Pamela Coughlan – 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 consider the intensity, complexity and unpredictability of Ms. Coughlan’s needs, having examined the nature of her needs in Part 2. If you haven’t read Parts 1 and 2, make sure you catch up below!
Part 1: But Pamela Coughlan is Not Really Eligible for CHC, is She …?
Part 2: Pamela Coughlan – Needs of a “Wholly Different Category”
Despite being handed down over two decades ago, the findings of the Court of Appeal in Ms. Coughlan’s landmark case against North and East Devon Health Authority remain fundamental to the eligibility criteria for CHC Funding to this day.
Read our blog How Relevant is the Coughlan Decision Today? for more information.
Of particular importance was the Court’s attempt to define the legal division between the Local Authority (County Council) and Health Authority (NHS) in respect of delivering care in the community. Only services that were merely ancillary and incidental to the provision of accommodation, and of a nature that Social Services could be expected to provide, could be delivered by the Local Authority and therefore means-tested.
In the years following the Coughlan judgment, Health Authorities struggled to put the Court’s ambiguous statements into practice. A lack of nationally defined eligibility criteria resulted in a ‘postcode lottery’, with some local Commissioners being far more likely to find evidence of a primary health need than others.
Many people suggest the “postcode lottery” continues to this day. For further reading on the subject:
Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’
Concerns about a lack of fairness and consistency led to the publication of the National Framework for NHS Continuing Healthcare Funding and Funded Nursing Care in 2007 (updated 2012 and 2018), providing guidance to the then Primary Care Trusts (now Clinical Commissioning Groups) about the assessment process and eligibility criteria. The primary health need test introduced a set of four criteria – Nature, Intensity, Complexity and Unpredictability – intended to answer the questions posed by the Court of Appeal:
- Are the services required by the individual of a nature (type) that Social Services could reasonably be expected to meet? (Nature)
- Are the services provided to the individual merely ancillary and incidental to their need for accommodation? (Intensity, Complexity, Unpredictability)
If any one of these criteria are met, the individual’s primary need must be for health, and not social, care – i.e. of a type (nature) that Social Services could not be expected to provide, and/or over and above the provision of accommodation (intense, complex, unpredictable). The Checklist and Decision Support Tool were developed to assist Commissioners in applying the eligibility criteria consistently.
Find out more about the Checklist assessment here!
Avoid common mistakes and ensure your relative makes it through the Checklist to full assessment.
Don’t let the DST for your relative become a tick-box exercise!
Part two of this series, Needs of a “Wholly Different Category”, examined the nature of Ms. Coughlan’s needs and the type of services required to meet them. Today we shall apply the Intensity, Complexity and Unpredictability criteria to the evidence gathered, to see whether Ms. Coughlan’s needs can be described as merely ancillary and incidental to the provision of accommodation.
IMPORTANT – It must be acknowledged that the Court of Appeal did not delve into the inherent complexity of these questions or make any suggestion as to how they might be answered. Many people believe that the National Framework and Decision Support Tool fail to comply with the Coughlan judgment, in setting the bar too high and making the criteria too subjective. For the purposes of this article, we shall use the criteria set out in the National Framework, as, however valid people’s concerns, these are the criteria that will be used by the NHS to assess you or your relative today.
Intensity
This relates to both the extent (‘quantity’) and severity (degree) of the needs and the support required to meet them, including the need for sustained/ongoing care (‘continuity’).
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.
Intermittent catheterisation is performed by nursing auxiliaries every three hours; this intervention takes approximately 10 minutes plus additional time for hoisting. Ms. Coughlan requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night.
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 is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h).
Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. 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 is assisted to stand twice per week using a special frame.
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 after administration is necessary.
Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension. 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. Autonomic dysreflexia exists on a continuum and is highly unpredictable. Mitigating the risk of AD attack requires expert care, 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.
Ms. Coughlan’s needs do not appear to be particularly intense. The majority are met via routine care planning and her condition now appears relatively stable. Ms. Coughlan does not require a large number of interventions during a 24-hour period (quantity) and those interventions do not require an increased amount of time or staff to perform. However, it must be acknowledged that the risk of autonomic dysreflexia is severe (degree) and the skilled care required to mitigate this risk is continuous (continuity).
Complexity
This is concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interactions between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as when a physical health need results in the individual developing a mental health need.
Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections.
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 is doubly incontinent and is unable to relieve herself without skilled assistance. 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. 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 their 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. Autonomic 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. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential.
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 autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic attack would be extremely high, and healing would be complex. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is turned (side-to-side) 3-times throughout the night. 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.
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. Ms. Coughlan is assisted to stand twice per week using a special frame. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension.
Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and Iron. 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 does not respond to, and 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 after administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation, which would increase the risk of further autonomic attack.
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.
Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Pamela 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 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. There is a high degree of interrelation between continence care and autonomic dysreflexia; expert management of bladder and bowels is essential. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. Autonomic dysreflexia exists on a continuum. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.
Ms. Coughlan’s needs are complex owing to the risks arising from autonomic dysreflexia and the particular skills required to mitigate those risks. There is a high degree of interaction between the domains of Continence, Skin, Mobility, Medications and Other Significant Needs, resulting in the need for skilled care, monitoring and anticipation. The management of symptoms in the event of AD attack, including the administration of emergency nifedipine, requires specific training, knowledge and skill. Interventions to empty the bladder and bowel are invasive and complex due to the increased risk of AD attack at such times. Although continence interventions are routinely planned and delivered, additional care outside these times may be required and is urgent owing to the increased risk of AD attack when the bladder or bowel is full. Autonomic dysreflexia is a rare condition, unique to cervical spinal cord injured people; those meeting the needs of such an individual require specific training and additional knowledge and skill. Even experienced clinicians are often unfamiliar with the condition, highlighting the peculiarity of the needs and the skills required to meet them.
Unpredictability
This describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the individual’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.
Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension. 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.
Ms. Coughlan’s needs are largely predictable. There is no evidence to suggest her condition is unstable or rapidly deteriorating. Ms. Coughlan’s needs are met via routine care planning and there is no evidence to suggest these fluctuate day-to-day. However, it must be acknowledged that autonomic dysreflexia is, by its very nature, unpredictable. While the frequency and severity of attack can be mitigated by skilled care, the risk of future occurrence cannot be permanently removed or eliminated.
CONCLUSION
Having considered the intensity, complexity and unpredictability of Ms. Coughlan’s needs, we conclude they cannot be described as merely ancillary or incidental to the provision of accommodation. While Ms. Coughlan does not require an increased number of interventions throughout a 24-hour period, the effects of her injury are severe. The unique challenges and interactions arising from a cervical spinal cord injury require the continuous provision of skilled care, the need for which cannot be permanently removed or eliminated. Without the provision of such daily care, Ms. Coughlan would be at risk of serious injury and death. Her primary need is for the careful management of her physical health to avoid serious medical complications, which can arise rapidly and unpredictably. Should such complications occur, immediate, skilled response will be required. Ms. Coughlan’s needs clearly present a degree of complexity that exceeds the lawful remit of Social Services. There is a degree of intensity and unpredictability to Ms. Coughlan’s needs, owing to the nature of autonomic dysreflexia.
Explaining the Vital Difference Between Health & Social Care Needs: Part 1
Explaining the Vital Difference Between Health & Social Care Needs: Part 2
Two decades after the Court of Appeal’s judgment, it would appear some people still do not accept Ms. Coughlan’s eligibility for NHS funding. Many Continuing Healthcare Assessors, and even senior staff within some Clinical Commissioning Groups, dispute the findings of the Court of Appeal, even going so far as to suggest the National Framework and Decision Support Tool are not suitable for spinal cord injured people. What lies beneath such assumptions is, we suggest, an ignorance of the severity of the needs arising from a cervical spinal cord injury and a lack of experience in caring for an individual with such an injury.
REMEMBER – The National Framework is clear that the professionals conducting the assessment must have the requisite knowledge, experience and understanding to enable them to accurately record and assess the needs. If you or your relative has a spinal cord injury, or another complex condition, you may want to ask the Clinical Commissioning Group to appoint a Special Advisor to inform the multi-disciplinary team conducting the assessment. Even if the CCG refuses to appoint such an individual, you can request this person attends the Independent Review Panel.
NOTE – You don’t have to fight this battle for CHC Funding alone. If you need professional help or advocacy support with your assessment, MDT, appeal or a retrospective review, or just want advice about the prospects of your case, visit our 1-2-1 support page.
We hope you have enjoyed this in-depth look at the Coughlan case. If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “contact us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.
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This series will be so useful for those starting out on the process of appeal. Thank you CTBD.
It is my opinion that the only way to overturn a decision is to do so by setting out your appeal in this format. Making arguments about impartiality/procedure or other breaches isn’t going to prove a PHN.
The NHS aren’t going to fund because of errors in administration. There was plenty of maladministration in our case and I did document it in my appeal, but at IRP the chairperson asked me before the hearing started, what I wanted to focus on. I said the evidence that I had provided that proved my father had a PHN.
An appeal of such importance requires research, evidence, analysis and presentation in a professional manner, such as this.
I recall being sent appeal questionnaires from CCG/CHC, with very small boxes to enter my reasons for appeal. The boxes weren’t big enough for me to enter my evidence and argument. (just enough space to write expletive thoughts about the disgraceful assessment!)
My appeal document amounted to twenty pages.
It would be useful to now look at how diseases such as Alzheimer’s/Dementia/Parkinson’s, when looking to present an appeal.
We all know that NHS/CHC is assessed on needs and not on a particular diagnosis or condition, but as diseases advance the impact that they have on all needs are hugely significant and being able to demonstrate this using the key characteristics is vital in the appeal process.
My father had suffered from Parkinson’s disease for many years, but in the final years of his life he also suffered from dementia, which completely overwhelmed his ability to function without the nursing care he needed to keep him safe. To receive a score of severe in the cognition domain, in my humble opinion impacts on every other domain. The disease meant he was impaired,confused,disorientated,agitated and distressed during his waking hours. For me this meant that he was unable to assess basic risks even with supervision. He needed prompting and assistance and was totally dependent on others to anticipate his basic needs and to protect him from harm, neglect and health deterioration. Factor in his immobility with a long history of falls and supra pubic catheter care and a non compliance with medication, then the argument for skilled intervention/care is undeniable.
This is just a fraction of how this terrible disease cruelly took my dad away from us. He died in an emaciated state as his physical, cognitive and mental health left him with a poor quality of life. We continue to read and hear about so many cases like this, that are denied funding.
His primary health need test statement was woefully inadequate in it’s regard to his needs, that were needed to keep him safe.
For me, these inadequacies gave me the opportunity to present my appeal in a similar manner we see here, that eventually led to my success. A bittersweet success that caused myself and my family unforgivable stress!
I would urge families to approach the appeal process as you would when completing a thesis/dissertation. Don’t waste your time filling in the questionnaires. Have a professional approach that demonstrates you know more (which you will do!) than they do.
Good Luck!