Read below our exclusive interview with Ivan Lewis, former Labour MP for Bury South (1997 to 2019) and the architect behind the National Framework for NHS Continuing Care.
For 14 consecutive years, from 2001 and 2015, Mr Lewis served as a Labour Minister and Shadow Minister in various positions including, amongst many other prestigious roles, Education and Health.
He was appointed Care Services Minister and served in this role between May 2006 and October 2008 under Prime Ministers, Tony Blair and Gordon Brown – a critical era which heralded the National Framework for NHS Continuing Care.
What is NHS Continuing Healthcare?
Ivan: It is described as a package of care arranged and funded solely by the NHS to meet physical and/or mental health needs that have arisen because of disability, accident or illness. Eligibility decisions for NHS Continuing Healthcare (CHC) depend on whether someone’s need for care is primarily due to health needs.
If they meet the eligibility criteria, then responsibility for paying for their care and accommodation rests with the NHS and is paid via a local clinical commissioning group (CCG) and is not subject to means-testing.
Otherwise, care may be funded by the local authority, through Adult Services, which is means–tested, failing which, the individual will have to meet the cost of care from their own private means.
The outcome of any decision as to which organisation (NHS or local authority) will fund care can have significant financial consequences for the individual being assessed.
Getting free-funded NHS care means that they do not have to contribute, while local authority funding may require a contribution towards the cost of care.
In default, private self-paying individuals may be expected to pay many hundreds of pounds, if not thousands a week for their own care.
How were funding decisions made?
Ivan: In 1995, formal guidance, NHS responsibilities for meeting continuing healthcare needs, was issued to both the NHS and local authorities, which left policy-making and drafting written criteria for NHS funded care to local health authorities.
So, decisions about care funding were placed with individual local health authorities around the country, using their own unique assessment criteria. That led to a wide disparity of decisions and inconsistency as to who may or may not get NHS Continuing Care funding – largely dependent on how their Strategic Health Authority undertook their own assessment process.
As each had their own criteria for eligibility, this created nationwide inconsistency in decision-making and outcomes – and what came to be known as the ‘postcode lottery’. Some local health authorities were more generous and were more inclined to award NHS funding whilst others were more restrictive and stringent in applying their criteria.
What was the assessment process like at the time?
Ivan: Given the above unilateral approach adopted by individual health authorities, it was chaotic, inconsistent, and perhaps overall unfair to those applying for NHS funding. Someone living in one Strategic Health Authority may be resolutely denied access to NHS funding, whereas a patient living down the road or another part of the country, falling under the auspices of another health authority but having very similar needs, might well be granted full funding for their care needs.
What do you think was the turning point?
Ivan: The Court of Appeal judgment in the Pamela Coughlan case in 1999 was clearly a pivotal point in the domain of NHS funding. This case replaced the 1995 guidance and contains core principles since adopted and incorporated into the Care Act 2014 and the National Framework, and are still relevant even today.
The case considered whether local authorities could lawfully provide nursing care for a chronically ill patient (Pamela Coughlan), or whether, by law, nursing care had to be provided 100% free as part of the NHS. The court found that, where an individual’s needs are greater than those which the local authority could be expected to provide i.e. the primary need is a health need, responsibility for providing care falls to the NHS, irrespective of the setting where the care takes place. Thus, the case established a dividing line between care that could lawfully be provided by the local authority and care that had to be provided by the NHS.
What happened next?
Ivan: There was some further guidance issued in 2001 to take into account the Coughlan judgment, but it proved too restrictive and still left too much room for local variation. More was needed to be done to give greater clarity as to situations when NHS funding had to be awarded.
What about Grogan?
Ivan: Coughlan was followed by the Grogan case in 2006. Mrs Grogan was repeatedly deemed ineligible on at least three prior occasions for funded care by the NHS, despite presenting with persistent chronic health needs at each assessment. She argued, as per Coughlan, that her needs were primary healthcare needs. The court found, amongst other things, that the NHS did not have – and did not apply – suitable criteria that identified the test or approach to be followed in deciding whether Maureen Grogan’s primary need was a health need; that their decision-making was fatally flawed; and the Primary Care Trust should have followed the Coughlan primary health needs test. The court found in Mrs Grogan’s favour and set aside the NHS’s decision that she did not qualify for NHS Continuing Healthcare and recommended that it reconsider her entitlement to NHS funding, in compliance with the Coughlan case.
Both Coughlan and Grogan are referred to in the NHS National Framework. Primary Care Trusts (now called Clinical Commissioning Groups) were mandated to review previous decisions rejecting or removing NHS funding to ensure that they were Coughlan compliant.
Why was the National Framework introduced?
Ivan: It wasn’t until 2004 that the Government decided it was time for a nationally consistent and coordinated approach to assessing and arranging Continuing Care. So, in an effort to standardise the assessment process for NHS funding and to clearly establish which side of the dividing line an individual’s care needs funding fell into, the Department of Health issued the National Framework for NHS Continuing Healthcare in 2007.
The aim was to create a comprehensive, single, streamlined set of national rules and guidance, in order to make decision-making and resolution of disputes more consistent and transparent. No longer would individual Strategic Health Authorities have their own rules to determine eligibility, but they would now be governed by a national tool for decision-making. These national criteria on care eligibility would have greater clarity and could be interpreted consistently. That meant that individuals with similar health needs should have confidence in a robust assessment (and appeal) process and consistent outcomes, regardless of where they lived, their diagnosis or personal circumstances.
The National Framework has since been updated in 2009, 2012 and more recently in 2018. With each revision, the National Framework has become more proscriptive, with better guidance to help both NHS practitioners and the public understand this complex assessment process.
In retrospect, are you pleased with the way things went?
Ivan: No doubt the concept of a National Framework was a significantly big improvement on how NHS assessments should be carried out. It streamlined the whole process, whilst educating those appointed by the NHS to represent them in the assessment process, and at the same time, gave guidance to the ‘mystical’ art of assessments and appeals. The intended outcome was to promote confidence and consistency, and fewer challenges to outcome decisions rejecting funding.
I was quoted in the Department of Health Press Notice, streamlining the system for NHS continuing care, at the time, as saying:
“Thousands of people in England are likely to receive more help towards their care costs.
The new National Framework for NHS Continuing Healthcare, published today, has been developed in close consultation with voluntary groups, professional bodies and patient/user groups and will make funding decisions on who is eligible for NHS continuing care fairer, faster and easier to understand.
It will create consistent access to fully funded care with clear national policies for deciding eligibility. It also abolishes different nursing bands for free nursing care – freeing up more time for nurses and cutting down on repeated patient assessments. The Framework will be put into action by the NHS and Local Authorities from October this year, and is expected to cost up to £220 million in the first year of operation….
We understand that families do have to make difficult and emotional decisions when someone has to go into residential care and this can be made worse by having to consider how this will be funded.
At present, people with identical care needs can receive different decisions on whether they are eligible for fully funded continuing care, based purely on where they live.
The new system will address these anomalies and will introduce one national system for everyone needing this type of care in England.”
How does the Government’s new social care cap of £86,000 impact on CHC?
Ivan: The cap has no direct relevance to NHS Continuing Healthcare funding as it relates to the provision of social care, which is means-tested. CHC, however, is provided by the NHS and is not means-tested. Quite simply, if you meet the eligibility criteria for CHC, the cost of your care and accommodation should be met in full by the NHS – free of charge – without having to contribute a penny! So before you are ever considered for social care, you should be assessed for CHC first.
CTBD comment: Thank you, Ivan Lewis, for sharing your thoughts with us.
We now have a more comprehensive rulebook setting out the CHC process, start to finish, but unfortunately, the job is far from complete. There is still work to be done to make improvements to ensure fairer and faster outcomes with more accessibility for families trying to get to grips with this unduly complex funding process.
The National Framework still remains open to subjective interpretation of the national guidance, and that in turn creates anomalies and inconsistencies nationwide. Sadly, the postcode lottery remains very much alive today as it did some 22 years ago when Coughlan was being debated.
For further reading around the subject, read these helpful blogs:
For more free resources and information about every aspect of CHC, visit Care To Be Different.
If you need help assessing your relative’s level of need in any domain on the DST, or advocacy representation at an MDT or appeal, don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.