This series of blogs takes a closer look at 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 the Court of Appeal’s statement that Ms. Coughlan required “services of a wholly different category” than those that could lawfully be provided by Social Services. If you missed Part 1 of this series, follow the link below!
Read Part One of this series – But Pamela Coughlan is not really eligible for CHC, is she…?
As we discussed in Part One, the Court of Appeal’s findings in respect of Ms. Coughlan’s care requirements in 1999 continue to underpin the eligibility criteria for Continuing Healthcare funding to this day. Of particular importance was the judge’s statement that Ms. Coughlan and her fellow residents required “services of a wholly different category” than those that could lawfully be provided by the Local Authority.
As one insightful commenter has helpfully explained under Part One of this series, the judgment also clarified the legal division between the type of care delivered by the NHS and Local Authority in the community: the Local Authority could provide nursing services as part of a package of care, but only if those services were “merely incidental or ancillary to the provision of accommodation”, and of a “nature” that Social Services could reasonably be expected provide.
“The NHS does not have sole responsibility for all nursing care. Nursing care for a chronically sick patient may in appropriate cases be provided by a local authority as a social service and the patient may be liable to meet the cost of that care according to the patient’s means. The provisions of the Health Act and the Care Act do not, therefore, make it necessarily unlawful for the Health Authority to decide to transfer responsibility for the general nursing care of Miss Coughlan to the local authority’s social services. Whether it was unlawful depends, generally, on whether the nursing services are merely
- incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide and
- of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide. Miss Coughlan needed services of a wholly different category.”
- v. North and East Devon Health Authority, ex parte Coughlan
Read the full judgment here: https://www.bailii.org/ew/cases/EWCA/Civ/1999/1871.html
In the Judge’s view, Ms. Coughlan’s needs were not “merely ancillary or incidental” to the provision of her accommodation, and were of a “nature” the Local Authority could not be expected to meet i.e., the services Ms. Coughlan required as part of her package of care were of a “wholly different category” than those expected to be provided by Social Services.
Let’s have a closer look at the nature of Ms. Coughlan’s needs and shed some light on the Court’s seemingly mysterious findings.
In Part One of this blog, we used the Spinal Injury Association’s description of Ms. Coughlan’s care requirements to assess her “level of need” in each of the twelve care domains on the 2018 Decision Support Tool. 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.
| Care Domain | Level of Need |
| Breathing | LOW |
| Nutrition | LOW |
| Continence | HIGH |
| Skin | MODERATE |
| Mobility | HIGH |
| Communication | NO NEEDS |
| Psychological & Emotional Needs | NO NEEDS |
| Cognition | NO NEEDS |
| Behaviour | NO NEEDS |
| Drug Therapies and Medication | HIGH |
| Altered States of Consciousness | LOW |
| Other Significant Needs | SEVERE |
If you’re preparing for a CHC assessment, read our selection of helpful blogs on the subject which will let you know what to expect at the MDT:
Preparing for the Multi-Disciplinary Team Assessment
What Happens At The Multi-Disciplinary Team Meeting?
Don’t let the Decision Support Tool become a ‘tick box’ exercise
What Is The Role Of The MDT Coordinator?
Can The MDT Panel Refuse To Proceed If I Have An Advocate?
Who completes the Decision Support Tool in NHS Continuing Healthcare?
Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls
Looking only at the assessed levels of need, it is difficult to understand why Ms. Coughlan was described as requiring services of a “wholly different category” than the vast majority of people living with Alzheimer’s or Dementia, particularly those who require 24-hour care in a residential setting. However, once we apply the “Primary Health Needs Test” to the evidence gathered in the twelve care domains, the reasons for the Court of Appeal’s description should become clear.
As anyone who has pursued a claim for NHS Continuing Healthcare Funding will know, eligibility depends on the application of the Primary Health Needs Test, a.k.a. the Four Key Characteristics of Nature, Intensity, Complexity and Unpredictability. If one or more of these criteria are found to be met, the person’s primary need is for healthcare; i.e. their needs are more than ancillary and incidental to the provision of accommodation and require care of a nature the Social Services cannot be expected to provide. The Decision Support Tool explains that “each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs. The totality of the overall needs and the effects of the interaction of needs should be carefully considered when completing the DST.”
If you’re preparing for a Continuing Healthcare funding assessment for yourself or on behalf of a friend or relative, read our essential tips on how Covid-19 has affected the process!
Are you ready for 1st September 2020? CHC Funding Gets Back to Business
Let’s have a closer look at the four Key Characteristics and how they might be applied in Ms. Coughlan’s case, using the summary of needs from the Spinal Injuries Association. We shall begin by setting out the nature of the needs.
IMPORTANT – The analysis of the “nature” of the needs should be the longest and most detailed of all the characteristics. The nature characteristic should provide a comprehensive picture of the person’s holistic needs, clearly setting out their daily care requirements in each of the twelve care domains as well as the interventions required to meet them. If this description is not sufficiently detailed, it will be impossible to apply the intensity, complexity and unpredictability characteristics appropriately.
Nature
This describes the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.
Ms. Coughlan was seriously injured in a road traffic accident in 1971. She sustained a complete C5/6 spinal cord injury. The cervical spine is located between the shoulders and the skull. In general terms, the higher the injury to the spinal cord, the more debilitating the effects. 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.
Read more about cervical spinal cord injuries here.
There is a common misconception that CHC Funding is only available to elderly people in care homes, but many young adults also qualify. Find out more here: Who is entitled to CHC?
As a result of her injury, Ms. Coughlan is only able to breathe diaphragmatically; she wears a corset during the daytime to keep her chest upright, without which she would suffer shortness of breath. Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections. (Breathing – LOW)
Ms. Coughlan maintains a healthy BMI and is not at risk of malnutrition. Her swallow is unaffected by the spinal cord injury and she is able to take normal consistency food and fluids. While there is no acute risk of aspiration due to dysphagia, were Ms. Coughlan to aspirate food or fluids, she would be at greater risk of infection due to paralysis of the respiratory muscles. Ms. Coughlan can eat independently using a spoon strapped to her hand, provided 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. (Nutrition – LOW)
Ms. Coughlan is doubly incontinent and is unable to relieve herself without skilled assistance. She wears continence pads in case of accidents, but these rarely occur. Intermittent catheterisation is performed by nursing auxiliaries every three hours to ensure frequent emptying of the bladder. Fluid intake is carefully managed to prevent overfilling, which can trigger an attack of autonomic dysreflexia, see below. Ms. Coughlan is unable to evacuate her bowels independently and requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night. A cervical spinal cord injured person has no sensation below the level of the injury, meaning their body cannot tell them in the usual way when they need to use the toilet. All the body can do in such a situation is to trigger its “high alert” system, which it does by dramatically raising the person’s blood pressure. This condition is called autonomic dysreflexia. Episodes are life-threatening and should be treated as a medical emergency. Urinary tract infections, constipation and other similar complications can quickly lead to autonomic episodes if not treated early. Manual evacuation procedures can trigger attacks of autonomic dysreflexia and as such require particular skill. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential. (Continence – HIGH)
Autonomic dysreflexia is a rare condition. Even experienced clinicians do not always recognise the immediate risks to the individual and the need for urgent care. Listen to Tracy’s story of a frightening experience at A&E here.
Ms. Coughlan has no skin sensation or perception of skin damage due to sensory paralysis below the level of her injury. She has high vulnerability to skin breakdown as she is unable to change her position in bed or wheelchair without assistance. Even minimal pressure below the level of the spinal cord injury can quickly lead to an attack of autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic episodes is extremely high. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is able to tolerate up to 12 hours sitting in a wheelchair so long as regular pressure-relief is afforded. Ms. Coughlan uses a silicon-foam cushion in her wheelchair, but tolerates a standard mattress providing she is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h). She returns to bed for intermittent catheterization every 3 hours (typically for a 10 min duration), which affords regular pressure relief. Despite pressure-relief strategies and expert management, Ms. Coughlan has suffered pressure ulcers on her bottom. Although these areas are now healed, they remain highly vulnerable to further breakdown. Skin breakdown is extremely dangerous for a spinal cord injured person due to the interaction between compromised skin integrity and autonomic dysreflexia. Should breakdown occur, healing process would be lengthy and complex. Expert management of skin integrity is essential. (Skin, including tissue viability – MODERATE)
Ms. Coughlan is tetraplegic, meaning she is paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. She has no triceps function in her arms. Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Careful positioning and choice of fabrics are essential to avoid pressure below the level of the spinal cord injury, which could trigger autonomic attack. However, once transferred into a wheelchair Ms. Coughlan has a reasonable amount of independence as she has retained some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. Ms. Coughlan does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week using a special frame helps with maintaining appropriate organ positions and strengthening her bones. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension. (Mobility – HIGH)
Ms. Coughlan 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. (Communication – NO NEEDS, Cognition – NO NEEDS)
Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and, Iron. She does not require a complex daily regime of medications. Ms. Coughlan requires the insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which is not amenable to control by analgesics. In the event of an episode of autonomic dysreflexia Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required. Skilled, continuous monitoring of Ms. Coughlan’s condition pre-and post-administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation. Autonomic dsyreflexia exists on a continuum; the risk of attack cannot be permanently recued or removed, although expert care planning can reduce the likelihood and severity of episodes. (Drug Therapies & Medications: Symptom Control – HIGH)
Ms. Coughlan is only able to breathe diaphragmatically and is at medium risk of fainting if her air flow was inhibited. This is managed by wearing a ‘corset’ – abdominal binder – which keeps her chest upright. Ms. Coughlan is at increased risk of fainting when using her standing frame. (Altered States of Consciousness – LOW)
Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Ms. Coughlan is able to tell when she is too hot or too cold and therefore proactive monitoring is not required regarding this aspect of her care.
Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Anything that would normally be painful, uncomfortable or physically irritating may cause dysreflexia following spinal cord injury. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency. It first manifested in Ms. Coughlan ~20 years post-injury, highlighting the idiosyncratic nature of the condition. Episodes were initially very unpredictable – sometimes once per month, at other times several times in a week. They 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). Autonomic dysreflexia exists on a continuum and is highly unpredictable. 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. (Other Significant Needs – SEVERE)
Read the National Spinal Injuries Association’s Factsheet on Autonomic Dysreflexia here.
Conclusion
As should be apparent, the type of services Ms. Coughlan requires throughout the 24-hour period relate to the careful management of her physical health, without which she would be at critical risk of cerebral injury and even death.
Ms. Coughlan’s care team requires specialist knowledge of the unique challenges arising from a cervical spinal cord injury, and in particular autonomic dysreflexia.
As Tracey’s story above demonstrates, even experienced A&E clinicians, who see a wide variety of patients every day, have often never encountered autonomic dysreflexia, and are unaware of the critical risks it presents and the need for urgent care.
Owing to the nature of her needs, Ms. Coughlan requires services of a wholly different category than those that an authority whose primary responsibility is to provide social services can reasonably be expected to deliver.
While many sufferers of Dementia, Alzheimer’s and stroke also need full assistance to meet their continence, skin, mobility and medication needs, the nature of the interventions often does not exceed the type of services the Local Authority can reasonably be expected to provide, i.e., routine assistance with eating, drinking, washing, dressing, toileting, moving around safely, maintaining skin integrity and ensuring compliance with routinely prescribed oral medications. The staff meeting needs of this type would not usually require any additional skills or particular training. None of these interactions would require the oversight of a trained nurse, or other similarly skilled professional, due to the risks to the individual should poor care, or difficulty, arise. Were care to be missed for some reason – e.g. non-compliance, staff shortages, emergency – there would be no immediate, urgent risk to the person’s safety, i.e. their life would not be endangered. None of these statements would be true of Ms. Coughlan.
This concludes our examination of the Nature of Ms. Coughlan’s needs. We hope you have found it informative. Next week we shall apply the Intensity, Complexity and Unpredictability characteristics to the information we have gathered about Ms. Coughlan’s daily care requirements to see if any of those criteria are met.
Don’t miss Part 3, “Ancillary and Incidental to the Provision of Accommodation”, coming next week!
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Another excellent and informative article from Care To Be Different. It is a common tactic of CHC assessors during the MDT to gloss over the 4 key characteristics with comments like ‘I’ll do that later’ and ‘we haven’t got time to do that now, let me know your thoughts’. A good assessor will explain the importance of this part of the MDT and the meeting will take as long as it takes. This article highlights how to be prepared for this very important part of the MDT. Interesting to note that this Court of Appeal ruling was nearly 22 years ago and STILL individuals and their families are battling the ‘system’. Please support Rear Admiral Mathias’ campaign for a Judicial Review as per care To Be Different posts.
Thanks for your comments Anne. Kind regards
Hi Everyone,
This isn’t directly relevant to the above article, but I just wanted to update everyone on the outcome of the Independent Review Panel I attended in January. I received a letter today stating that the panel “has recommended that the original decision is unsound” but “NHS England does not have the power to over-turn a CCG’s decision so it will be for the CCG to decide what further action it should now take”.
The national framework states that the CCG can ignore the IRP’s recommendation under exceptional circumstances, but what does that mean in practice? What can be considered valid exceptional circumstances? I don’t know whether to start celebrating or not.
Hi Andrew, glad to hear that your IRP meeting seems to have been successful. We have ours on 10th March via telephone link. As we know these meetings are difficult at the best of times so not holding out much hope trying to explain our case via phone. However, I would like to ask what you meant when you said you fed all your information into the ‘Primary Health Needs” test.
Also, I’m assuming like us you have had numerous meetings presenting the same evidence so just wondered what it was that made the IRP say that the original decision was unsound.
Any help would be much appreciated and good luck to you going forward.
Angela
This series of articles on understanding a Primary Healthcare Need is excellent.
I needed this kind of information, when I was at the stage of IRP for my late father’s appeal.
The assessor’s assigned to my father’s case were woeful in their analysis of my father’s case.
Simply discussing my father’s health for a couple of hours and ticking boxes, in my humble opinion does
constitute a meaningful assessment based on understanding the clinical facts/nursing needs and then just a few lines to apply the key characteristics of Nature,Intensity,Complexity and Unpredictability.
We can see from this article, that deals with the first characteristic of Nature, how much research and work is required to provide a clear and comprehensive document, detailing the healthcare needs over a 24 hours period, in order to then give a rationale for the decision reached.
More often than not, assessments are hastily convened, with little research and missing professionals and as in our case, the advice for follow up investigations deliberately ignored, in preference to a quick decision ratified by CCG, with very little work on this crucial area.
I fear that the pandemic will only add to the pressure to get quick decisions and that cases will not be given the time and consideration needed to better understand the healthcare needs of the patient.
This is why, this series is even more important for relatives to really understand.
If they are to have any chance of proving their case, they need to be able to prove it, using these characteristics. It really is the only chance of success. Sad as that is!
This should be the main focus of any appeal. Arguing about CHC technicalities/missed time frames etc won’t overturn a decision in my opinion. Families need to prove that their relative has a PHN.
Looking forward to reading the next installment.
Many thanks for your kind comments Michelle. Best regards
“If they are to have any chance of proving their case, they need to be able to prove it, using these characteristics.” This is how I went about proving it. I put a huge amount of effort into the 4 characteristics for my IRP submission. I took the large list of questions posed in the National Framework’s Practice Guidance 3 and answered them all in relation to my mother’s needs. I then fed all of this into the ‘Primary Health Needs’ test given the clear connection between the 4 characteristics and the ‘quality’ and ‘quantity’ conditions of the eligibility test.
Hi Andrew,
I’m delighted to hear this! I believe the only way to overturn an ineligible decision is to prove a PHN using the Characteristics. Nurse assessors haven’t the time and quite often the analytical skills required to complete this important area of the NHS CHC. You certainly need a level of skill & time to be able to understand and apply the Key Indicators.
Like you, I spent literally hundreds of hours researching the evidence and presenting it in a way that proved beyond doubt that my father had a Primary Healthcare Need, this was after I had dispensed with a law firm operating in this specialist field (Not FarleyDwek!) that informed me I was unlikely to overturn the decision. I did! And like you ended up with an Unsound and Unsatisfactory decision from IRP, who concluded that my father did indeed have a PHN at his first dismal assessment/MDT/DST.
It’s very unlikely that your CCG will disagree with NHS England. To do so would in my opinion undermine NHS England. It would be very interesting to see on what grounds they thought that NHS England’s decision was wrong! It would have to be Exceptional! In simple terms a CCG would be dismissing a decision made on behalf of the head of NHS England….Sir Simon Stevens! I wonder how many CCG’s have actually taken this action?
So, I would be quietly celebrating, until you get that email from your CCG that accepts the outcome of the IRP. Then give yourself a huge pat on the back! It’s no mean feat to beat the NHS, without using a specialist legal team.
It was a bittersweet victory for me, as my dear dad, died during the process, but I felt dad would have been so proud of me.
The process of recovering the fees, is another hurdle to overcome.
It took at least 4 months for this to happen. You will need to provide all the evidence of invoices,care home statements/bank statements etc, relating to the fees, along with proof of identity! God knows how many times I had to prove who I was, even after I had met with CHC individuals at local resolution meeting and delivered appeal documents to their offices in person! They will ask for original birth certificates, death certificates, Probate, POA……etc.
Do your homework again, in terms of calculating the fees to be restored and the interest to be added and the tax that is taken. My own CCG, weren’t at all helpful on this, but you find lots of information on this subject on here.
The tax was withheld by CCG but I applied to HMRC using form R40 and recovered it. Again, attention to detail is important. I found accounting errors in my dad’s care home invoices/statements! They had been pocketing extra! However, I had the original invoices and dad’s bank statement to prove what he had paid. CCG accepted the bank statements. (it was up to CCG to argue with the nursing home over the accounting errors)
I’m so pleased that you’ve posted your success here. Well done!
It gives hope to those going through this ordeal and shows that it is possible to overturn an ineligible decision, if you know how and with the help of CARE TO BE DIFFERENT…… Love them!
Many thanks Michelle for your useful contribution as always and for your kind comments!