead, it became an exercise in looking for reasons to reassess L’s continued eligibility for the vital NHS funding that pays for his care.
The National Framework for NHS Continuing Healthcare, which CCGs must have regard to in all its processes, is clear. Only where there is clear evidence of a change in the person’s care needs since the previous full assessment should a review result in another eligibility assessment.
In our experience, however, these processes are budget-led, not needs-led. There is a laser focus on whether the person still presents a “primary health need”. (This is the bar someone must reach to qualify for NHS CHC. It is not about the reason why an individual requires care or support, nor is it based on their diagnosis. It is about the level and type of their overall actual day-to-day care needs.) Many reviewers will search out “evidence” that current care needs do not meet this high bar. Then they trigger another full re-assessment for NHS Continuing Healthcare. Ironically, the better the care someone is receiving, the easier it is for reviewers to argue they no longer need it. This is the “well-managed needs paradox”.
L’s small, familiar team was highly successful in preventing and de-escalating L’s anxiety and agitated behaviour. The reviewer argued that his behaviour-management needs had clearly reduced as there were fewer “incidents” in the care records. She did not stop to ask what would happen if his current level of care were withdrawn. What effect would this have on the level of “incidents”? Judging by previous experience, it would be catastrophic for L and everyone around him.
What does the National Framework say about well-managed needs?
The National Framework warns assessors that when undertaking NHS Continuing Healthcare reviews, they must take care not to misinterpret a situation where the individual’s care needs are being well-managed as being a reduction in their actual day-to-day care needs. But often this is precisely what does happen in NHS CHC reviews.
Does any of this sound familiar?
Clearly, the well-managed needs paradox makes no sense. And it is this sort of reality-bending that brings people to our door. Perhaps you have had your own experience of this special NHS CHC brand of common non-sense? You may feel you are living in a sort of parallel universe, where logic and reason no longer apply. If so, you are far from alone. Please get in touch and tell us your story.
We promise we are a nonsense-free zone. If we think your review is non-compliant, we will tell you how, and what you should do. If we don’t, we will tell you that too. And then we will do as much or as little as you like, from document review to full representation. So before you disappear down that rabbit hole – give us a call and let us give you a swift reality check on your case.