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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The underlying tone of this is to talk up the needs and eligibility of Pamela Coughlan, while at the same time talk down eligibility of elderly dementia residents in nursing homes.
This for example: “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… ” must be music to the CCGs’ ears!
I can’t speak for everyone, but it is way off the mark when considering my own dementia suffering mother’s needs over the years.
The article seems to imply that the SEVERE score given under ‘Other Significant Needs’ far outweighs the needs (regardless of how the score) of the other 12 Domains. This appears to be the attitude of many CCG assessors too.
This is nonsensical. If the needs of the 12 Domains really were not that important to eligibility, then why does the National Framework process dictate assessors spend so much time assessing them all?
Hi Andrew – thanks for your comments.
Each CHC case is unique. You provide no detail about your mother’s needs, so it is not possible for us to comment on the quality and quantity of those needs, and how they might compare to those of Ms. Coughlan.
This article is intended to help people understand the Coughlan Judgement, from a legal and clinical perspective. Many people wrongly consider their relative’s needs to be equal or greater to Ms. Coughlan’s because they do not understand the clinical facts of her case. This article aimed to provide some clinical detail about Ms. Coughlan’s needs, which is often lacking from discussions about her case. We also wanted to provide some guidance on the type of detail we would expect to see in an analysis of the four Key Characteristics, as this crucial part of the DST is often sorely overlooked. We hope our readers will be able to use our analysis here as a template and ensure adequate detail is provided in their relative’s case, whatever their needs.
As we take great pains to explain, it is the primary health need test, and not the assessed levels of need, which determine eligibility, without exception. The assessed levels of need quantify the degree of the needs in eleven key areas. The primary health need test analyses the quality and quantity of interventions required to meet the assessed needs. In the instance of one PRIORITY or two SEVERE levels of need, the quality and quantity of interventions required will exceed the lawful limit of the local authority due to their nature, intensity, complexity and/or unpredictability. In all other cases, regardless of the assessed levels of need, eligibility cannot be decided without applying the primary health need test. Ms. Coughlan is eligible for CHC funding owing to the nature, intensity, complexity and unpredictability of her needs, not because she is assessed as presenting with a SEVERE level of need in the twelfth domain. To suggest otherwise is plainly incorrect and belies a misunderstanding of the above article, and the eligibility criteria generally.
Of course, there will be many thousands of individuals with dementia who DO qualify for CHC funding; we assist their families every day. However, it is important to emphasise that the reason for their eligibility is not the fact they are diagnosed with dementia or the fact they require care in a 24-hour setting. It is the specific needs arising from their diagnosis, unique to them, that matter. From the perspective of the law, there is a world of difference between someone who needs help, or even full assistance, to meet their activities of daily living, and someone who suffers from autonomic dysreflexia. This is a clinical fact and to suggest otherwise is unhelpful.
The CHC process is arduous, difficult, drawn out and often traumatic. We hear from many families who have battled their local CCG for YEARS, often spending thousands of pounds in the process, when their relative is simply not eligible for CHC, according to the law. There is much talk online about Ms. Coughlan and how her needs are “not that great” when compared with the majority of people in nursing homes. This is misguided and requires correction. To encourage people who have no chance of being successful to engage in the CHC process is unethical, improper and a waste of public resources. We will always be open and honest with people who seek our help regarding their prospects of success, based on our extensive experience and understanding of the law. Kind regards
My mother’s needs were not easily comparable with Ms Coughlan. The CCG scored her 1 Severe for Cognition, 5 High, 4 Moderate, 1 Low. They then proceeded to downplay them with the usual arguments of the care being routine, well managed and predominantly social care. While I still strongly believe she scored 3 Severe (Cognition, Mobility, Nutrition).
Don’t misunderstand me, I accept 100% that Ms Coughlan was eligible and it is preposterous for anyone to suggest otherwise.
I don’t claim to be a clinical expert on her condition and do not question your assessment of her needs. I do feel your article was over generalising and downplaying when referring to “many sufferers of Dementia, Alzheimer’s and stroke”. I also disagree strongly that the interventions administered to these individuals, are just for enabling daily living and are not health care. The definition for ‘health care’ in the National Framework is pretty clear. CCGs like to muddle the two to deny eligibility.
I have a list of Ms Coughlan’s daily care services (Pamsday), signed off by herself, where her daily interventions are just a small fraction of those administered to my mother. If taken in isolation, they could be seen as few and rather routine (I feel routine is such a subjective term). It is only when you take into account her severe condition and potential risk to herself, that each intervention then takes on extra importance.
This series of articles has attracted quite a lot of interest and discussion, which I’m so pleased about. Keep it going. Everyone’s opinion is valued.
I welcome more discussion on how Dementia, Parkinson’s disease and Alzheimer’s, particularly the latter stages and the impact on the needs of sufferers. This is where I agree with Andrew’s comment on “interventions”. All of my late father’s needs during the end stages of Parkinson’s disease/Dementia were healthcare needs/interventions
I remember clearly arguing that such routine interventions like feeding and continence care were still healthcare needs. Without someone carefully feeding my father to ensure he swallowed his food properly, he was at huge risk of aspiration of food & death.
His continence needs were deemed “managed needs”, but again he was at huge risk of infection without “skilled” intervention, particularly during the episodes when (without warning) he pulled his supra pubic catheter out and also required rectal clearance. These might be a “routine” events but they relate to the health, not social care.
Without skilled staff to do these tasks my father was at huge risk.
As with many sufferers of dementia particularly in the latter stages of the disease, the behaviour and emotional distress has a devastating impact their physical health. Paranoia, hallucinations and delusions associated with the disease require around the clock nursing care to keep the individual safe.
The argument will continue just as it has done for many years.
Revisiting Angela Sherman’s ” On the edge interviews”, shows that little has changed in the terms of the argument around healthcare v social need, because it is so subjective.
Having now had the personal experience of being inside a nursing home daily for two years plus, I know that many dementia sufferers are not being funded, when it is clear to me that they qualify but aren’t assessed, because no one is asking for an assessment to be done.
Not being able to safely assess your own environment, not being able to safely feed yourself and look after your own health poses huge risk.
Gosh, I could go on and on!!
Angela was right when she said that only those who have someone to fight on their behalf, will stand a chance of being funded and even then the system will fight you all the way!
Please everyone, don’t forget that Retired Rear Admiral Philip Mathias is taking legal action against the Government and NHS England to expose the scandal that is NHS CHC.
Please continue to pledge!
“Ms. Coughlan is eligible for CHC funding owing to the nature, intensity, complexity and unpredictability of her needs, not because she is assessed as presenting with a SEVERE level of need in the twelfth domain.” You do understand that there is a direct connection between the ‘Care Domains’ & their scores and the resulting analysis for the ‘4 Characteristics’? The two do not sit in isolation of each other. If Ms Coughlan had scored ‘LOW’ instead of ‘SEVERE’, then you would not have reached the same conclusions when it came to assessing the 4 characteristics and her eligibility.
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
Hi Angela,
My IRP was on Jan 25th, exactly a week after my mother passed away. It was a virtual meeting using ‘Microsoft Teams meeting’. My knowledge of CHC and the National Framework has been improving over the years. The evidence may have been the same, but my understanding and knowledge of it and how to best to apply it to show eligibility had greatly improved over time. The CCGs can’t be trusted to do this, so it is left to us. Also a lot that I argued at MDT and LRP fell on death ears regardless of how compelling it was, while the IRP appear to have decided to listen. I am good at putting arguments in writing, but not so confident at public speaking. I therefore put a lot of effort into my written submission. It was very rigorous, with each section both building upon and also being supported by the previous section. The sections were: 1. Introduction, 2. Care domains, 3. Health & social care definitions, 4. Four key characteristics, 5. CHC eligibility (applying the Primary Health Needs test). I feel it is critical to understand the linkage between each of these sections as they are all interconnected. The output from the previous section, can be used as input into the next (sorry I come from a software background).
Hi Angela,
To further clarify my earlier comment on “feeding information into the ‘Primary Health Needs” test.”, The test has two conditions known as the ‘quantity’ and ‘quality’ tests respectively. You only need to satisfy one of the two conditions to be eligible for CHC.
Now if you look at the 4 key indicators, for example, the national framework describes ‘Intensity’ as “relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’).”.
For ‘Intensity, I answered the PG.3 questions demonstrating 60 daily healthcare interventions needed 24/7, administering to severe needs, showing how critical the interventions were. Then in the ‘CHC Eligibility’ section I reference the earlier section to answer the question: “are the nursing or other health services required by the individual no more than incidental or ancillary to the provision of accommodation” (I also compared them with the social care services she was receiving).
Anyone setting out on this process, without specialist help will be heartened to know that it is possible to succeed with determination & perseverance!
Your comment is so helpful…..”My understanding & knowledge of it & how to to apply it to prove eligibility greatly improved over time”
I can only reiterate what you have said about how to set out an IRP appeal.
As I reflect on a successful appeal, I know that the hundreds of hours I spent on researching and preparing the appeal document/evidence was the key to my success.
I understand this is not possible for lots of busy families and this is where CCG’s gain the unfair advantage!
Hi Angela,
My IRP meeting was by phone because the internet connection kept failing. The Chairperson was very patient about this and full procedure was followed and I have no complaints about how NHS England carried out the meeting. From my experience, I don’t think your chance of success will be affected by having to explain your case by phone.
Hi Andrew,
I received a letter with exactly the same wording as yours. I found that the CCG delayed while they looked at whether it was right “on principle” to reimburse and pay future fees. But this was really clutching at straws. After a month I rang them up and left a message saying that I would get back to NHS England if they didn’t get a move on. The very next day they emailed me and said that they had just been able to contact the care home with regards repayment of fees and that everything was now progressing.
The thing that slowed things down further was that the care home was slow sending the invoices to the CCG, who then paid the care home the full amount. And then the care home was slow repaying the amount to us (possibly due to Covid and Christmas).
It was nearly 4 months from the date of the decision that the full refund was paid.
So, unless NHS England made a complete mess of the procedure of the meeting (which is very unlikely), the CCG will have to pay you.
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!
Hi Michelle,
I think you are right that this should now be a formality, but from past experience, I feel that if there is any sort of loophole, the CCG are inclined try to squeeze through it.
I am also uncertain how long a period this covers. My mother’s funding was cut in August 2019 and there has never been another assessment since. It is not clear whether I will get just 12 months funding reimbursed, or the whole amount right up to Jan 18th 2021. I can’t find anything in the national framework to clarify this.
I was also wondering how long it takes between NHS England’s letter to me saying CCG was ‘unsound’, and then the CCG finally confirming they accept it. It’s coming up to a week since I heard from NHS England.
Hi Andrew,
From my experience the response from CCG following the decision by NHS England was within weeks. However, that was pre-pandemic! I would chase your CCG if you don’t hear anything within the next two weeks.
You say that your mother’s funding was “cut” in August 2019. This can only have taken place following a review/MDT and a further DST, so I am assuming that your appeal would have been following this decision to stop funding.
So with a successful outcome from NHS England there is no reason to believe that the following 17/18 months will be refunded. The decision taken by CHC/CCG to remove funding at that point has now been judged wrong and your mother would have been funded up until her death, had it not been for the incompetence of the CHC assessment.
Hi Michelle,
You wrote “he tax was withheld by CCG but I applied to HMRC using form R40 and recovered it.”. This has got me wonder what the tax situation is in relation to the recovered funds. If I had overturned their decision while my mother was still alive, there would be no tax situation to worry about, but as we are now going through probate, I find it rather confusing.
Hi Andrew,
I perhaps didn’t make my comments very clear regarding Tax.
In brief, when fees are recovered, you are entitled to interest on the sum restored. This is at RPI, although there’s been plenty of argument that it should be at 8% BUT, Tax at 20% is withheld by CCG’s in case HMRC decides to call in the tax.
As my later father’s executor it was my duty to make sure that the process was carried out correctly and all monies in and out accounted for. At the point of restitution, HMRC had already advised that my late father’s estate was not due any tax….so for CCG to withhold 20% of the interest was yet another hurdle to overcome. My own CCG didn’t help me at all. It took me months to get answers to my emails and complaints, but I ended up submitting the Form R40 along with a letter and supporting evidence to claim the withheld tax. My father’s estate was refunded in full.
There’s further information on here to help you understand the process. Check the article titled……….
“Can I claim Interest on my refund of care fees paid”
You will see more of my comments, as I journeyed through the process!
Good luck
Hi Michelle, Interested to read that you were able to claim back the deducted tax. When I explained to HMRC last year that a CCG had done a similar thing with a repayment I was told that although they agreed it was wrong, there was nothing they could do about it. Have had a look at the R40 and can’t see an obvious way to apply that form to the amount they have withheld. Grateful for any advice you can offer…. Anne
Hi Anne,
If I were you I wouldn’t accept an answer like that from HMRC.
To be told they accepted it was wrong and then say there’s nothing to be done is totally unacceptable. I would want to know why nothing could be done? What reason have they to withhold it?
As I have said, as soon as my own CCG had restored the fees, they didn’t want to help me any further in the process, especially anything to do with the tax. I was pushed around different departments until I eventually received an email from their finance department telling me to use the form R40 to make a claim.
I understand what you say about how to complete the form and apply, because the form is not set up with this in mind!
I completed the basics as far as I could and then did a covering letter, attaching the outcome letter from CCG, together with copies of emails with the instructions that the finance dept had given me. It took months to get to this point and after further complaints to HMRC I was also awarded compensation for their failures!
I had documentation from HMRC to say that my father’s estate wasn’t due Tax, so it was just a case of pursuing them to recover the 20% that had been taken after he’d died and his affairs concluded.
Without fully understanding your own case, it is hard to help, but given the fact that they have admitted it is wrong, I would push ahead for a refund.
Good Luck