Pamela Coughlan – This three-part series will examine the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC funding. In today’s blog, we address some common misconceptions about the findings of the Court of Appeal in 1999 and consider Ms. Coughlan’s daily care requirements using the 2018 Decision Support Tool. Don’t forget to look out for Part 2, “Needs of a Wholly Different Category”, in the coming weeks!
Most people who dip their toe into the choppy waters of NHS Continuing Healthcare Funding (CHC) will encounter Pamela Coughlan. The findings of the Court of Appeal in her landmark 1999 case against North & East Devon Health Authority helped clarify the legislation underpinning the division between health and social care in England and Wales. This distinction, and the need for nationally defined criteria, led to the drafting of the National Framework for NHS Continuing Healthcare Funding (CHC) and NHS-funded Nursing Care (FNC), and the development of the CHC Checklist and Decision Support Tool as a means of determining individual eligibility for NHS-funded community care.
You can read the full text of the Court of Appeal’s findings here.
Pamela Coughlan was seriously injured in a road traffic accident in 1971. She sustained a complete C5/6 spinal cord injury; in layman’s terms, her spinal column was severed at the neck. As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.
Watch an interview with Pamela Coughlan here.
The Court of Appeal judgment centred on the Health Service’s decision to close the NHS facility where Ms. Coughlan resided, its alleged failure to provide a previously assured “home for life” for Ms. Coughlan, and its attempt to shift the burden of responsibility for her care onto the Local Authority. As social care is means-tested, this would have forced Ms. Coughlan to assume the cost of all her health and social care needs, which had previously been fully funded by the NHS. The Coughlan judgment was, therefore, fundamental in clarifying the legal division between health and social care in England and Wales and remains so to this day.
Read our blogs below for more information about the difference between healthcare and social care needs:
Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs
Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs
The importance of the Court of Appeal’s judgement where we are concerned is that it categorised Ms. Coughlan as requiring “services of a wholly different category” than those provided by the Local Authority. This one sentence, easily missed on a quick read through, continues to underpin the eligibility criteria for CHC funding all these years later. Indeed, the National Framework draws Commissioners’ attention to “cases that have indicated circumstances in which eligibility for NHS Continuing Healthcare should have been determined, and where such an outcome would be expected if the same facts were considered in an assessment for NHS Continuing Healthcare under the National Framework (e.g. Coughlan)” (National Framework for CHC, 2018, para. 157).
All this being true, and enshrined in legislation no less, why do we encounter so many people – families and experienced CHC and legal professionals alike – who believe Ms. Coughlan is not, in fact, eligible for CHC funding? Not a week goes by without someone – a family member looking for advice, a CCG Nurse Assessor at an MDT – informing us, with great certainty, that Ms. Coughlan would not be found eligible were she assessed using the Decision Support Tool today. Many people believe that the Health Service’s agreement to fund Ms. Coughlan’s long-term care was, in fact, due to it having reneged on the promise to provide her with a home for life, and not her clinical needs. Resources abound on the internet and we hear from many, many people who have considered Ms. Coughlan’s needs, as described by various sources online, and found them to be equal to or lower than their relative’s. On that basis, they conclude, their relative must also be eligible for CHC funding.
For more information about the Coughlan decision and its relevance today, read our blog:
How relevant is the Coughlan Decision Today?
Sadly, the vast majority of those people will be disappointed and perplexed when their relative is found not eligible for CHC funding by the local Clinical Commissioning Group. They will be even more dismayed when this decision is upheld by an Independent Review Panel at NHS England and may even come to suspect foul-play. On the basis of their understanding of Ms. Coughlan’s needs, the decision makes no sense.
So, why is there such misunderstanding about Ms. Coughlan’s needs and how they relate to the current eligibility criteria for CHC funding? We feel it is important to answer this question and help families determine whether their relative’s needs are comparable to, or in excess of, Ms. Coughlan’s. A significant amount of confusion arises, we believe, as a result of a lack of knowledge of Ms. Coughlan’s actual needs, which are unique and specific to a C5/6 complete spinal cord injury (cervical spine), a misunderstanding of the skill required to meet those needs on a daily basis, an overemphasis on the assessed levels of need in the Decision Support Tool and a misapprehension about the eligibility criteria for CHC funding generally.
IMPORTANT – As the Coughlan Judgment predates the National Framework for CHC funding, there is NO available Decision Support Tool for Ms. Coughlan. The rationale for funding is, therefore, somewhat unclear, save for the Court of Appeal’s statement that she required services of a “wholly different category” to those provided by Social Services. However, Ms. Coughlan has helpfully described her daily care requirements on many occasions over the years and we can reasonably estimate her level of need in each of the twelve care domains using this information.
The following table sets out a summary of Ms. Coughlan’s needs, as described by the Spinal Injury Association, in its 2015 factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare. In each case, we suggest what the correct level of need would be, using the 2018 Decision Support Tool.
| DOMAIN | DESCRIBED NEEDS | SUGGESTED LEVEL OF NEED & RATIONALE |
| Breathing | Wears a corset during the daytime to keep her chest upright without which she would have had breathing difficulties (shortness of breath as breathing is diaphragmatic only). There were no night care issues regarding her breathing. She was susceptible to chest infections (as paralysis of respiratory muscles prevents coughing to clear pulmonary secretions), which were relatively infrequent and not usually severe. | LOW
Episodes of breathlessness that readily respond to management and have no impact on daily living activities. |
| Nutrition | Can eat independently using a spoon strapped to her hand provided that the food is cut up for her.
Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup. |
LOW
Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies). |
| Continence | She is doubly incontinent. Needing intermittent catheterization, every 3 hours (performed by nursing auxiliaries) as this proves the most effective way of keeping dry. Fluid intake is carefully managed. She wears incontinence pads in case of leakage, but rarely gets wet. (Thus a well-managed need thereby minimizing risk of skin problems.) Able to travel and stay dry when going out and about (visiting friends etc.); she is accompanied only by a driver/handyman & manages her bladder by restricting fluid intake and using incontinence pads. Required insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) of her bowels every second night. | HIGH
Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation). |
| Skin (including tissue viability) | Has no skin sensation or perception of skin damage on large areas of her body due to sensory paralysis and has high vulnerability to skin breakdown as is unable to change her position on bed or wheelchair without assistance. She required repositioning approximately 8 times per day to maintain skin integrity. Able to tolerate up to 12 hours sitting in wheelchair so long as pressure-relief is afforded. Uses silicon-foam cushion in wheelchair, but tolerates standard mattress as is turned (side-to-side) 3-times at night (at 0200, 0600 and 0900h). Returning to bed for intermittent catheterization every 3 hours (typically for a 10 min duration) affords pressure relief. Despite pressure-relief strategies, she has had pressure ulcers on her bottom, which although healed have high vulnerability to skin breakdown. Only once did pressure ulcer become infected, necessitating an extended period of bed rest. | MODERATE
Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down. |
| Mobility | Paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso.
No triceps function in her arms. Requires hoisting (by 2 people) for all transfers and to be turned when in bed; However, once transferred into a wheelchair she has a reasonable amount of independence as she has retains some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. |
HIGH
Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning. OR Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.
|
| Communication | She retains some (very limited) use of her hands with which she can write (with a pen strapped to her hand). She remains completely mentally aware, can access the Internet, converse freely and represent her views articulately. | NO NEEDS
Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.
|
| Psychological & Emotional Needs | No evidence of psychological or emotional needs that impacted on her health and well-being. | NO NEEDS
Psychological and emotional needs are not having an impact on their health and well-being.
|
| Cognition | No cognitive impairment that had a significant effect on awareness of risk and delivery of care. She remained completely mentally aware. | NO NEEDS
No evidence of impairment, confusion or disorientation. |
| Behaviour | No behaviour that could be described as challenging. | NO NEEDS
No evidence of ‘challenging’ behaviour |
| Drug Therapies & Medications | All medication is routinely prescribed and administered by mouth; Senokot, Calcium, Iron.
Once her condition (tetraplegia) stabilised she did not require an allocated consultant nor require any interventions from ‘specialist’ healthcare professionals. Requires insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which does not respond to and is not amenable to control by analgesics. Does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week helps with maintaining appropriate organ positions and strengthening her bones. |
HIGH
Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage.
|
| Altered States of Consciousness | A medium risk of fainting if air flow was inhibited (managed by wearing a ‘corset’ – abdominal binder). | LOW
History of ASC but it is effectively managed and there is a low risk of harm. |
| Other Significant Needs | Autonomic Dysreflexia (AD) (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Autonomic dysreflexia first manifested ~20 years post-injury. Episodes of AD were very unpredictable – sometimes once per month, at other times several times in a week. There were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion this management prevented the need for vasodilators (nifedipine).
Poikilothermia: Because of her injury she was unable to maintain her core body temperature, which was unstable and variable, and consequentially, because of excessive perspiration, she required changes of clothes and the corset up to three times a day. Pamela was able to tell when she was too hot or too cold and therefore proactive monitoring was not required regarding this aspect of her care. |
SEVERE
Critical risks arising from AD, which is constant, life-threatening and unpredictable. AD attack is caused by noxious stimuli below the level of injury. Expert management of continence, skin integrity and mobility is essential. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence. |
Click Here to View the 2018 Decision Support Tool
Summary of Needs:
Now we have assessed Ms. Coughlan’s level of need in each of the twelve care domains, let’s add them to the matrix in the 2018 Decision Support Tool.
| Care Domain | P | S | H | M | L | N |
| Breathing
|
X | |||||
| Nutrition- Food and Drink
|
X | |||||
| Continence
|
X | |||||
| Skin (including tissue viability)
|
X | |||||
| Mobility
|
X | |||||
| Communication
|
X | |||||
| Psychological and Emotional Needs
|
X | |||||
| Cognition
|
X | |||||
| Behaviour
|
X | |||||
| Drug Therapies and Medication
|
X | |||||
| Altered States of Consciousness
|
X | |||||
| Other significant care needs
|
X | |||||
| Totals
|
1 | 3 | 1 | 3 | 4 |
On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs, three HIGH levels of need in Continence, Mobility and Drug Therapies, one MODERATE level of need in Skin, three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness, and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.
Looking solely at the assessed levels of need, it is completely understandable why people believe their relative must also be eligible for CHC funding. Many, many sufferers of Dementia, Alzheimer’s disease, Strokes and other cognitive disorders will be assessed as having a SEVERE level of need in Cognition, a HIGH level of need in Mobility, Communication and Behaviour, or Nutrition, Medication or Skin, along with a number of MODERATE and LOW levels of need in other domains. But despite their assessed levels of need being equal to, or even greater than, those of Pamela Coughlan, they will not be found eligible for CHC funding.
Why? Because, except in the case of one PRIORITY level of need or two SEVERE levels of need, eligibility for CHC funding is not determined by the assessed levels of need, but by the application of the “primary health needs test”, also known as the four Key Characteristics of Nature, Intensity, Complexity and Unpredictability.
Read our series of blogs for more information about the four Key Indicators
PART 1- Looking At The 4 Key Indicators: Unlocking the basics,
PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence
PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw
PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions
Before we can assess Ms. Coughlan’s eligibility for CHC funding, we need to consider the nature, intensity, complexity and unpredictability of her needs, based on the information we have gathered in the twelve care domains. And that’s exactly what we’ll do in part two of this series, Needs of a Wholly Different Category, coming soon!
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I have been told that my mother’s care, was beyond the carers at a residential care home, by the manager, as his staff could not cope with my mother’s health needs. I have used the Pam Coughlan, template and even with the scores from the original MDT, being changed by the last Assessor. My mother is above the scores given to Pam Coughlan. Even when they have left out domains, as they were too busy. Nothing put into domain 12, yes there are 12. Wrong dates used on my mother’s entry into a home, no medical record from hospital number 2, taking 4 years to obtain the hospital records for hospital 1. playing down her health needs. Stating that her bedsores, healed over a month or two, maybe. ( Grade 4 to the bone).
Before the Coughlan court judgement in 1999,one of the problems was the NHS postbox lottery which consisted of the PCT’S as they were called then all operating different criteria in their assessments for continuing healthcare.
The most important thing to remember about the Coughlan court judgement,is that the court set out quite clearly,the deciding line between what was NHS care/and social care.
This is what the court stated if care was merely incidental and ancillary to the persons needs,then the local councils can charge and fund it(incidental and ancillary means minor ,of little consequence,not of any significant amount ect.
NHS continuing healthcare should be awarded,if the care given is the result of health need( put plainly it means the care required is needed because of a person’s health needs.)the law from Coughlan states that plainly.
The criteria used by the NHS today is unlawful as the criteria that should be used is the one the court in Coughlan set out ( MERELY INCIDENTAL AND ANCILLARY) its not complicated as the NHS States it is as the NHS has everyone believing that their criteria was an result of the Coughlan court case when it fact the criteria came into being to avoid the law of the land that came out following that court case,to carry on assessments with their illegal set of criteria,to continue to refuse clients their free care.
What we all should be concentrating on is the illegal criteria,the part of the local authorities in not challenging their colleagues in the NHS by
illegally charging clients that they know should be funded by the NHS.
This illegal criteria by the NHS has been used ever since the labour government lost the court challenge in the Coughlan case and has resulted in experts in believing that the criteria operating is in fact the criteria that has to be used in every NHS continuing healthcare assessment.
The only thing that should be used in the assessment is are this persons healths needs more than mearly incidental and ancillary,if yes continuing healthcare should be provided (full stop )
It makes me laugh when healthcare professionals say Pam Coughlan wouldn’t be eligible today. Well actually she is.
I used the Pam Coughlan case in my mum’s LRM when asking for evidence that the criteria bar had not be set higher for my mum than it had for Pam. The reply was ‘we don’t have that evidence.’
Exactly! Our CCG confirmed they did not know the detail and needs of the Coughlan case, or other relevant cases, but that it was ok as the National Framework is ‘Coughlan-Compliant’.
A super informative article to share with those setting out on this process. Sadly, this argument will continue until Health & Social care is reformed.
Professor Luke Clements Social Care Law Lectures/Series will help newcomers to further understand the Law regarding Coughlan.
As I reflect on my successful appeal for my late father’s CHC appeal, I knew that my father’s score in the 12 domains would not be overturned. To do so would not reflect well on the quality of assessment by the NHS nurse assessor and Social Worker. I spent hundreds of hours researching the CHC process and realized that my only hope of overturning the decision was to focus all my efforts on proving a Primary Health Care Need using the Four Key Indicators. The few lines written by the lead assessor in respect of the Key Indicators was woeful. This is where I believe families will have a greater chance of success. I remember asking CTBD for help on this topic, so I am looking forward to the next article.
I still have that phrase stuck in my head ” Upon reaching a recommendation on whether an individual’s primary needs are health needs, they should include consideration of the key indicators/characteristics of nature/intensity,complexity and unpredictability. Each of these characteristics may in combination or alone demonstrate a primary health need.”
The lead assessor wrote a few lines for each characteristic. I clearly remember thinking how dismal the paragraph for intensity was completed. One line! “requires carers to supervise mobility due to risk of falls”
The quality of the recommendation was poor and shocked me. It was without detail, context and with my father scoring severe in cognition did not take account of how this impacted on all areas.
It seemed to me that the assessor didn’t have time or wasn’t capable of producing a quality report, considering what the DST signified in terms of the key indicators. “One liners” in my opinion do not provide a rationale which explains why an individual does or doesn’t have a PHN.
To understand CHC and be able to apply it, you need a level of education and analytical skills, that is possibly beyond that of a nurse assessor. After all, an entire industry of specialist/legal firms are operating in this field!
I remember too that a list of recommendations of further actions and investigations were drawn up at the MDT for the assessor to follow up. This never happened as we received an ineligible decision just two days later! A shambolic assessment that was simply ratified by CCG.
Where the assessor had failed, I was able to take advantage & and prove through the use of the characteristics that my father did indeed have a PHN. The case was judged at IRP to be unsound and unsatisfactory and that my father did indeed have a PHN at his first assessment.
My father’s case was a complicated, messy process and at times overwhelming. We started with an ineligible decision, followed 6 weeks later by the fast track process, followed by the withdrawing of funding after 3 months, replaced by funded nursing care, then finally fast track again as my father deteriorated and died, followed by appeal after appeal at every stage of the process, all with time constraints. I never gave up, because I knew my dear dad was eligible. My father’s deterioration which prompted the FTT, was evidence enough for me to prove that without 24 hour nursing care he was at risk of further deterioration.
This process took almost 3 years and I physically met with and corresponded with CHC representatives, yet I still had to prove my identity over and over again, even at the point of restitution.
It is a huge commitment to take on the NHS but it is possible with determination, persistence and a whole lot of time & patience.
Retired Rear Admiral Philip Mathias, successfully recovered his late mother’s nursing fees and is now taking legal action against the Government and NHS England to expose the scandal that is Continuing Healthcare and to hold them to account. The Judicial Review is aimed at making the Government and NHS England stop CCG’s breaking the law.
Please readers continue to pledge to this important issue, spread the word and ask others to pledge.
After all, none of us know when we will need CHC funding in the future.
Good Luck to everyone and Stay Safe!