No longer should you need to sell your house to pay for your care or give up work to be a carer for a relative, spouse or friend as a result of incompetent or flawed NHS Continuing Healthcare assessments. The principles behind this statement are sound, so why aren’t they being applied? Why are so many thousands of people still being compelled to sell their home to pay for their care needs? How has society come to this malaise and what can be done to rectify the problem?

Where the problem started: The background

In 2002, regional health authorities were renamed and merged to form 28 Strategic Health Authorities (SHAs). Each SHA had its own governance and responsibility for running and commissioning local NHS services. With its own autonomy, too, each SHA had its own assessment criteria and interpretation of what healthcare needs qualified for Continuing Care i.e. the long-term NHS funding of elderly and disabled patients (usually living in care homes with nursing). Continuing care funding meant that an individual’s social and healthcare needs were paid for in full by the NHS, free of charge and without any form of means-testing – to meet the overriding principle of ‘free care at the point of need’.

Unfortunately, this autonomy delegated to SHAs, produced a disparate range of inconsistent outcomes across the country, which became dubbed the ‘postcode lottery’. Success or failure was entirely in the hands of your local SHA and how they chose to apply their own assessment methods and criteria. As a result, therefore, your chance of securing free NHS funded care largely increased or decreased simply by virtue of where you lived.

There was a general misunderstanding as to what criteria qualified as healthcare needs and what should be funded free of charge by the NHS (i.e. free at the point of need), and what needs fell into social care needs, which were to be funded by the local authority and be subject to means-testing (ie you might have to contribute to the cost of your care needs).

What happened to change all this?

The Court of Appeal decision in the Pamela Coughlan case [1999], was the foremost landmark decision that started the path of change. It was the precursor that eventually led to the creation of a nationwide, consistent approach when applying assessment criteria for Continuing Care.

In short, the Coughlan judgment established that where a person’s primary need is for healthcare, the NHS is responsible for the full cost of the placement and care package (i.e. healthcare and social care needs and accommodation). Only if the individual’s need is not primarily for health care – i.e. not the responsibility of the NHS – may consideration be given to whether local authority social services could purchase nursing care in very limited circumstances (and pass the cost to the individual) whose healthcare needs are:

(i)  merely incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide; and

(ii)  of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide.

So, the Coughlan case was fundamentally instrumental in clarifying the legal distinction between healthcare and social care needs and providing a clear boundary line as to which body has responsibility for providing (and paying!) for the individual’s care.

What’s happened since Coughlan?

Following the Coughlan court decision, SHAs and Local Authorities were mandated to consider eligibility for Continuing Care, by first applying the ‘primary healthcare needs’ test before any financial assessment and consideration should be given to means-tested local authority funding.

But how easy was it for Strategic Health Authorities to follow Coughlan?

In 1999, following the Coughlan case, the Department of Health issued guidance which asked health and local authorities to satisfy themselves that their continuing care policies were in line with the Coughlan Judgment. However, confusion and incorrect circular guidance that followed, only contributed to the blurring of boundaries between healthcare and social care needs.

Whilst trying to co-operate, some SHAs still failed to ensure that their eligibility criteria and assessment methods were operated in a Coughlan compliant and compatible manner. Some SHAs wrongly thought that Continuing Care was only available if the individual was at end of life or receiving palliative care.

The confusion continued to result in many vulnerable people with chronic, but stable healthcare needs, mistakenly being passed over to their local authority (and means-tested assessments) and their families still being forced to pay for healthcare (typically from the sale of their home), which should have been the NHS’s responsibility to fund free of charge.

Despite the Coughlan Judgment, there was still widespread inequality and injustice. Something had to be done to rectify the situation and reimburse those individuals who had been the victim flawed and inconsistent assessments. Many thousands had wrongly been forced to pay for their care that should have been provided free by the NHS.

The emergence of national assessment criteria

However, in February 2005 Ann Abraham, Health Service Ombudsman, reported to the Select Committee on Health* that there were still significant delays in carrying out retrospective reviews; difficulties of interpretation of the eligibility criteria; systemic flaws in the way retrospective reviews were being carried out; and delays in making restitution payments to those found eligible for Continuing Care funding. Although it was recognised that there had been improvements, standards still fell short of the mark and healthcare professionals needed more guidance, training and support in this difficult area.

She said, “In more than half of the cases my Office examined we found that the assessments had not been carried out properly. The problems included poor quality clinical input to both assessment and decision making, inadequate documentation, failure to consider changes in a patient’s health care needs over time, and lack of involvement of, and poor communication with, patients, carers and relatives.”

Sadly, these issues still resonate as much today as they did over 15 years ago when the Abrahams report was made. So, has anything changed?

The Birth of the National Framework for NHS Continuing Healthcare Funding (‘National Framework’)

There was a growing demand to rectify the financial hardship and injustice caused to families by an evident failure to understand what Coughlan was all about and impose adherence to, and application of, the Coughlan case.

There was a distinct need to create a clear, transparent, comprehensive and comprehensible, user-friendly, national reference tool to ensure fairer and consistent assessments for eligibility and robust decision-making; a national tool:

  • Which could stand up to scrutiny and eradicate the postcode lottery and differential treatment of individuals across the county;
  • That incorporates a standard set of agreed competencies for those carrying out the assessments, with proper training and a uniform approach to fairly compensate those who had suffered injustice and wrongly been denied NHS funding where the eligibility criteria, or the way they were applied, were not clearly appropriate or fair;
  • That would remove delay and move to a quicker decision-making process and eradicate unsafe decisions and abuse or process;
  • Give practical guidance that could be understood and applied in easy practical steps by healthcare professionals, patients and carers alike.

And so, the National Framework for NHS Continuing Healthcare was born, and with it followed the abolition of Strategic Health Authorities on 31st March 2013. Thereafter, responsibility for compliance with National Framework rested with local Clinical Commissioning Groups (formerly Primary Care Trusts).

Benefits of the National Framework for NHS Continuing Healthcare:

The National Framework is a single national set of eligibility criteria that came into effect in 2007, known as the ‘National Framework for NHS Continuing Healthcare’ – so that individuals whose primary need is a health need, could receive fully funded NHS care no matter where or in what setting they live (e.g. whether in their own home or a care facility or hospice etc).

The National Framework incorporates, integrates and amalgamates the current best practice, guidance, protocols, process and assessment tools; issues best practice and clearer guidelines to make the eligibility assessment process easier to understand and to operate; and introduces a consistent approach and response to improve the public’s understanding of eligibility, and of the assessment process.

The National Framework for NHS Continuing Care and NHS-funded Nursing Care 2018

Since its introduction in 2007, there have been further updates to the National Framework in 2009 (renamed: The National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care) and again in 2012, and more recently in October 2018. Each version has sought to make improvements to the assessment process and compliance with the underlying Coughlan principles.

The latest version of the National Framework does provide greater clarity for NHS assessors, professionals and individuals involved in the assessment and appeal process. For example, the 2018 edition of the National Framework specifically incorporates the Care Act 2014 and reliance on the Coughlan Judgment. It reconfirms the boundary lines on the care that a local authority can lawfully provide and what care is the responsibility of the NHS. It also reinforces the duty on the health and social care authorities to carry out proper assessments for NHS Continuing Healthcare first, before there is any mention of how the care will be funded.

However, at Farley Dwek, as legal practitioners fighting for justice for our clients, the National Framework is still deficient in many areas and much more still needs to be done to perfect the model. There is still inconsistency in interpretation and approach, and sadly the postcode lottery is as much alive today as it was back in the 1990s. Individuals are still being denied Continuing Healthcare funding through flawed or incorrect NHS assessments and being subjected to inordinate delays in processing retrospective appeals (now exacerbated by COVID). Some delays can result in claimants passing away before the matter is resolved and restitution repaid. Homes and assets are still being sold, and hard-earned life-savings are being eroded just to pay for care, which should have been paid for in full, free of charge by the NHS, had a fair and sound assessment been carried out in the first place (indeed, if one took place at all!).

Whilst the 2018 National Framework is certainly a vast improvement on the pre-Coughlan era, unfortunately, post-Coughlan, and since its introduction, the Framework has been criticised for perpetuating confusion and inconsistency. There is a need to create a fair and robust system that works for practitioners, and yet gives families confidence that their relative’s case has been assessed fairly, properly, and expeditiously.

To achieve greater consistency and reduce the financial misery and stress caused to families by incorrect decisions where funding has been wrongly rejected or withdrawn, there needs to be more training of NHS assessors, greater transparency when applying the National Framework, less room for subjective interpretation of the rules and guidance, and the perceived scandal of financial gatekeeping. Admiral Philip Mathias has publicly called the misery foisted by the NHS on individuals who have been let down by the system and flawed assessments as, “probably the biggest financial scandal in the history of the NHS.” The winds of further reform are brewing…

Read our recent blog Admiral Philip Mathias blog:
Admiral Mathias Continues His Fight For Justice For Families Who Missed Out On NHS Continuing Healthcare Funding

We hope that the next revision of the National Framework addresses these concerns and more.

For further background reading as to historical issues and the evolution of the National Framework, read:

Memorandum by The Law Society (CC 35)

*Memorandum by the Health Service Ombudsman for England (CC 23)

Memorandum by the Department of Health (CC 9)

Farley Dwek Solicitors work with a team of specialist nurses who have all spent many years working within the NHS, specialising in Continuing Healthcare Assessments. Together, we can offer you expert advice and professional advocacy support. You don’t need to fight this battle for NHS funding alone. Visit our website for more information as to the wide range of expert services we offer you at every stage of your assessment or appeal.

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