If you’re in full-time care – in your own home or in a care home – and you receive Registered Nursing Care Contribution (RNCC), make sure you’re ALSO assessed for NHS Continuing Healthcare.
NHS Continuing Healthcare covers 100% of your care fees. RNCC is a small monthly benefit that covers some nursing care. They are two different things.
When you need care you should be assessed for NHS Continuing Healthcare first – not the other way round.
Read more about paying care fees.
Continuing Care Case Study no. 2
This timeline shows the dates and stages of the case I pursued on behalf of my father to secure NHS Continuing Healthcare funding. Read a short summary of his health needs first.
This battle took nearly two years. It was slightly easier than the one for my mother, because, as time passed, I’d learned how the UK care system worked. I also new that all my letters and arguments had worked, too.
Everyone’s situation is different, but winning this case for Dad showed me that my own experience and practical know-how could now help others in a similar situation.
June 05: My father went into a nursing home for full-time care. At the time his fees were £500/week. Social Services gave me some forms asking about Dad’s financial situation. I knew Dad would hate the thought of me divulging his personal financial data. I knew he had some savings and, like many people, I simply assumed he’d have to pay for care, so I didn’t send back the forms.
Aug 05: The NHS assessed Dad as needing the low-rate band Registered Nursing Care Contribution (RNCC), which covered just a fraction of his Care Fees. (Today there is only one band for this.) I didn’t know anything about this at the time, and I’d not been informed about any care assessments, nor indeed any need for an assessment. After three months he was supposed to have another review. This did not happen. There was also no care assessment at all for NHS Continuing Healthcare.
Apr 06: The NHS confirmed that Dad would continue to receive RNCC at the low rate. There was still no assessment for NHS Continuing Healthcare. At this stage I was just beginning to read more about NHS funding and the way that elderly people are denied the care funding they’re entitled to.
Jan 07: My father deteriorated hugely in terms of his mental health. In many ways I felt he was no longer the father I’d known.
Apr 07: I spoke to the care home GP about an anti-psychotic drug I discovered my father was being given. I was very conerned about it and his deterioration had coincided with him taking it. The GP said she’d take him off the drugs, but I later found out Dad was still being given them.
Aug 07: Dad’s nursing needs were increasing, but still no one had done a proper assessment for NHS Continuing Healthcare. I wrote to the NHS asking for one – and asking why this had not been done before.
Aug 07: The NHS confirmed Dad had ‘erroneously’ been assessed for RNCC instead of NHS Continuing Healthcare. They said that the lack of care assessments had been an ‘oversight’ and ‘lack of resource’.
Sep 07: My father was assessed for NHS Continuing Healthcare. The assessor put considerable pressure on me to sign her notes afterwards. I refused – and I wrote on the notes that I had simply attended the care assesment and was not agreeing to any subsequent interpretation of those notes by the NHS.
I received no communication or paperwork from the NHS for two months.
Oct 07: The UK government introduced the new ‘National Framework for NHS Continuing Healthcare’ in England. In theory, this was supposed to introduce a single care needs assessment procedure for all PCTs to follow, to end the postcode lottery for care fees funding. In practice it still left room for assessors to apply their own subjective ‘interpretation’ and opinion to the eligibility criteria.
Nov 07: I wrote to the NHS to chase the result of Dad’s previous assessment.
Nov 07: I received a copy of the assessment. It said Dad needed a further care assessment, the notes from which would be put to an internal PCT panel. I realised that this initial ‘assessment’ had probably been a ‘filtering’ process – the ‘Checklist’ – a extra layer in the assessment process that is designed to identify who needs a ‘full’ assessment. (Many families feel that the Checklist is actually designed to filter people out, not in.)
Nov 07: A PCT review panel met to consider the nature, complexity, intensity and unpredictability of Dad’s health needs.
Dec 07: The panel decided he was ‘ineligible’ for NHS Continuing Healthcare. However, no mental health nurse had been involved in the assessment and yet this is supposed to happen. The assessment result clearly stated that my father had more ‘health’ needs than ‘social’ needs – and yet he was still found ineligible.
I realised that everything seemed to be skewed to show that, because Dad’s care was in a care home and not in hospital, his needs were defined as ‘social needs’ in terms of funding, when in fact they were health needs. His healthcare needs were about the damage to his brain from his various illnesses and (in my personal view) also from medication.
Spring 08: I received several bills from Dad’s local council totalling thousands of pounds. The bills said they were for care, however Dad did not owe any money to the Council. I queried the bills and the Council agreed they were incorrect and that they would issue a credit note. No such paperwork was ever forthcoming. Given the cost of care, many people might have simply paid such bills, believing that they were correct. Although this was an administration error, it served to further reinforce to me what a mess the care system in the UK seems to be in.
Mar 08: I wrote to challenge the ‘ineligible’ decision and to claim a refund of all care fees Dad had paid since Jan 07. Jan 07 was the date from which I believe he had the best chance of being refunded. In hindsight I should have claimed from the very first day he went into care.
Apr 08: I wrote again. Dad was becoming increasingly ill.
Apr 08: I received a reply from the NHS countering some of my points. The NHS suggested yet another care assessment and yet another PCT Review Panel, this time involving a mental health nurse.
May 08: I wrote to the NHS again, countering further argument they had presented, and I requested an assessment on a weekend, because of the increasing cost to me of taking time out of work. I was self-employed.
June 08: I received a letter to say the assessment could only be on a weekday. It had taken a whole month for the NHS to tell me that!
Late spring 08: Dad had been having various tests and scans for worsening urology problems.
2 Jul 08: Another assessment (a ‘needs portrayal’ using the Decision Support Tool) was done. It’s not unusual for the main input into an assessment to come from just one nurse or carer from the care home (who may not actually know the patient very well at all). It means the assessment may be based on second hand information from a hastily-kept care plan at the care home, and it is evaluated by NHS people who also don’t know the person being assessed. The ‘Chinese whisper’ effect leads to inaccuracies in information and incorrect decisions being made – right from the outset.
July 08: My father was told he had terminal kidney cancer.
Dad seemed to fall into a black hole as far as the NHS was concerned. There was no communication at all from the hospital about his cancer. I rang the consultant’s department frequently, but the phone was never even answered. The care home had no information from the hospital either. No one seemed proactive or bothered at all in helping my father deal with the shock of the diagnosis or looking at what lay ahead in terms of what the cancer meant, how it would develop, what that would mean for him towards the end and how long it would take. Nothing.
If my father had been at home or in hospital with such a diagnosis, the NHS would have had to act. Instead, he seemed to have been wiped off the map because, a) he was in a care home, b) he was old.
The local hospice made contact, though, and that was the first time I felt anyone at all was willing to help. One of the hospice nurses spoke to a GP on my behalf, asking the GP to recommend NHS Continuing Healthcare.
End Aug 08: I wrote a very angry letter to the hospital, but I didn’t send it in the end. I was losing the will. I couldn’t believe that, even now, I was still having to fight for nursing care funding on his behalf – and that he was still paying every single penny of his nursing care.
End Nov 08: A PCT review panel looked at Dad’s case again.
Dec 08: I received a letter to say that the NHS would refund his care fees from Jan 07 onwards.
19 Jan 09: I sent in my claim for £76,000 (care fees (£60,000) + compound interest @ 8% + costs). The costs included the costs of sale of my parents’ house plus other costs in connection with the NHS’s illegal decisions.
9 Feb 09: I received a letter from the NHS stating that they would not be reimbursing any costs. Department of Health guidelines clearly state that the NHS must return a person to the financial status they enjoyed before NHS errors occurred. Empty words.
5 Mar 09: I received a letter from the NHS offering to refund £61,000 – this was £15,000 less than Dad was owed. They asked me to sign and return a form with my agreement. I did not agree to their calculations. I said they could send the bulk of the refund, but that I would pursue the rest.
Early Mar 09: I was still waiting for the refund. I did a TV interview to talk about the whole issue of illegal care fees.
23 Mar 09: I wrote to the NHS stating that I would be pursuing the money through legal channels.
16 Apr 09: I received a letter from a firm of solicitors acting on behalf of the NHS saying that they would be handling all communcations with me from that point onwards. (At what cost to the taxpayer?) The letter stated that my father had been adequately reimbursed. (I had still not actually received any refund at all for him.) It also said that I had not been forced to sell his home to pay for care. This was completely wrong!
The letter also said they had decided to pay me £500 for any inconvenience. It was an insult – and I knew they were trying to get rid of me.
May 09: I finally received a cheque for the lower amount of the refund for Dad. The NHS posted it to my father at the care home instead of to me. Dad was not physically capable of opening or reading his own post. The care home had a policy of not opening residents’ post, nor telling relatives what had arrived in the post. A carer put it in his fruit bowl and it was only by chance that I found it the next time I visited my father. What a ridiculous situation.
17 May 09: I wrote an angry letter back to the Finance Department at the NHS, listing an ongoing catalogue of errors in their procedures and in their communication.
18 August 09: I received a letter from the NHS solicitors stating that the cheque was in full and final settlement and defending their decision not to pay costs and to use a lower rate of interest. They suggested I think very carefully before taking any further action.
A couple of weeks later my mother died.
Six weeks after that my father died.
In the shock and grief of the situation, I no longer had the energy to reply – something, perhaps, the NHS relies on. I have still not agreed that the refund was ‘full and final’ settlement, but I have decided to direct my energies into helping other families pursue the NHS care funding they are legally entitled to. It is, if you like, a way of forcing the NHS to pay up for other people. I consider my father’s case still open.
Watch her TV interview about NHS Continuing Healthcare on our YouTube channel.
Continuing Care Case Study no. 1
This timeline shows the dates and stages of the case I pursued on behalf of my mother to secure NHS Continuing Healthcare funding. Read a short summary of her healthcare needs first.
This case took nearly three years. They were long years because, at first, I didn’t know how the care system worked, and I didn’t realise that the information the NHS and the local authority were giving me was wrong. As I became increasingly aware of this, it meant I had to research every step.
June 05: Mum went into a nursing home. At the time her fees were £500/week. Social Services gave me some forms to fill in, asking questions about Mum’s money and house. I felt this was a violation of her personal affairs, and I also simply assumed that, because she did have some assets, she’d automatically have to pay for care. So I didn’t send back the forms.
Aug 05: A nursing care assessment was carried out by the NHS – but I knew nothing about it. The care assessors had got my dad to sign it to say he agreed it had been conducted properly. He neither knew about it nor understood anything about it – and he was in full-time care in the same nursing home and had dementia. It was scandalous.
The kind of areas the care assessment looked at for Mum were behaviour, cognitive ability, communication, mobility, nutrition, continence, breathing, skin, medication, psychological/emotional issues, etc. They noted whether she had ‘No needs’, ‘Low needs’, etc. – all the way up to ‘Severe’ and ‘Priority’. The various ‘scores’ would indicate whether she was eligible for NHS Continuing Healthcare.
Oct 05: Assessment result – this stated that she was ‘ineligible’ for NHS Continuing Care. It struck me that to have had enough ‘points’ to be eligible for NHS care, she’d have had to be nearly dead.
2006: I put my parents’ house up for sale – BUT the buyer’s survey showed that the property had subsidence and no buyer would be able to secure a mortgage on it. This was devastating news. It took me a whole year after this to get the insurance company to even agree to cover the structural repairs.
However, the stress led me to start reading up on the NHS and illegal care charges.
April 06: Another nursing care assessment was carried out, but all the care assessor did was add a few comments to the previous one.
June 06: Care assessment result – this stated Mum was ‘ineligible’ for NHS Continuing Care.
Sep 06: I sent my first letter to the Primary Care Trust (PCT) suggesting that Mum was being wrongly charged for long term care. I asked for a review.
Oct 06: I requested evidence of all previous care assessments carried out for Mum, together with details of the Continuing Care Assessment criteria used. I received copies of the assessment notes, but no evidence of how the funding criteria had been applied.
Nov 06: Another nursing care assessment was carried out. I received the PCT’s notes from the care assessment and was asked to comment.
Dec 06: I submitted my response, picking apart all the inaccuracies and holes in the assessment. My response was to be put to a local PCT review panel, but this was scheduled for the last day before the Christmas holidays. I objected vehemently as I was unable to attend and I also felt that Mum’s case would not be given proper consideration that day. The PCT agreed to review it again in January.
Jan 07: As promised, the local PCT reviewed it again. The result stated that Mum was still ‘ineligible’ for NHS Continuing Healthcare. However, there was still no evidence that the assessments had been properly carried out.
During 2007: Extensive repairs began on Mum’s house.
Jan 07: I requested that an Independent Review Panel (IRP) examine the decision to deny care funding. The IRP was an independent tribunal, carried out at the Strategic Health Authority (SHA). Yet another care assessment was carried out by the local PCT, but no date for the IRP was forthcoming. I wrote to the SHA to find out what was happening.
Apr 07: I’d heard nothing. I filed a formal complaint with the Healthcare Commission, but they responded saying they could help only once I’d got past the IRP stage. Catch 22.
May 07: I filed a LONG complaint with the NHS. My key points including the lack of consideration of Mum’s health records and her health needs, misinformation and distortion of facts in the assessment notes, verbal intimidation towards me by an NHS member of staff, inconsistent information from one assessment to the next, lack of a proper multi-disciplinary team at the care assessments, failures in procedure, lack of care provision for someone with Parkinson’s Disease, as prescribed by NICE (National Institute for Health and Care Excellence), etc.
July 07: I chased the SHA again about the tribunal date. They said they had no idea when a date might be available. The SHA seemed to be able to take as long as it liked. Meanwhile all Mum’s money and assets were being taken away from her.
Oct 07: I knew I would probably need to take legal action, but I was not in a position to fund this myself. Even though I held a Power of Attorney for Mum, it seemed that if I wanted to use some of her remaining money to cover legal fees, I would have to get additional permission from the Court of Protection. I obtained the relevant forms to apply for this permission.
As part of this I had to get some Mental Capacity forms completed, to show that Mum was not able to fight for herself. However, because she had fallen into a black hole in the care home, as far as the wider NHS was concerned, there was not a single GP who knew her well enough to be willing to sign the forms for me. It meant I couldn’t apply to the Court of Protection.
Oct 07: Mum ran out of money and I was still unable to sell the house. The small amount of cash she had left was already over-committed to pay for essential physiotherapy, ongoing house maintenance and repairs not covered by insurance. I wrote to Social Services to say they would HAVE to help us.
Oct 07: I contacted the Healthcare Commission again. On account of the SHA’s lack of response about the tribunal date, they suggested fast-tracking Mum’s case to the Health Ombudsman.
Nov 07: I cancelled the direct debit to the care home to pay the care fees; there was no more money in the bank.
Dec 07: Social Services sent me more forms to fill in to apply for emergency funding (Temporary Financial Assistance). The local Council slapped a legal charge on Mum’s house, yet sent me no information about it, nor any terms of such a charge, even when I requested them. (Because my father was also in full-time care, he could not protect the house by living in it.) I wondered if this ‘legal charge’ was in fact legal.
Dec 07: The care home said they would now be pursuing me personally for care fees. This was now about £2,500/month for Mum (and about £5,000/month for both Mum and Dad). This was a real low point. I felt utterly alone in my fight.
Apart from one person at Social Services, who provided some help at a couple of later assessments and put forward some points that would help Mum’s case, NO ONE in any position of authority ever expressed any empathy or any willingness to help me.
Dec 07: The NHS did a very hurried re-assessment of Mum’s needs. It seemed to be a ‘back-tracking’ exercise and meant they could ‘tick their box’ to say they’d ‘followed procedure’.
14 Dec 07: I finally I got the date for the independent tribunal (IRP). I pulled together every bit of information I had – plus all my correspondence plus a letter from Mum’s former neurologist who had (fortunately) agreed to see Mum at my request. (Mum had previously been taken off his patient list because she was apparently ‘too ill’ to warrant seeing him.)
I put together a written and verbal submission for the tribunal. Although I put forward my case myself, I took a solicitor friend from Kingsley David Solicitors with me to the hearing. He added information about the key legal precedents and points of law to support me. It was good having him there and I believe it helped show how serious I was about this. I had also taken him with me to one of Mum’s previous assessments (you can take a solicitor with you, but the NHS will not discuss points of law in assessments), so he could see what sort of process was followed. Again, though, I put forward my points myself.
The IRP looks at the whole process of assessment for NHS Continuing Healthcare on an individual basis and, as the name suggests, it’s meant to be independent. However, when I arrived at the hearing I was very unnerved to discover that, of the panel of 5-6 people, at least 2 were from the NHS.
However… the tribunal decided that the NHS had previously not assessed Mum properly for NHS Continuing Healthcare, and that the decision to find her ‘ineligible’ for funding was illegal.
The NHS had been trying to get away with just paying Registered Nursing Care Contribution. The NHS had said that Mum’s needs were ‘simple and basic’ and that they were not healthcare needs. This had now been proven wrong.
Late Dec 07: I received the final letter from the IRP to say that they were ordering the NHS to refund all care fees paid from April 06 onwards. I put together a claim was for £46,000 (care fees + physiotherapy + interest @ 5%).
My claim then turned into a debt collection exercise.
Feb 08: I asked a solicitor friend to write a letter chasing up the refund.
March 08: £45,000 was refunded – but with no paperwork, statement or breakdown. Very shoddy. Physiotherapy fees were not reimbursed.
9 April 08: I wrote again myself to ask for paperwork to show why the cheque had been less than I’d claimed.
9 April 08: I wrote questioning why there had been no refund for physiotherapy.
30 Apr 08: The NHS Continuing Care Office said it was now a Finance Department issue. However the NHS did instruct the care home to bill them for all future physiotherapy for Mum.
May 08: Mum’s house was finally sold. Very emotional. I was told I’d have to pay back Social Services for all the emergency funding.
June ’08: I wrote again to the NHS asking for a breakdown of the refund.
June 08: I wrote again chasing the physiotherapy refund.
June 08: The physiotherapy fees were finally reimbursed.
15 Aug 08: I wrote to the NHS again for a breakdown of the refund.
End Aug 08: I finally received a letter stating that the NHS uses a different process to calculate interest – one that results in a lower amount of interest being repaid than is usual for this type of debt.
Sep 08: The NHS wrote to tell me they’d paid me £2.58 too much. Needless to say I completely ignored it…
If I hadn’t won my case at the IRP stage, my next step would have been the Parliamentary and Health Service Ombudsman and the Court of Appeal. I would have had no hesitation in pursuing this, as it was clear by this time that the NHS was in the wrong.
This means it can be very difficult to predict who will and won’t be able to access the care funding.
To help you get an idea of the health needs under consideration in each case, read the health summaries below before clicking through to each case study.
Read about her successful claim for NHS Continuing Healthcare.
Read about his successful claim for NHS Continuing Healthcare.
Read about landmark legal cases for NHS Continuing Healthcare.
It’s for people who are assessed as having a ‘Primary Health Need’.
NHS Continuing Healthcare is also known as ‘Continuing Care’ or ‘Fully Funded NHS Care’.
Over the last 9-10 years we have been contacted by over 1,000 families needing help navigating the Continuing Healthcare funding system. Many have never been told about NHS funding by the health and social care authorities, and yet the NHS has a duty to promote this funding.
Listen to the BBC’s File on 4 programme: ‘Continuing Healthcare – The Secret Fund’, broadcast on 18/11/14. It highlights some of the problems families experience in the funding assessment process.
It covers 100% of care fees for people who need full-time care primarily for health reasons, i.e. they have a Primary Health Need. It’s available whether you’re in a care home, in your own home, in a hospice or somewhere else.
It doesn’t matter whether you’re in a residential home or a nursing home, the same rules apply: It’s about your health needs first, not where you live or how much money you have.
The landmark Coughlan case, reinforced the difference between health needs and social care needs.
If you have healthcare needs and you need full-time care, you should have a Continuing Healthcare assessment. NHS guidelines and the Standing Rules Regulations require local Clinical Commissioning Groups (formerly Primary Care Trusts) to assess anyone who appears potentially eligible for Continuing Healthcare.
However, many people find that they are assessed first by the local authority, to test their financial means.
If your local authority does a means test before you’ve been assessed for NHS Continuing Care, it can put the local authority in a potential unlawful position. Why? Because your care needs could be beyond the local authority’s legal remit for providing care, and you could end up wrongly paying. A Continuing Healthcare assessment needs to be carried out to clarify who is actually responsible for paying.
Many people with health and nursing care needs are automatically means tested first, and end up paying, and yet families report there will often have been no assessment for Continuing Healthcare. It is this that has led to thousands of retrospective claims for Continuing Healthcare being made.
Prior to 2007 each Health Authority had its own eligibility criteria for Continuing Healthcare. The result was a ‘postcode lottery’, great confusion and thousands of complaints to the Health Service Ombudsman.
In 2007 the Department of Health introduced a new ‘National Framework’ for England, with the aim of providing a consistent single assessment process for everyone. Most (but not all) of these National Framework guidelines apply to Wales as well.
This National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care defines NHS Continuing Healthcare as follows:
“‘NHS continuing healthcare means a package of ongoing care that is arranged and funded solely by the NHS where the individual has been found to have a ‘primary health need’… Such care is provided to an individual aged 18 or over to meet needs that have arisen as a result of disability, accident or illness. …Eligibility for NHS continuing healthcare places no limits on the settings in which the package of support can be offered or on the type of service delivery.”
Get assessed for Continuing Care.
Read these frequently asked questions about NHS Continuing Healthcare – we’ve included lots of tips to help you.
Care To Be Different was set up by The Founder, after she won a tortuous four-year battle to secure Continuing Healthcare funding for both of her parents. Since then she has had personal contact with over 900 families needing help understanding Continuing Healthcare. Almost all of those families had either not been told about NHS funding when a relative first needed nursing care and/or faced obstacles in the assessment process.
How To Get The NHS To Pay For Care, to help families get through Continuing Healthcare assessments and argue their case. It shows you what to do – and what not to do – and it can save you losing everything in care fees. It’s easy to follow and cuts through the confusion to show you step by step how things work.
“We were so grateful to find a clear and helpful guide to the process at a time when my mum was so vulnerable. It gave our family the confidence to successfully fight for NHS funding. The NHS should be ashamed of the way families/carers are treated: incorrect records, withholding information, conflicting information… I felt I must write to thank you for the information.” Rachel
“We have heard today that my mother-in-law is to receive NHS Continuing Care funding. We could not have done it without your book and website. Thank you so much.” Ian Johnson
Maureen Grogan’s family challenged her local Primary Care Trust’s (PCT) decision to deny her Funded Nursing Care.
(At the time it was a PCT, whereas now it would be a Clinical Commissioning Group – CCG.)
In January 2006 she won her case.
Like the Coughlan Case, the Grogan Case has given families who are pursuing NHS Continuing Healthcare further clout in their legal argument.
Challenging the NHS can be a hard fight, and it helps enormously to be able to refer to and take courage from people who have already succeeded.
As with Pamela Coughlan, Maureen Grogan and her family also deserve our immense gratitude.
The judgment in the Grogan Case in the High Court for England and Wales showed that the criteria used by the NHS in their care funding decision had been “fatally flawed” and that Maureen Grogan’s should not have had to pay for her own care.
At the time Maureen Grogan, 65, was chronically ill with multiple sclerosis and additional health needs, including dependent oedema and the associated risk of ulcers. She had nil mobility, was totally dependent and also experienced cognitive impairment. She was in a Nursing Home and she had already had to sell her house to pay for care.
The NHS had care assessed her three times as ‘ineligible’ for NHS Continuing Healthcare – even though the care assessments showed she had substantial health needs. She was receiving the (then) top band of Funded Nursing care (FNC) – also known as Registered Nursing Care Contribution (RNCC).
The Grogan Case came after the landmark Coughlan case and relied heavily on the legal argument that came out of that case. The final judgment in the Grogan Case found that Maureen Grogan’s local NHS Trust (Bexley) had moved the goalposts in terms of defining her level of need – with the result that Maureen Grogan had repeatedly been found ‘ineligible’ for NHS care. The judge ruled that the NHS should pay for her care.
The PCT had not followed the Coughlan Test in it’s decision-making process.
Since the Grogan case, new national guidelines about NHS Continuing Healthcare funding have been drawn up in an attempt to make things clearer. However, despite this, tens of thousands of elderly people with health care needs as their primary need are still being forced to pay for their own care.
Find out how Care To Be Different can help.
The Coughlan case and the Grogan case: Your 9-point Checklist for NHS Continuing Care
Challenging injustice can be hard. Challenging injustice when you’re severely disabled, like Pamela Coughlan, requires extraordinary courage and determination.
Pamela Coughlan’s legal victory in securing NHS Continuing Healthcare for herself has since helped thousands of families with elderly relatives to also find the courage to fight for what they’re entitled to – and force the NHS to provide free care.
Many families are still fighting that battle and still face many obstacles. However, thanks to Pamela Coughlan they can refer to the ‘Coughlan test’ in their legal argument for the entitlement to care fees.
For this and for everything she went through during her case and beyond, Pamela Coughlan deserves our gratitude.
In the 1970s Pamela Coughlan was paralysed after a road accident and needed full-time care. She had severe physical disabilities including partial paralysis of her respiratory tract.
At the same time, however, she could still speak coherently and with mental clarity, use an electric wheelchair by herself, use a computer with voice technology, and eat and drink with some assistance.
Her care was financed by the NHS until, in the 1990s, the East Devon Health Authority) transferred responsibility for her care to Social Services. By reclassifying her needs as ‘social’ care rather than ‘health’ care, this meant she would now be means-tested and have to pay for her own long-term care.
She pursued a case against the NHS to secure NHS Continuing Healthcare, fighting it in the High Court. It took two years and, in 1999 after an unsuccessful appeal by the then Labour government, she finally won a landmark case in the Court of Appeal (The judgment applies to England and Wales.)
The Court agreed that the actions of the local authority had been unfair and that the NHS had not followed its own guidance. It stated that the NHS had reneged on its promise to provide long-term care, used inconsistent eligibility criteria and had consequently made unlawful decisions.
The key question was whether nursing care for a chronically ill patient can lawfully be provided by the local authority as ‘social’ care (means-tested) or whether it must be provided free of charge in law by the NHS.
In court the judge ruled that both general and specialist nursing care were the sole responsibility of the NHS. However, the Court of Appeal subsequently found that the local authority can provide some nursing care, but only when…
“…the nursing services are merely (i) 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.”
In Pamela Coughlan’s case, however, the Court of Appeal ruled that her nursing care was the responsibility of the NHS, not the local authority.
The Court also raised the issue of people with needs that are chronic yet stable – as opposed to people with acute conditions. The NHS should address chronic yet stable needs as part of a Continuing Healthcare assessment process. The NHS should also not assume that just because a need is ‘stable’ it is automatically the responsibility of the local authority.
Pamela Coughlan’s needs were greater that those for which the local authority could be expected to provide care. As a result she was eligible for NHS Continuing Healthcare. The ruling also indicated that it would therefore be logical that anyone with needs the same as or greater than Pamela Coughlan should also be eligible for NHS Continuing Healthcare. This became known as the ‘Coughlan Test’.
The case clarified the law regarding fully-funded NHS Continuing Healthcare. The Court of Appeal stated that…
“…where the primary need is a health need, then the responsibility is that of the NHS, even when the individual has been placed in a home by a local authority.”
Continuing Care assessors will often say that the Coughlan case is ‘old’ and therefore doesn’t count anymore. They also often say that the rulings in this case are no longer relevant. Both statements are incorrect. Assessors must still decide whether or not a person’s care needs fall above or below the legal limit for local authority care. If they fall above that line, the NHS must fund care through NHS Continuing Healthcare – and no means testing should take place. Read more about the local authority’s role in NHS Continuing Healthcare.
The judgment also concluded that the ‘vast majority’ of people in nursing homes should have their care fees NHS funded, and that only if someone’s health care needs are ‘incidental’ to their overall care needs should the responsibility be passed to Social Services.
This is now known as the ‘Primary Health Need Approach’ and it is applied in all assessments for NHS Continuing Healthcare. It came about in 2007 as a direct result of the Coughlan case. However, there is no definition in law of a Primary Health Need. It means that a culture has developed where NHS funding assessors seem to apply their own subjective interpretation of the guidelines onto funding decisions. The result is that many tens of thousands of people are still illegally charged for healthcare and nursing care in the UK.
The guidelines in question are known as The National Framework for NHS Continuing Healthcare. First introduced in 2007 and revised again more recently in 2018, they were supposed to streamline the Continuing Healthcare eligibility criteria nationally.
However, there is a legal argument that suggests if Pamela Coughlan’s needs were measured against this National Framework, she would be found ineligible for NHS funding.
Read more of our blogs around the subject here:
Part 1: But Pamela Coughlan is Not Really Eligible for CHC, is She …?
Part 2: Pamela Coughlan – Needs of a “Wholly Different Category”
Part 3: Pamela Coughlan – Ancillary and Incidental to the Provision of Accommodation
Find out how our step-by-step guide through the Continuing care assessment process can help you.
If you need to help, call us on 0161 979 0430 or email your enquiry to enquiries@caretobedifferent.co.uk
If you want to speak to a specialist CHC nurse or just get some general advice about your case, visit our Advice Line Services or else get 1-2-1 expert legal support and advocacy help with your assessment or appeal.
This poem may be helpful to put up in a care home bedroom or, with permission from the home, on the notice board.
Blessed are they who understand
My faltering step and shaking hand.
Blessed are they who know my ears today
Must strain to hear the things they say.
Blessed are they who seem to know
My eyes are dim and my answers slow.
Blessed are they who look away
When my tea was spilled at the table today.
Blessed are they who with a cheery smile
Will stop to chat for a little while.
Blessed are they who never say
“You’ve told that story twice today.”
Blessed are they who know my ways
And bring back memories of yesterdays.
Blessed are they who ease the days
And care for me in loving ways.
Blessed are they who make it known
I’m loved, respected and not alone.
Author Unknown
If you need domiciliary care – or care at home – you have various options, including:
Some home adaptations and mobility equipment may be available free of charge. It’s always worth asking. Gov.uk has a lot of other additional information, too.
Talk to Social Services AND to your GP. Make sure the focus remains firmly on your health needs first and foremost – not on how much money you have. Your GP may assume that it’s a matter wholly for Social Services, but if you have health needs, the NHS needs to be involved. At some point you may be eligible for NHS Continuing Healthcare funding.
If you feel you can no longer stay in your current home, you may not necessarily have to move into a care home. You may be able to find sheltered housing locally – or perhaps move into a care ‘village’ or retirement village, such as those run by ExtraCare.
Another option that requires a great deal of careful thought is to have a family member move in with you at home (or vice versa). This is a big step for all concerned and it’s a good idea to take financial advice before you do it, as it could affect your benefits and other aspects of your entitlement to care.
If you are thinking of going into full time care at this point, our practical guide, How To Choose A Care Home, will help…
This 39-page practical guide helps you ask the right questions, understand how care fees work and make a better decision. You’ll save time now – and avoid unnecessary care costs later. It also gives you a helpful introduction to care fees and fully-funded NHS care. Read more about How To Choose A Care Home.
“Your list of questions to ask a care home is fantastic… I was more confident in the meetings, and that must be apparent to the care home, too.” Jim Blainey
When someone goes into a care home it can be a very difficult time for the whole family. It’s often a crisis point and, aside from the emotional upheaval, you’re also faced with the question of care fees and who will pay them.
If you have an elderly parent or relative in care and you find yourself with the responsibility of acting on their behalf, it’s vital that you have a Power of Attorney. Without it you may find it difficult at times to have influence where you need to.
This is a crucial first step – especially if you are dealing with financial institutions, NHS departments and other organisations. Find out more about Powers of Attorney.
Your next challenge may well be understanding the care fees system. It can be a bit like being thrown in the deep end. You don’t know what you don’t know – and it can be hard to know where to go to find out.
It’s always reassuring to find someone on your side who’s been through the process before. At Care To Be Different we aim to light a clearer way forward for you. We provide helpful tips, information and guidance to help you manage some of the difficult issues that can arise when an elderly relative goes into care.
If you’re going into a care home yourself, and are currently still living at home, it may feel as though other family members are ‘taking over’ and organising things for you. You may feel happy about this. On the other hand you may feel you want to resist every suggestion and/or retain control.
There’s no right or wrong way to feel. It’s good to be aware though that tensions within a family are natural at a time like this and the more everyone pulls together and talks things through, the easier it will be.
It can be challenging talking to people ‘in authority’, especially when you’re unsure if what they’re saying is correct and you’re not sure where the responsibility lies for different services.
GPs do not always know how the care system works or what the specific health needs assessment proceses are, including for NHS Continuing Healthcare. That’s why it’s vital to be as informed as possible.
If you have an elderly relative in hospital, you may not be aware of the procedures that the hospital should follow before your relative is discharged. Read more about hospitals and elderly people.
5 things to check before your relative is discharged from hospital
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