Public concern fails to trigger a meaningful investigation.
In February 2019 our Health and Care team specialist Austin Thornton wrote a detailed Paper examining the underlying reasons for public dissatisfaction with the process of determining whether a patient is eligible for fully funded NHS support for their continuing care in the community.
Based on many years experience of pursuing NHS continuing care appeals, the paper concluded that the standard practice by which the "primary health need" test of eligibility is applied, is not in accordance with the NHS continuing care Framework and Practice Guidance or the main line of court authorities and in consequence is likely to be unlawful.
Inquiries into the workings of the NHS continuing care scheme have focused on the customer service aspects of the service rather than the legality of NHS practice. The issue of legality has largely been resisted by making reference to the existence of a National Framework for making decisions. But there has been no published research into the compliance of CCG eligibility decisions with the National Framework.
The House of Commons Committee of Public Accounts investigated following complaints received by MPs and reported in January 2018. The summary of the report is set out in the Box below.
Public Accounts Committee report: "NHS Continuing Care Funding" - January 2018 – Summary
NHS continuing healthcare (CHC) funding is intended to help some of the most vulnerable people in society, who have significant healthcare needs. But too often people's care is compromised because no one makes them aware of the funding available, or helps them to navigate the hugely complicated process for accessing funding. Those people that are assessed spend too long waiting to find out if they are eligible for funding, and to receive the essential care that they need. About one-third of assessments in 2015−16 took longer than 28 days. In some cases people have died whilst waiting for a decision. There is unacceptable variation between areas in the number of people assessed as eligible to receive CHC funding, ranging from 28 to 356 people per 50,000 population in 2015−16, caused partly by clinical commissioning groups (CCGs) interpreting the assessment criteria inconsistently. The Department of Health and NHS England recognise that the system is not working as well as it should but are not doing enough to ensure CCGs are meeting their responsibilities, or to address the variation between areas in accessing essential funding. NHS England wants CCGs to make £855 million of efficiency savings in CHC and NHS-funded nursing care spending by 2020−21, but it is not clear how they can do this without either increasing the threshold of those assessed as eligible, or by limiting the care packages available, both of which will ultimately put patient safety at risk.
A National Audit Office report was published in July 2017 raising a number of concerns. A summary of the report can be read here: https://www.nao.org.uk/wp-content/uploads/2017/07/Investigation-into-NHS-continuing-healthcare-funding-Summary-1.pdf
The full NAO report is here: https://www.nao.org.uk/wp-content/uploads/2017/07/Investigation-into-NHS-continuing-healthcare-funding-1.pdf
In February 2020 The House of Common Library published a briefing paper for MP's to assist them in dealing with enquiries from constituents. This is available here:
A UK Government & Parliament petition calling for a public enquiry into alleged mismanagement of NHS continuing care ran for 6 months in 2019 and attracted 10,632 signatures.
The petition and the government response (which denied that NHS continuing care is being mismanaged) can be read here.
Notwithstanding this work, in our view, justified public concern persists. The comments in Box B from an ex NHS Trust non-executive director are typical of the problems faced by the public navigating the NHS continuing care system.
The absence of transparency – a member of the public describes an appeal
"I wanted to write to say thank you for publishing your consideration of NHS CHC.
I am currently arguing for the provision of CHC for my Mother in Law who sadly passed away in April this year after 16 months in a care home. I had read the National Framework, the Decision Support Tool (DST) guidelines, the NHS Act, the Care Act, and could not understand why she would not qualify for continuing care.
Any normal person would consider her health condition to be complex and requiring ongoing health care. She had advancing dementia and had suffered two major fractures – neck of femur and spiral femur – the second of which she suffered in hospital recovering from the first. She went from living independently at 93 to practically immobile and unable to transfer without two carers. She had no knowledge of her condition, did not remember she had broken both legs, and had no risk awareness. The care she needed was caused by injury and was essential to prevent further illness and injury. Why would it not qualify for CHC? In my opinion it was illogical to even consider otherwise.
The first DST decided against the provision of CHC. I objected on the grounds that the DST was not conducted properly, and a second DST was established. They brought out the Rottweilers for this one and after my wife burst into tears and accused them of bullying, they did apologise but the decision was the same. I contested the outcome and an appeal was held which upheld the decision. I objected again and the Local Resolution Panel was this morning. I await the outcome but do not have much hope.
Your publication was fantastic in helping me prepare for the meeting. The four panel members were completely flummoxed by your arguments. They did not know how to react. Clearly, they have never had to deal with someone like me before and with your arguments to hand it was actually quite enjoyable. Of course, they resorted to the usual arguments as they had nothing else to offer. They do not even realise how they come across when they contradict their own rules. E.g. Not based on a condition, yet they use conditions to explain what would qualify.
I have little hope that I will overturn the decision and although I threatened legal action it is, as you identified, unlikely to be an option. I am a great supporter of the NHS. I spent 10 years as a Non-Exec Director on our local Acute Trust board. But I am becoming increasingly frustrated at the poor direction and ridiculous waste of resource. CHC is just another example of a part of the system that desperately needs fixing."
Whilst issues relating to the performance of NHS continuing care services are important to patients and their families, there would be less widespread concern if the written decisions and oral explanations were given clearly and referenced to the guidelines for decision making. But it is the opacity and apparent illogicality of decision making along with its obvious inconsistency with clear statements in the National Framework and Court authorities, (for example, "nursing assistant work is social care not health care") that is causing deep disquiet.
Until there is published a legally qualified audit of the compliance of real world practice with written procedure, dissatisfaction with NHS continuing care will continue to fill the post boxes of MPs and the system will continue to lack the credibility it needs when dealing with families and patients under stress and in need of support.
Originally published by Wrigleys Solicitors, September 2020
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