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Get Help Breaking Down the Decision Support Tool: Breathing Part 1

young lady standing in black white shirt with outstretched arms breathing fresh air

This series takes a detailed look at the domains of the Decision Support Tool (‘DST’). This week we examine the first three descriptors in the Breathing domain and help you to assess your or your relative’s “level of need” in this important domain.

Don’t miss part one of this series: Get Help Breaking Down the Decision Support Tool: An Overview

Breathing is one of only three domains in the DST that includes all six levels of need: ‘No Needs’, ‘Low’, ‘Moderate’, ‘High’, ‘Severe’ and ‘Priority’ (the other domains are Behaviour and Medications). This week we will look at the first three of those domains, which are by far the most common.

NOTE – The bar in this domain is set very high: even those with a diagnosed respiratory condition, who require the use of inhalers, or even oxygen, are often surprised to discover that they “only” present with a ‘Low’ or ‘Moderate’ level of need in the Breathing domain.

In the 2012 version of the DST, the Breathing domain was near the end of the assessment, at domain number 9. The 2018 revisions reordered the domains of the DST, with Breathing coming first. Its new proximity to the Nutrition domain (number 2) is important, as individuals who have swallowing difficulties are at higher risk of suffering aspiration (inhalation of food or fluid particles into the lungs), which may cause infection and breathing difficulties. For those with existing breathing problems due to an underlying condition, aspiration is likely to cause increased exacerbations and complexity.

Help us spread the word about CHC: the NHS’s “best kept secret”!

IMPORTANT – In this domain, and several others in the DST, the term “daily living activities” is crucial. Whether or not symptoms of breathlessness are impacting on these activities, and to what degree, is a deciding factor in assessing the level of need. Therefore, it’s really important to understand that when the NHS refers to “daily living activities” in this domain, it usually means the following:

  • Eating
  • Drinking
  • Moving around (including manual handling, e.g., repositioning)
  • Going to the toilet
  • Talking/communicating

New to CHC?  Feeling overwhelmed?  This is a good place to start.

The following clinical factors are relevant to the assessment of NO, LOW or MODERATE level needs in this domain:

  • No problems with breathing.
  • Mild-moderate shortness of breath (SOB), breathlessness or difficulty in breathing (DIB).
  • Is this due to a chronic (long term) or acute (short term) condition?
  • Consider diagnosis of heart/circulatory problems, COPD, COAD, asthma, bronchitis, pneumonia, or any other condition that might impact on breathing.
  • Medication prescribed and route of delivery: steroids, inhalers, nebulisers.
  • Is the prescribed treatment effective, i.e., does it relieve symptoms of breathlessness?
  • Is medication prescribed routinely (at the same time each day) or as-required (PRN)?
  • Can the person communicate symptoms of breathlessness, or does this require anticipation?
  • Does shortness of breath occur on exertion and/or at rest?
  • Does shortness of breath impact on other domains, e.g., Mobility, Nutrition, Medication, Communication? (“Daily living activities”)
  • Is there a risk of aspiration? Is the Speech & Language team involved?
  • Can the person cough and expectorate secretions effectively?
  • Does the person suffer respiratory tract infections? Are these recurrent? Do they respond to prescribed antibiotics?
  • Does the person suffer from anxiety and/or panic attacks, which impact their breathing?

NOTE – A respiratory tract infection will usually only impact the level of need in this domain if it results in shortness of breath and/or an exacerbation of an underlying condition (e.g. COPD). A person who suffers a chest infection, or even recurrent infections, but does not experience any shortness of breath, will be usually assessed as having ‘No Needs’. In our experience, some Independent Review Panels (IRP) will assess a ‘Low’ level of need due to respiratory tract infections, but there is no hard-and-fast rule.

If your relative is due to be assessed for CHC, make sure you’re fully prepared using our helpful guides:

Waiting for a checklist? Avoid these common mistakes

Understanding the checklist

What happens at the MDT?

Preparing for the MDT

Don’t let the DST become a tick-box exercise

Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your relative’s assessment.

NO NEEDS

Normal breathing, no issues with shortness of breath.
Key Factors

No evidence of breathlessness

Does not require the use of any inhalants to aid breathing

CASE STUDY 1 – NO NEEDS

Mrs. X is not diagnosed with any long-standing respiratory or cardiac condition which would give rise to any breathlessness symptoms.

She is not noted to suffer with any breathing difficulties. She has a history of respiratory tract infections, but none has been noted in the past 6 months. Her chest sounded crackly on the day of assessment, but Mrs. X did not appear short of breath.

Mrs. X presents with NO NEEDS as she has normal breathing and no issues with shortness of breath.

IMPORTANT – Note that Mrs. X is assessed as having ‘No Needs’, despite having a history of chest infections and sounding “crackly” at the assessment. A diagnosis of respiratory tract infections and/or symptoms of chestiness or coughing may not necessarily indicate difficulty in breathing, for the purposes of the DST. If the person recovers following a course of antibiotic treatment, does not suffer shortness of breath and does not require the use of an inhaler, it is unlikely this will impact their assessed level of need in this domain.

CASE STUDY 2 – NO NEEDS

Mr. X has a history of Tuberculosis and it was reported by family that he suffered with variable breathlessness which required him to stop and rest whilst mobilising.

Prior to admission to the care home, Mr. X was mobile with assistance. However, since Mr. X was discharged from hospital, he is no longer able to mobilise and is nursed permanently in bed for his own comfort. There is no evidence to suggest Mr. X suffers with breathlessness during any intervention and thus a level of ‘No Needs’ would be appropriate.

Mr X presents with NO NEEDS as he has normal breathing and no issues with shortness of breath.

IMPORTANT – Mr. X does suffer some shortness of breath when moving around due to a history of Tuberculosis. If the DST had been completed while he lived at home, Mr. X would have been assessed as having a ‘Low’ level of need in this domain. However, since a recent admission to hospital, Mr. X has been unable to mobilise and is nursed permanently in bed. Consequently, he no longer experiences breathlessness and presents with ‘No Needs’ in this domain. This is a good example of how a deterioration in the person’s physical health may sometimes lead to a reduction in their assessed level of need on the DST.

LOW

Shortness of breath or a condition which may require the use of inhalers or a nebuliser and has no impact on daily living activities.

OR

Episodes of breathlessness that readily respond to management and have no impact on daily living activities.
Key Factors

Some episodes of breathlessness, responsive to rest/medication

May require the use of and inhaler and/or nebuliser

Daily living activities not affected

CASE STUDY 1 – LOW

Mr. X has a diagnosis of COPD; he takes both a nasal spray (Flixonase 0.005%) and inhalers (Fostair, Ventolin, Titropium) throughout a 24-hour period. At this present time, he self-administers the inhalers when indicated by senior care staff at appropriate times.

His condition would appear to be well-managed and he does not present with breathlessness at rest. On occasion, Mr. X would become breathless when mobilising longer distances; however, he now uses a wheelchair which has reduced these symptoms.

Mr. X presents with a LOW level of need as he suffers shortness of breath and a condition (COPD) which may require the use of inhalers or a nebuliser and has no impact on daily living activities.

NOTE – Mr. X uses a wheelchair for longer distances. Were he fully ambulant, this might have the effect of increasing his level of need to MODERATE, as he would present with more frequent or severe bouts of breathlessness and his “daily living activities” would be affected.

CASE STUDY 2 – LOW

Mrs. X has no history of breathing problems or shortness of breath. However, she can be observed panting at times; this is related to feelings of anxiety. Mrs. X is encouraged to take slow breaths and is able to settle soon after. Staff monitor her breathing pattern daily and encourage her to sit and relax when she becomes restless or anxious, which appears to be effective.

Mrs. X presents with a LOW level of need as she suffers episodes of breathlessness that readily respond to management and have no impact on daily living activities.

MODERATE

Shortness of breath or a condition which may require the use of inhalers or a nebuliser and limit some daily living activities.

OR

Episodes of breathlessness that do not consistently respond to management and limit some daily living activities.

OR

Requires any of the following:

low level oxygen therapy (24%).

room air ventilators via a facial or nasal mask.

other therapeutic appliances to maintain airflow where individual can still spontaneously breathe e.g. CPAP (Continuous Positive Airways Pressure) to manage obstructive apnoea during sleep.
Key Factors

Some episodes of breathlessness, usually, but not always, responsive to rest/medication

May require the use of an inhaler and/or nebuliser and/or oxygen via cannula

Some daily living activities affected (e.g., mobilising)

Low-level oxygen or ventilation to maintain airflow, but can always breathe spontaneously

CASE STUDY 1 – MODERATE

Mr. X is wheezy and breathless when exerting himself, for example when he tries to propel himself in his wheelchair. Due to advanced dementia, he needs encouragement to rest and full assistance to use his inhaler. He is not usually breathless at rest but is sometimes observed to be slightly breathless when eating. He needs 1:1 supervision at mealtimes and prompts to take his time.

Mr. X requires Salbutamol inhaler PRN, which staff need to administer for him. He is largely unable to express his needs, even if he is having problems with his breathing.

He has chest infections in the winter months, which impact on his breathing. Antibiotics are prescribed by the GP, usually with good effect.

Mr. X experiences excess saliva in his mouth and has a diagnosis of dysphagia (difficulty swallowing). His fluids are thickened. He experienced a recent aspiration pneumonia, requiring hospital admission and antibiotic therapy.

Mr. X was observed to have noisy breathing today and was experiencing profuse salivation.

Mr. X presents with a MODERATE level of need as he experiences shortness of breath or a condition which may require the use of inhalers or a nebuliser and limit some daily living activities.

NOTE – Mr. X “only” presents with a ‘Moderate’ level of need. However, there is considerable interaction (complexity) between his needs in the domains of Breathing and Nutrition, due to excess saliva and swallowing difficulties which give rise to a high risk of aspiration. Mr. X has already suffered an aspiration pneumonia and is vulnerable to further infection, which would lead to exacerbations of breathlessness and possible complications. He also suffers from dementia and is unable to communicate his needs, meaning he is reliant on staff to monitor his symptoms and administer his inhaler as required. These factors should be carefully considered in the analysis of the four Key Characteristics. This is a good example of why the assessed level of need does not always have to be ‘High’ (or ‘Severe’ or ‘Priority’) to have a considerable impact on the overall assessment, and why the Key Characteristics really are the key to understanding the eligibility criteria.

PART 1 – Looking At The 4 Key Indicators: Unlocking the Basics

PART 2 – Looking At The 4 Key Indicators: Gathering Pieces of Evidence

PART 3 – Looking At  The 4 The Key Indicators: Completing the Jigsaw

PART 4 – Looking At The 4 The Key Indicators: Drafting Your Conclusions

CASE STUDY 2 – MODERATE

Mrs. X has a history of bilateral pulmonary embolism and takes anticoagulant therapy daily to prevent further emboli. This has impacted on her breathing.

Mrs X is short of breath on exertion and occasionally at rest. Her lips and fingers can often be blue and her average blood saturations are 95% on room air. When she is feeling breathless, she needs staff to help her to sit upright and provide reassurance.

Community matron and carers report they have witnessed the shortness of breath, especially when moving and eating.

Mrs X presents with a MODERATE level of need as she suffers episodes of breathlessness that do not consistently respond to management and limit some daily living activities.

CASE STUDY 3 – MODERATE

Mr. X has a diagnosis of obstructive and central sleep apnoea and has used a CPAP (Continuous Positive Airways Pressure) machine overnight for several years.

He needs staff to fit the mask securely when he goes to bed and ensure the CPAP machine is working correctly. He needs staff to check on him and the machine at regular intervals throughout the night to ensure the mask remains in place. The staff report no problems or concerns with the CPAP machine since admission (6 months).

Mr. X is slightly breathless on exertion; however, there are no nebulisers or inhalers prescribed.

Mr. X presents with a MODERATE level of need as he requires a therapeutic appliance to maintain airflow where he can still spontaneously breathe e.g., CPAP (Continuous Positive Airways Pressure) to manage obstructive apnoea during sleep.

We hope this has helped you to understand the first three levels of need in the Breathing domain. Don’t miss part 2, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 Support page.

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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Do you know the difference between the National Framework and the Standing Rules?

happy senior mother and adult daughter rest on sofa

Care to be Different are here to answer your questions! We are always happy to receive requests for articles from our insightful readers. This week, we take a look at how the National Framework interacts with the law, in response to this question from one of our readers:

“Dear Care to be Different, it would be really helpful if you could shed some light on the link between the National Framework, the CCG Standing Rules and the legal limit of a local authority referenced in section 21(7) of the Standing Rules (legislation).” 

If you are engaged in the assessment and/or appeal process for NHS Continuing Healthcare funding, for yourself or on behalf of a relative you will likely be familiar with the National Framework for NHS Continuing Healthcare Funding and NHS Funded Nursing Care (“the National Framework”).

Currently in its third version (2007, 2012, 2018), the National Framework provides guidance to Clinical Commissioning Groups (CCGs) – the local NHS body responsible for medical services in your area – to ensure compliance with the law when assessing individuals for ongoing NHS funding in the community (CHC).

As we considered in our recent three-part series on the subject, the National Framework and Decision Support Tool were drafted in response to the 1999 Court of Appeal Case, R. v. North and East Devon Health Authority, ex parte Coughlan – often referred to as the Coughlan Judgment – and the Court’s comments about the quality and quantity of care that Social Services could be expected to provide.

For more information, read our in-depth series about the 1999 Coughlan Judgment:

The Coughlan Judgment: Part 1 – But Pamela Coughlan is not really eligible for CHC is she?

The Coughlan Judgment: Part 2 – Needs of a wholly different category

The Coughlan Judgment: Part 3 – Ancillary and incidental to the provision of accommodation

As many a frustrated CHC applicant will have discovered, the National Framework is only guidance and is not legally-binding.  However, local commissioners (health and social care) are required to “have regard” to the National Framework, as failure to do so may result in them breaking the law.

Paragraphs 6 and 7 of the Executive Summary of the National Framework explain the interplay between guidance and legislation:

“This National Framework is underpinned by Standing Rules Regulations (2), issued under the National Health Service Act 2006 (1). These regulations, referred to henceforth as the Standing Rules, require Clinical Commissioning Groups (CCGs) to have regard to the National Framework.

This revised National Framework takes account of legislative changes brought about by the Care Act 2014 (3), which preserves the existing boundary and limits of local authority responsibility in relation to the provision of nursing and/or healthcare.”

The Executive Summary refers to three pieces of legislation, all of which underpin the provisions of the National Framework:

  1. National Health Service Act 2006
  1. The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012
  1. Care Act 2014

The Health Act 2006 is a wide-ranging Act of Parliament, which, as well as banning smoking in public places, includes provisions about the recovery of National Health Service costs in England and Wales. The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, typically referred to as the “Standing Rules”, came into force in April 2013. The Standing Rules, drafted by the then Health Secretary under powers conferred by the Health Acts of 2006 and 2012, offer specific guidance to local commissioners about the provision of medical services.

The Care Act 2014 intended to improve the delivery of social care services and the working of the adult social care system, by bringing together several separate pieces of health and social care legislation. Importantly, the Care Act attempts to define the “lawful limit” of a Local Authority when meeting the needs of individuals in the community. All three texts help to define the lawful division between health and social care.

REMEMBER – The provisions of the National Framework are not legally-binding, but “having regard” to them will ensure CCGs comply with the legislation referred to in the Executive Summary.

The Standing Rules

Standing Rules Regulations, 21.7: Duty of relevant bodies: assessment and provision of NHS Continuing Healthcare – sets out the general conditions under which an individual may qualify for fully funded NHS care in the community (CHC). Essentially, this section of the regulations repeats the Court of Appeal’s statement in the Coughlan Judgment about the type of community care local NHS commissioners are expected to fund:

“In deciding whether a person has a primary health need in accordance with paragraph (5)(b), a relevant body must consider whether the nursing or other health services required by that person are—

(a) where that person is, or is to be, accommodated in relevant premises, more than incidental or ancillary to the provision of accommodation which a social services authority is, or would be but for a person’s means, under a duty to provide; or

(b) of a nature beyond which a social services authority whose primary responsibility is to provide social services could be expected to provide, and, if it decides that the nursing or other health services required do, when considered in their totality, fall within sub-paragraph (a) or (b), it must decide that that person has a primary health need.”

Eligibility for Continuing Healthcare funding is dependent on the individual’s “primary need”.  I.e., are the majority of the services required, or is the overriding need, medical or social in nature? Do the quantity and/or quality of services required exceed those which could reasonably be expected to be provided by medically unskilled carers?

While the Court of Appeal’s statements offer some guidance about the criteria for determining a primary need for healthcare, in practice they were difficult to apply and open to interpretation. Stark differences in the application of the “primary health need test” around the country highlighted the need for a nationally defined set of criteria, against which all applicants could be considered fairly. The introduction of the National Framework (guidance) and Decision Support Tool (assessment tool) in 2007 intended to streamline the CHC assessment process and ensure fair and consistent decision-making, regardless of locality.

The Decision Support Tool helps CCGs to assess the degree (quantity) of a person’s needs in 11 key areas, with a 12th category for additional needs. The primary health needs test – also referred to as the four Key Characteristics of nature, intensity, complexity and unpredictability – assists CCGs in analysing the type of services (quality) required to meet the individual’s assessed needs. By using the Decision Support Tool to apply the primary health need test, CCGs should be able to ensure compliance with the Coughlan Judgment, the Health Act and the Standing Rules.

The National Framework sets out the recommended process by which decisions on eligibility for CHC funding should be reached. While the Framework holds no legislative power in and of itself, failure to comply with its provisions may result in a CCG breaking one or more of the laws by which it is underpinned.

The Care Act 2014

While the Health Act and Standing Rules were aimed at health authorities (then PCTs, now CCGs), the Care Act 2014 is concerned with Social Services. Crucially, the Care Act attempts to define the type of services a Local Authority can reasonably be expected to provide, with reference to the Coughlan Judgment. In so doing, the Act clarifies the limits of Local Authority responsibility in relation to the provision of nursing and/or healthcare in the community.

Part 1, Section 1.1-2 of the Care Act outlines the general responsibilities of the Local Authority in promoting individual well-being:

“1. Promoting individual well-being

(1) The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being.

(2) “Well-being”, in relation to an individual, means that individual’s well-being so far as relating to any of the following—

(a) personal dignity (including treatment of the individual with respect);

(b) physical and mental health and emotional well-being;

(c) protection from abuse and neglect;

(d) control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided);

(e) participation in work, education, training or recreation;

(f) social and economic well-being;

(g) domestic, family and personal relationships;

(h) suitability of living accommodation;

(i) the individual’s contribution to society.”

Any of the needs listed above are considered within the lawful remit of the Local Authority to meet and would not be indicative of a need for healthcare. Where Continuing Healthcare funding assessments are concerned, the needs described at subsections 2. a), b) and c) are the most hotly debated.

The vast majority of individuals who receive 24-hour care in a residential setting will require full or partial assistance to meet some or all of the needs described above. When they are assessed and found not to meet the criteria for CHC funding, the CCG will use interpretations of the above legislation to support its decision.

The requirement for 24-hour care in a residential or nursing home – to include assistance with, or full provision of, washing, dressing, eating, drinking, moving around safely, going to the toilet, maintaining skin health, treating minor injuries and taking prescribed medications – would be considered merely ancillary and incidental to the provision of accommodation, because the needs fall under the categories described under subsection 2, a), b) and c), above. A person who is cognitively impaired is also likely to require full or partial assistance to meet the needs described under subsection 2, e) through h).

Part 1, Section 22 of the Care Act addresses certain exceptions whereby the Local Authority would be responsible for the provision of health services in the community. This section of the Act is crucial to considerations for CHC funding and is specifically referenced in the Executive Summary of the National Framework as a footnote.

Part 1, Section 22.1: Exception for provision of health services – repeats the Court of Appeal’s statements in the Coughlan Judgment about the quality and quantity of required services, outlining those circumstances in which the Local Authority would reasonably be expected to provide health services as part of a package of care:

“(1) A local authority may not meet needs under sections 18 to 20 by providing or arranging for the provision of a service or facility that is required to be provided under the National Health Service Act 2006 unless—

(a) doing so would be merely incidental or ancillary to doing something else to meet needs under those sections, and

(b) the service or facility in question would be of a nature that the local authority could be expected to provide.”

Part 1, Section 22.3-4: Exception for provision of health services – reminds the Local Authority that it cannot ordinarily provide nursing care or arrange for its provision in the community (e.g. care by a District Nurse).  Subsection 4, however, describes the particular circumstances whereby the Local Authority may be expected to provide nursing services as part of an ongoing package of care:

“(3) A local authority may not meet needs under sections 18 to 20 by providing or arranging for the provision of nursing care by a registered nurse.

(4) But a local authority may, despite the prohibitions in subsections (1) and (3), arrange for the provision of accommodation together with the provision of nursing care by a registered nurse if—

(a) the authority has obtained consent for it to arrange for the provision of the nursing care from whichever clinical commissioning group regulations require, or

(b) the case is urgent and the arrangements for accommodation are only temporary.”

The completion of the Decision Support Tool by a Multi-Disciplinary Team (MDT) of health and social care professionals, in accordance with the process outlined in the National Framework, determines the individual’s primary need (health or social care) and, therefore, responsibility for the provision of services (CCG or Local Authority). Once an individual is found not to meet the criteria for CHC funding, the requirement at section 22.4 a), for the Local Authority to obtain consent from the relevant CCG to deliver nursing care, has been met. The Local Authority can thus lawfully provide nursing services as part of an ongoing package of care and the individual receiving that care can be means-tested to assess their financial contribution.

Part 1, Section 22.5-6: Exception for provision of health services – if an individual has been placed in a care setting by Social Services, subsection 5 reminds the Local Authority of its obligation to seek the CCG’s assessment as to the primary need and thus responsibility for service provision, as soon as is reasonably possible.  Subsection 6 determines that the Local Authority must engage with such assessments as required and have a policy for resolving disagreements about the responsible commissioner with the CCG.

“(5) In a case to which subsection (4)(b) applies, as soon as is feasible after the temporary arrangements are made, the local authority must seek to obtain the consent mentioned in subsection (4)(a).

(6) Regulations may require a local authority—

(a) to be involved in the specified manner in processes for assessing a person’s needs for health care and for deciding how those needs should be met;

(b) to make arrangements for determining disputes between the authority and a clinical commissioning group or the National Health Service Commissioning Board about whether or not a service or facility is required to be provided under the National Health Service Act 2006.”

Part 1, Section 22.8: Exception for provision of health services – gives further clarification as to when nursing services may be provided by a Local Authority, once an individual has been placed in a care setting:

“(8) A reference to the provision of nursing care by a registered nurse is a reference to the provision by a registered nurse of a service involving—

(a) the provision of care, or

(b) the planning, supervision or delegation of the provision of care,

other than a service which, having regard to its nature and the circumstances in which it is provided, does not need to be provided by a registered nurse.”

So, if the nursing services provided could otherwise be delivered by a medically unskilled carer, and are only provided by a nurse because, for example, the person resides in a nursing home, then those services can be included in a social care package which can be means-tested. This section of the Care Act is routinely relied upon by CCGs to deny CHC funding to residents of nursing homes, many of whom will require provision, and/or planning, supervision or delegation, of care by a registered nurse.

Quick Take Away: Guidance vs. Legislation

  • In deciding whether care services are to be provided by the NHS or Local Authority, the CCG/Social Services must comply with the 2006 Health Act, 2012 Standing Rules and 2014 Care Act, all of which refer to the findings of the Court of Appeal in the 1999 Coughlan Judgment.
  • The National Framework and Decision Support Tool have been drafted to help health and social care commissioners comply with the above legislation when determining responsibility for the provision of health services in the community.
  • The National Framework sets out the recommended assessment and appeals’ process for CCGs to follow when making decisions about CHC funding.
  • The Decision Support Tool aids consistency and fairness of decision making when applying the primary health need test.
  • While the National Framework is not legally binding, the Standing Rules are.
  • The Standing Rules require CCGs to “have regard to” the guidance in the National Framework when determining the responsible commissioner and resolving disputes. Failure to do so may result in both authorities breaking one or all of the laws underpinning the National Framework, referred to in the Executive Summary (para. 6-7).

Thanks again to our website Reader for your contribution. We hope this answered your question. 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.

Remember: If  you need help understanding the National Framework , or want professional help or advocacy support with your assessment, or just need advice about the prospects of your case, visit our 1-2-1 support page.

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Part 3: Pamela Coughlan – Ancillary and Incidental to the Provision of Accommodation

Law cases and law books on a shelf

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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Part 2. Pamela Coughlan – Needs of a “wholly different category”

Royal court of justice

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.”
  1. 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!

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

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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How To Avoid Selling Your Home To Pay For Care…

Over the years the press has been full of heart-rending stories of families forced to sell their relative’s home to pay for care. Some have done so quite needlessly, unaware of the options available in terms of funding their relative’s care. This article tells you how to avoid these mistakes.

Many people automatically assume that they’ll have to sell their house to pay for long-term care. However, that’s not necessarily the case.

There’s a lot of misinformation circulating about this issue, and it causes a great deal of confusion and distress for families.

When the time comes for a relative to move into a care home, the first question that comes to mind is how will their care be funded? Sometimes, the need to place a relative into a care home is foreseeable as you watch them become more frail over a period of time while their care needs become more challenging. However, quite often, the need to find a care home happens unexpectedly, perhaps following hospital admission after a sudden stroke, accident or fall. The shift in circumstances or care needs, can see an individual go from living (independently) in their own home to requiring round-the-clock, 24 hour care. We recommend reading our book “How To Choose a Care Home”.

Being a resident in a care home comes with a cost.

Many people assume that if you have some savings or you own a property, you are expected to pay for your own care. This is not necessarily the case.

There are two types of nursing care funding:

  1. Fully-funded NHS care (NHS Continuing Healthcare) covers 100% of care fees and is paid by the NHS if your relative has a ‘Primary Health Need’. This means that their primary need for care is a health need – as opposed to a social care need. Social care is often described as ‘activities of daily living’, such as help with feeding, washing, hygiene and mobility.

If your relative doesn’t qualify for NHS Continuing Healthcare Funding, they should automatically be assessed for FNC.

  1. Funded Nursing Care (FNC) is a weekly allowance (currently £180.31) paid by the Clinical Commissioning Group directly to the care home, as a contribution towards the cost of your relative’s nursing care needs that are provided by a registered nurse, employed by the care home. For more information, read out blog: Don’t Miss Out On Funded Nursing Care!

If your relative is assessed as being ineligible for NHS Continuing Healthcare Funding and FNC, then they should be passed over to their Local Authority to be assessed for social care funding. Social care funding is means-tested (NHS Continuing Healthcare is not), so if your relative has over £23,250 in savings and capital, they will have to pay for their own care ie become ‘self-funding’ and have to meet the full cost of care themselves.

However, many of the families who contact us indicate that they have not received any accurate information about this from the health and social care authorities and are steered towards self-funding their care from the outset. NHS Continuing Healthcare is never mentioned.

If your relative has health needs, they should ALWAYS be assessed for NHS Continuing Healthcare BEFORE they’re assessed for FNC and means-tested social care.

For more information, read our blog: ‘Primary health need’ made simple – what does it really mean?

Here are some available funding options which you need to know:

1. Following discharge from hospital into a care home:

With effect from 1st September 2020, the Government (via the NHS) has put in place emergency funding to pay for the first 6 weeks of care. This period is designed to give families peace of mind whilst the NHS carry out an assessment of their care needs.

If an assessment for CHC is not done within this period, the NHS will have to make ongoing arrangements to fund the care fees until it is carried out and the outcome is notified to you.

Read our blog: Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

2. Entitlement to NHS Continuing Healthcare Funding:

As above, if your relative has predominantly healthcare needs, the NHS should pay for all their care (100%) through NHS Continuing Healthcare Funding. We recommend you request an assessment to determine eligibility for this funding as soon as possible after your relative is settled into their care home.

3. Consider Independent Financial Advice:

You can take independent financial advice to protect your assets, such as an Asset Protection Trust or a care payment plan benefit policy that will pay the monthly care home fees. However, financial advice comes at a cost, and we anticipate that most IFAs will not have come across the availability of NHS Continuing Healthcare Funding. No one can say whether an individual has to pay for their care until they’ve had an assessment to determine their eligibility for NHS Continuing Healthcare. So, bear this in mind before parting with funds and commission to an IFA.

4. Entering into a Deferred Payment Agreement (DPA):

If your relative is not eligible for NHS Continuing Healthcare Funding and is required by their Local Authority to contribute to the cost of their care, consider entering into a Deferred Payment Agreement (DPA) with them.

A DPA is an arrangement with the Local Authority whereby you can use the value of your property/home as security to defer paying long-term care fees.

The principal aim of the DPA is to stop individuals from being forced to sell their home to pay for their care during their lifetime.

In essence, what happens is that the LA will enter into an agreement with your relative (or their representative) and take over payment of the care home fees on their behalf in return for repayment at a later date. Think of it as a bridging loan or debt that is deferred. It still has to be repaid and is not written off, just postponed.

Repayment of the loan under the DPA is typically made either upon your relative’s death or when their home is eventually sold.

To protect their loan, the Local Authority will usually insist on taking a first legal charge on the property to ensure that there is adequate security out of the sale proceeds to recoup the care fees they’ve paid to the care home.

They may insist on getting an updated valuation survey as to the value of your relative’s property to ensure that the DPA is commercially viable. You may be expected to pay for this separately or as part of the administration charges.

The value of the charge is typically secured at around 70% to 80% of the value of the home. This margin is intended to allow for fluctuations in market value, payment of accruing interest, increasing cost of care, whilst hopefully, also giving the family some headroom to pay any expenses out of the sale proceeds and be left with a little equity balance. After all, the DPA has to be commercially viable for the Local Authority as it is sustainable for the family, if it is to work and meet the future (rising) cost of care.

In addition, Local Authorities can charge administrative and legal fees to cover the cost of setting up the DPA and the loan can accrue additional interest (capped by the Care Act 2014 at the national maximum interest rate which changes twice a year).

We strongly recommend that you read the DPA very carefully to make sure you understand your responsibilities and liability that you are taking on and your obligations to repay the loan promptly.

Tip: DPAs can be a lot of information to take in, so if in doubt, it is always best to seek legal advice.

Tip: It’s a good idea to check with any mortgage or loan company with an existing charge on your relative’s property first to make sure that they are comfortable with the Local Authority placing a charge on the property.

What happens next?

Once the DPA is established, the Local Authority will take over funding of the care home fees during the first 12 weeks of their care home placement.

During this time, the value of your relative’s property should be disregarded in any means-tested assessment. This is called the  ‘12-Week Property Disregard’ and is a period of grace to sort out their financial affairs and consider the options of paying for care.

If your relative went into the care home on a temporary or short-term basis, the12-Week Property Disregard only starts from the date of their permanent placement.

Beware: If your relative disposes of their home within this 12-Week Property Disregard period, any protection ceases to take immediate effect. That means, any proceeds of sale will be considered as fair game and included for means-testing by the Local Authority at the point of receipt.

The DPA then kicks in 12 weeks after your relative has been in a care home.

Are you eligible for a DPA?

To be eligible for the DPA scheme, there are several criteria that have to be met:

  • Your relative’s savings and capital must be less than £23,250 (currently the upper limit)
  • They have no other funds available with which to pay for care
  • They should be a homeowner (or be able to offer another asset that can be used as security instead)
  • There should be no one else living in the property who needs to stay there, for example, a spouse, partner, dependent child under age 16, relative aged over 60, or a young relative who is incapacitated
  • DPAs are only available for long-term stays (short term or temporary stays in care are not covered)

However, the Local Authority do have some discretion to offer a DPA to those who do not necessarily meet these criteria.

Ending the DPA

The DPA can come to an end in the following circumstances:

  1. Repaying the full amount due either during your relative’s lifetime; or
  2. When the property (or other form of security) is sold and the Local Authority is repaid; or
  3. When the agreement ends naturally upon their death and the amount is repaid to the Local Authority from their estate. When the home is sold on death, your relative’s executors (appointed under their Will) will be responsible for repaying the Local Authority the amount due under the DPA (plus any interest accrued, administrative and legal costs etc.), either, on the date the property is sold, or 90 days after death, whichever is the sooner. This timescale can be extended at the discretion of the Local Authority.

The Local Authority can take legal action after 90 days post-death to recover all monies due to them under the DPA. So, if you foresee any difficulties in complying with the agreement or making repayment, it is advisable to address them with the Local Authority as soon as possible, as late repayment can result in additional interest accruing, administrative and legal costs, until the debt is settled.

Some advantages of a DPA

There are, of course, some obvious advantages of entering into a DPA with the Local Authority:

  • A DPA gives your relative (or their representative) the choice as to whether they want to sell their home and how they want to pay for their care
  • Primarily, your relative doesn’t have to part with cash immediately, or liquidate investment policies, bank accounts and savings
  • It can help buy time and delay the need to sell your relative’s home
  • It gives a period of respite whilst your relative transitions into their new surroundings
  • It gives peace of mind and flexibility, so that you can choose when to repay the debt to the Local Authority
  • The debt is deferred (hence ‘Deferred Payment Agreement’) and pushed down the line to give some breathing space and sort out finances
  • It usually only attaches to the home. So, if its value increases, then your relative will be left with a greater surplus from the eventual sale proceeds
  • You can still rent the property and continue to claim certain benefits eg Attendance Allowance, Disability Living Allowance (care component), and Personal Independence Payment (daily living component)

Disadvantages of a DPA

There are several, but the main downside is that you will still have to keep up the maintenance and insurance on your relative’s home and pay any existing mortgages.

If the value drops by the time you come to sell the property, there will be less equity left after you’ve paid back the Local Authority’s loan, and worse, there could be a shortfall.

You are incurring interest and other administrative and legal charges over the length of the loan, and tying up funds that perhaps could have been used for other purposes.

The DPA is a legal binding agreement, so read it carefully to ensure you can comply with its terms and any default penalty clauses.

Summary

Be sure to explore what’s right and what’s not before you start to use assets or savings to pay for care. There are other options available so, don’t be forced into selling your home unnecessarily to pay for care.

For additional reading around the subject, take a look at these blogs and find many more on our website:

Read this if your relative is about to be discharged into a care or nursing home

Placing a relative into care…

Will you be self-funding?

BBC Drama “Care”, “Shines A Spotlight On NHS Continuing Healthcare”.

Is your relative claiming their full entitlement to benefits?

How To Get The NHS To Pay For Care is an easy-to-follow, practical e-book that helps you cut through the confusion and claim what you’re entitled to.

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Part 1. But Pamela Coughlan Is Not Really Eligible For CHC, Is She…?

This three-part series will examine the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC funding. In today’s blog, we address some common misconceptions about the findings of the Court of Appeal in 1999 and consider Ms. Coughlan’s daily care requirements using the 2018 Decision Support Tool.  Don’t forget to look out for Part 2, “Needs of a Wholly Different Category”, in the coming weeks!

Most people who dip their toe into the choppy waters of NHS Continuing Healthcare Funding (CHC) will encounter Pamela Coughlan. The findings of the Court of Appeal in her landmark 1999 case against North & East Devon Health Authority helped clarify the legislation underpinning the division between health and social care in England and Wales. This distinction, and the need for nationally defined criteria, led to the drafting of the National Framework for NHS Continuing Healthcare Funding (CHC) and NHS-funded Nursing Care (FNC), and the development of the CHC Checklist and Decision Support Tool as a means of determining individual eligibility for NHS-funded community care.

You can read the full text of the Court of Appeal’s findings here.

Pamela Coughlan was seriously injured in a road traffic accident in 1971.  She sustained a complete C5/6 spinal cord injury; in layman’s terms, her spinal column was severed at the neck.  As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.

Watch an interview with Pamela Coughlan here.

The Court of Appeal judgment centred on the Health Service’s decision to close the NHS facility where Ms. Coughlan resided, its alleged failure to provide a previously assured “home for life” for Ms. Coughlan, and its attempt to shift the burden of responsibility for her care onto the Local Authority.  As social care is means-tested, this would have forced Ms. Coughlan to assume the cost of all her health and social care needs, which had previously been fully funded by the NHS. The Coughlan judgment was, therefore, fundamental in clarifying the legal division between health and social care in England and Wales and remains so to this day.

Read our blogs below for more information about the difference between healthcare and social care needs:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

The importance of the Court of Appeal’s judgement where we are concerned is that it categorised Ms. Coughlan as requiring “services of a wholly different category” than those provided by the Local Authority.  This one sentence, easily missed on a quick read through, continues to underpin the eligibility criteria for CHC funding all these years later.  Indeed, the National Framework draws Commissioners’ attention to “cases that have indicated circumstances in which eligibility for NHS Continuing Healthcare should have been determined, and where such an outcome would be expected if the same facts were considered in an assessment for NHS Continuing Healthcare under the National Framework (e.g. Coughlan)” (National Framework for CHC, 2018, para. 157).

All this being true, and enshrined in legislation no less, why do we encounter so many people – families and experienced CHC and legal professionals alike – who believe Ms. Coughlan is not, in fact, eligible for CHC funding? Not a week goes by without someone – a family member looking for advice, a CCG Nurse Assessor at an MDT – informing us, with great certainty, that Ms. Coughlan would not be found eligible were she assessed using the Decision Support Tool today. Many people believe that the Health Service’s agreement to fund Ms. Coughlan’s long-term care was, in fact, due to it having reneged on the promise to provide her with a home for life, and not her clinical needs. Resources abound on the internet and we hear from many, many people who have considered Ms. Coughlan’s needs, as described by various sources online, and found them to be equal to or lower than their relative’s. On that basis, they conclude, their relative must also be eligible for CHC funding.

For more information about the Coughlan decision and its relevance today, read our blog:

How relevant is the Coughlan Decision Today?

Sadly, the vast majority of those people will be disappointed and perplexed when their relative is found not eligible for CHC funding by the local Clinical Commissioning Group. They will be even more dismayed when this decision is upheld by an Independent Review Panel at NHS England and may even come to suspect foul-play.  On the basis of their understanding of Ms. Coughlan’s needs, the decision makes no sense.

So, why is there such misunderstanding about Ms. Coughlan’s needs and how they relate to the current eligibility criteria for CHC funding?  We feel it is important to answer this question and help families determine whether their relative’s needs are comparable to, or in excess of, Ms. Coughlan’s.  A significant amount of confusion arises, we believe, as a result of a lack of knowledge of Ms. Coughlan’s actual needs, which are unique and specific to a C5/6 complete spinal cord injury (cervical spine), a misunderstanding of the skill required to meet those needs on a daily basis, an overemphasis on the assessed levels of need in the Decision Support Tool and a misapprehension about the eligibility criteria for CHC funding generally.

IMPORTANT – As the Coughlan Judgment predates the National Framework for CHC funding, there is NO available Decision Support Tool for Ms. Coughlan.  The rationale for funding is, therefore, somewhat unclear, save for the Court of Appeal’s statement that she required services of a “wholly different category” to those provided by Social Services. However, Ms. Coughlan has helpfully described her daily care requirements on many occasions over the years and we can reasonably estimate her level of need in each of the twelve care domains using this information.

The following table sets out a summary of Ms. Coughlan’s needs, as described by the Spinal Injury Association, in its 2015 factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare. In each case, we suggest what the correct level of need would be, using the 2018 Decision Support Tool.

DOMAIN DESCRIBED NEEDS SUGGESTED LEVEL OF NEED & RATIONALE
Breathing Wears a corset during the daytime to keep her chest upright without which she would have had breathing difficulties (shortness of breath as breathing is diaphragmatic only). There were no night care issues regarding her breathing. She was susceptible to chest infections (as paralysis of respiratory muscles prevents coughing to clear pulmonary secretions), which were relatively infrequent and not usually severe. LOW

Episodes of breathlessness that readily respond to management and have no impact on daily living activities.
Nutrition Can eat independently using a spoon strapped to her hand provided that the food is cut up for her.

Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup.

 LOW

Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).
Continence She is doubly incontinent. Needing intermittent catheterization, every 3 hours (performed by nursing auxiliaries) as this proves the most effective way of keeping dry. Fluid intake is carefully managed. She wears incontinence pads in case of leakage, but rarely gets wet. (Thus a well-managed need thereby minimizing risk of skin problems.) Able to travel and stay dry when going out and about (visiting friends etc.); she is accompanied only by a driver/handyman & manages her bladder by restricting fluid intake and using incontinence pads. Required insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) of her bowels every second night. HIGH

Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation).
Skin (including tissue viability) Has no skin sensation or perception of skin damage on large areas of her body due to sensory paralysis and has high vulnerability to skin breakdown as is unable to change her position on bed or wheelchair without assistance. She required repositioning approximately 8 times per day to maintain skin integrity. Able to tolerate up to 12 hours sitting in wheelchair so long as pressure-relief is afforded. Uses silicon-foam cushion in wheelchair, but tolerates standard mattress as is turned (side-to-side) 3-times at night (at 0200, 0600 and 0900h). Returning to bed for intermittent catheterization every 3 hours (typically for a 10 min duration) affords pressure relief. Despite pressure-relief strategies, she has had pressure ulcers on her bottom, which although healed have high vulnerability to skin breakdown. Only once did pressure ulcer become infected, necessitating an extended period of bed rest. MODERATE

Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.
Mobility Paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso.

No triceps function in her arms.

Requires hoisting (by 2 people) for all transfers and to be turned when in bed; However, once transferred into a wheelchair she has a reasonable amount of independence as she has retains some (very limited) use of her hands with which she can manoeuvre her electric wheelchair.

 HIGH

Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.

OR

Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.

 
Communication She retains some (very limited) use of her hands with which she can write (with a pen strapped to her hand). She remains completely mentally aware, can access the Internet, converse freely and represent her views articulately. NO NEEDS

Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.

 
Psychological & Emotional Needs No evidence of psychological or emotional needs that impacted on her health and well-being. NO NEEDS

Psychological and emotional needs are not having an impact on their health and well-being.

 
Cognition No cognitive impairment that had a significant effect on awareness of risk and delivery of care. She remained completely mentally aware. NO NEEDS

No evidence of impairment, confusion or disorientation.
Behaviour No behaviour that could be described as challenging. NO NEEDS

No evidence of ‘challenging’ behaviour
Drug Therapies & Medications All medication is routinely prescribed and administered by mouth; Senokot, Calcium, Iron.

Once her condition (tetraplegia) stabilised she did not require an allocated consultant nor require any interventions from ‘specialist’ healthcare professionals.

Requires insertion of docusate suppositories for bowel management every second day.

She has constant neurogenic root pain in her left foot which does not respond to and is not amenable to control by analgesics.

Does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week helps with maintaining appropriate organ positions and strengthening her bones.

 HIGH

Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage.

 
Altered States of Consciousness A medium risk of fainting if air flow was inhibited (managed by wearing a ‘corset’ – abdominal binder). LOW

History of ASC but it is effectively managed and there is a low risk of harm.
Other Significant Needs Autonomic Dysreflexia (AD) (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Autonomic dysreflexia first manifested ~20 years post-injury. Episodes of AD were very unpredictable – sometimes once per month, at other times several times in a week. There were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion this management prevented the need for vasodilators (nifedipine).

Poikilothermia: Because of her injury she was unable to maintain her core body temperature, which was unstable and variable, and consequentially, because of excessive perspiration, she required changes of clothes and the corset up to three times a day. Pamela was able to tell when she was too hot or too cold and therefore proactive monitoring was not required regarding this aspect of her care.

 SEVERE

Critical risks arising from AD, which is constant, life-threatening and unpredictable.

AD attack is caused by noxious stimuli below the level of injury.  Expert management of continence, skin integrity and mobility is essential.

Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention.

An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Click Here to View the 2018 Decision Support Tool

Click here to view the S.I.A.’s factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare’

Summary of Needs:

Now we have assessed Ms. Coughlan’s level of need in each of the twelve care domains, let’s add them to the matrix in the 2018 Decision Support Tool. 

Care Domain P S H M L N
Breathing

 

 X
Nutrition- Food and Drink

 

 X
Continence

 

 X
Skin (including tissue viability)

 

 X
Mobility

 

 X
Communication

 

 X
Psychological and Emotional Needs

 

 X
Cognition

 

 X
Behaviour

 

 X
Drug Therapies and Medication

 

 X
Altered States of Consciousness

 

 X
Other significant care needs

 

 X
Totals

 

   1 3 1 3 4

On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs, three HIGH levels of need in Continence, Mobility and Drug Therapies, one MODERATE level of need in Skin, three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness, and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.

Looking solely at the assessed levels of need, it is completely understandable why people believe their relative must also be eligible for CHC funding. Many, many sufferers of Dementia, Alzheimer’s disease, Strokes and other cognitive disorders will be assessed as having a SEVERE level of need in Cognition, a HIGH level of need in Mobility, Communication and Behaviour, or Nutrition, Medication or Skin, along with a number of MODERATE and LOW levels of need in other domains. But despite their assessed levels of need being equal to, or even greater than, those of Pamela Coughlan, they will not be found eligible for CHC funding.

Why? Because, except in the case of one PRIORITY level of need or two SEVERE levels of need, eligibility for CHC funding is not determined by the assessed levels of need, but by the application of the “primary health needs test”, also known as the four Key Characteristics of Nature, Intensity, Complexity and Unpredictability.

Read our series of blogs for more information about the four Key Indicators

PART 1- Looking At The 4 Key Indicators: Unlocking the basics,

PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence

PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw

PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

Before we can assess Ms. Coughlan’s eligibility for CHC funding, we need to consider the nature, intensity, complexity and unpredictability of her needs, based on the information we have gathered in the twelve care domains. And that’s exactly what we’ll do in part two of this series, Needs of a Wholly Different Category, coming soon!

 

Don’t miss out! Subscribe to our blog about care fees and NHS Continuing Healthcare and be the first to read them as they are released…

 

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Can CCGs Use Annual Reviews to Ration Care Funding?

We know that certain parts of the country are more likely to award NHS Continuing Healthcare (CHC) than others. This is often referred to as the ‘postcode’ lottery. Where you live can increase or decrease your chances of receiving CHC Funding from the NHS.

CHC Funding is assessed and paid for by the NHS, via its local Clinical Commissioning Groups (CCGs). CHC Funding is free of charge and is not-means tested. If you are 18 years or older, have had an accident, disability or illness, CHC will pay for your all your long-term assessed healthcare and social care needs as well as your accommodation – providing, of course, that you meet the eligibility criteria. Those criteria and guidance are set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

Don’t make the mistake of confusing healthcare needs and social care needs! Social care needs are paid for by the local authority and are subject to means-testing, whereas healthcare needs are paid in full by the NHS, are not means-tested, and are free at the ‘point of delivery’ (ie need). Specifically, the National Framework, states:

35. Where individuals receive care, treatment or support from the NHS this is normally under the provisions of the National Health Service Act 2006, referred to from this point onwards as the NHS Act. This support is provided free at the point of delivery to the individual.

180. NHS care is free at the point of delivery. The funding provided by CCGs in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan.

For more information read: Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs.

Families ask us…Why?

Why is the bar to obtaining CHC Funding set very high and why is the whole application process so tortuous, subjective and complex?

Why do so many families struggle to get this vital long-term CHC Funding for their relative in need of care? And more critically, once they have it, how do they keep it?

Why do we hear so many stories of funding being withdrawn following a review – causing untold anxiety, anger and frustration?

The most likely answer is perhaps due to a combination of:

a) budgetary constraints and money ie rationing care and/or;

b) incompetent or inadequately trained assessors, and;

c) being able to recruit highly proficient quality assessors due to a high staff turnover.

If correct, it is hardly surprising that so many individuals who are absolutely entitled to CHC Funding are being failed by the system and the application of the National Framework guidance which is designed to protect them.

No wonder there is an obvious anomaly, that despite an ageing population, so few people by comparison qualify for CHC funding. Read our blog: “Care crisis fear as over 85s to double by 2043”.

The NHS are under pressure to save £855m by 2021. Although paragraphs 37 and 41 of the National Framework categorically state that ‘financial gatekeeping’ should never be a factor when determining eligibility for CHC Funding – in the absence of other explanations, it is hard to find a plausible reason why so many individuals are not awarded CHC funding, or those that are, can have it wrongly withdrawn without robust justification. The National Framework states:

37.3. CCG decision-making processes should not have the function of:

  • financial gatekeeping

41.2. CCGs do not have to use a panel arrangement as part of their process for ratifying eligibility recommendations, but if they do the panel should not be used for financial gatekeeping.

Contrary to the guidance, it appears that some CCGs are more aggressive in seeking to withdraw existing CHC funding than others. But again, perhaps that could be a symptom of the ‘postcode lottery’ rather than any calculated policy on protecting funds.

Yet, when an individual is perfectly entitled to receive CHC funding (and has been receiving it for many years to help with their long-term care needs), it is hard to understand how it can possibly be withdrawn – especially, if due to the nature of their illness or injury, there is no possibility of a reduction in the level of need over time, or their needs have remained constant since the last assessment, if not increased!

Annual Reviews – an opportunity to withdraw funding:

Paragraph 181 of the National Framework provides that CCGs are obliged to carry out reviews of CHC funded care packages, initially after 3 months from when the eligibility decision is made, and then every 12 months thereafter. According to the National Framework:

183. These reviews should primarily focus on whether the care plan or arrangements remain appropriate to meet the individual’s needs. It is expected that in the majority of cases there will be no need to reassess for eligibility.

142. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.

In short, the 3 month or annual review is a safety mechanism to ensure that the individual’s needs are still being met by the care package in place. If their needs remain as before, then the care should continue unabated. However, if they have increased, the CHC care package should also be enhanced to meet those higher demands. However, unless there has been a substantial reduction in the individual’s needs, there should be no need to reconsider their eligibility for CHC funding at the annual review: review and reassessment are separate entities and one does not naturally follow the other in every case.  Of course, where the need has been permanently removed and no longer exists, then the CHC Funding should be withdrawn upon reassessment.

However, what is clear is that CCGs should not try to use the 3 month or annual review as an opportunity to remove an individual’s CHC Funding when, in fact, their eligibility should never have been in question.  This is entirely in contravention of the National Framework and there is no justification for it. What is more galling for families, is when their relative has obvious ongoing continuing care needs – which have not significantly changed – but face the daunting prospect of them being referred to a reassessment and funding being withdrawn.

It is no wonder that families going through the application or review process become so stressed. The fear of vital funding being withdrawn could throw their relative into the open arms of the local authority and subject them to a means-tested assessment for social care funding. If they don’t meet the local authority assessment criteria, they will then have to pay for their own care out of private funds and savings. Families will then be forced to appeal and join the back of the queue, and potentially face years of delay whilst having to finance their relative’s care.

Unjustified reassessment:

Here are some examples where it would be unjustified for a CCG to conduct a reassessment of CHC eligibility following an annual review, eg where there has been:

  • Failure to review the care arrangements;
  • Failure to conduct annual reviews;
  • Conflated annual review combined with reassessment where there is no justification to do so;
  • Failure to identify any significant change in needs to justify full reassessment;
  • Failure to make any comparison with the most recently completed Decision Support Tool (DST);
  • Failure to apply the ‘well-managed need’ principle;
  • Failure to accurately summarise the patient’s needs;
  • Too much reliance on written records, over verbal staff testimony, despite being aware that the care home records were not reflective of needs;
  • Minimising and marginalising the patient’s needs;
  • Improperly analysing the four Key Indicators (Characteristics);
  • Failure to ensure consistency of assessment;
  • Failure to provide adequate procedural and clinical training for its staff;
  • Failure to take the family’s or patient’s view of needs into account;
  • Failure to recognise/correct clinical failings in its assessment when informed by the staff/family;
  • Expressing the view that it doesn’t matter if CHC is withdrawn because the individual will be funded by the local authority anyway!

Justified reassessment:

There are various ways a CCG can go about the annual review, but here’s an example where it would be justified to conduct a reassessment of CHC eligibility following an annual review:

Scenario: The CCG’s Nurse Assessor visits Mr A to conduct a review of his care package. The DST or CHC review template is completed and, when compared with the DST from the previous review/assessment, Mr A’s needs are evidenced to have reduced in a number of key domains.  For example: Mr A, who was assessed as meeting the CHC criteria on the basis of the complexity and intensity of his behaviour, has subsequently fractured his hip and is now bedbound; his dementia has advanced and he no longer resists necessary care or presents as distressed; all psychotropic medications have been withdrawn with no negative effect on his behaviour, psychological state or presentation; Mr A has been discharged by the Community Mental Health Team and is no longer under the care of the Community Psychiatric Nurse.

In this scenario, the CCG would be justified in proceeding to a full reassessment of CHC eligibility. The Nurse Assessor should make a recommendation to the CCG that Mr A’s needs have changed and a full MDT, with a local authority representative, should be convened to reconsider CHC eligibility.

Remember, if your relative’s CHC funding is withdrawn, they are most likely to be passed over from the NHS to their local authority and with it, the financial burden. Your relative with then be subjected to a local authority means-tested assessment, and if they have assets or capital (including a home) valued in excess of £23,250, they will end up self-funding and having to pay for their own care privately.

We applaud Admiral Philip Mathias’ pioneering public campaign to bring the NHS to task and create a fairer and more transparent process. For more information watch his recent TV interview with Victoria Derbyshire https://www.youtube.com/watch?v=Fc3fsSEnEBo and visit his website here: www.nhschcscandal.co.uk

Here are some other useful blogs for additional reading around the subject:

Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’

Is your relative waiting for a review of their CHC care package?

Should you pay care fees if your NHS Continuing Healthcare Funding is refused or withdrawn?

Over the years, we have been contacted by many families facing the worry and anxiety of an annual review, especially as they are already aware that critical CHC Funding for their relative could be referred for reassessment and possibly withdrawn. If you need specialist advocacy help visit our 1-2-1 Support page.

If you feel your relative has been the victim of a poor or biased review and has then had CHC Funding unfairly or wrongly withdrawn, share your details below and let others know how you went about getting it reinstated, whether you were successful, and how long it took…

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Where is your retrospective CHC claim up to? If you’re frustrated by delays, read on…

You can make a retrospective claim to recover care fees that were incorrectly charged if your relative meets the eligibility criteria for NHS Continuing Healthcare Funding (CHC) as set out in the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care (2018).

Background history

To draw a line under its pipeline of retrospective review cases and manage the scale of the issue, the Department of Health introduced an arbitrary deadline to register any retrospective claim for wrongly paid care fees (paid between 01/04/2004 – 31/03/2011) by 30th September 2012. This was shortly followed by a second deadline of 31st March 2013 to register any retrospective claim for funding between 01/04/2011 to 31/03/12. If you missed the deadline, you can now only retrospectively claim for care fees going back to 1st April 2012.

However, the NHS could not have anticipated that it would be inundated with nearly 60,000 new retrospective claims for NHS Continuing Healthcare Funding as a result of their own instigation to get a grip on the number of current and prospective pending retrospective claims.

The result was to create administrative chaos, more red tape and bureaucracy, and a plethora of wrong decisions as to eligibility for CHC. Whether this was due to maladministration or sheer incompetence of those assessors appointed to carry out reviews or CCG Local Resolution Panel appeals, or perhaps some deliberate financial gatekeeping policy to turn down claims, remains open to debate. But, the lack of successful claimants magnified the administrative headache for CCGs as many appeals were kicked down the road and left to languish in the ether.

Whilst the underlying principle of our much-admired NHS is that “NHS care is free at the point of delivery” in practice, accessing CHC funding quickly, just when you need it, can be an entirely different proposition! Readers comment that the CHC review and appeal’s process is full of ‘minefields’, ‘hurdles’, ‘complexities’ and is ‘overwhelming’, ‘daunting’, ‘stressful’ and ‘challenging’.

The backlog created by the deadlines for registering retrospective claims backfired and clogged up the retrospective review pipeline for many years to follow. Perhaps this was a desired outcome? Regardless, most CCGs, without exception, demonstrably failed to absorb the huge influx of retrospective cases efficiently and allocate adequate resources to cope. The backlash has been felt ever since, and indeed, some cases registered in 2012/13 still have not been finalised and remain under appeal!

Whilst apologising for the delays, the best most CCGs could do in the early years was to issue holding updates when chased, advising that your case was (say no. ‘56’) in the queue – with no commitment or timescale as to when it would be looked at. And, just when you thought your it was moving to the top of the list for review, the case could then be reallocated to a Commissioning Support Unit (CSU) and get downgraded again. Most CSUs were notoriously hard to communicate with (not to mention administratively incompetent) and inevitably you would be fobbed by someone who had no idea what was going on (assuming that they could actually trace your papers!). All these delays and bureaucratic hurdles left families and their representatives feeling angry and frustrated.

Some might say this was all part of a brilliant strategy by CCGs to ration payments by delaying progress of cases – and hence, ultimately payment – in the hope that claimants would just give up and abandon their retrospective claim. After all, in many cases, it was money their deceased relative had paid, not them, and to recover anything was a ‘bonus’. However, for most, it was a point of absolute and resolute principle. Their spouse, relative, friend or those for whom they had a professional duty to protect, saw this as their moral duty and obligation to pursue recovery of care fees that had wrongly been charged by care homes. These fees should have been paid for in full by the NHS (ie free of charge), had they undertaken a correct assessment for CHC funding diligently, fairly and robustly. Instead, some of the most vulnerable in our society have been forced to use hard-earned life savings set aside for a rainy day in their old age or sell their assets or home to pay for their care, quite needlessly.

So, no matter how long the delays or what obstacles are thrown in the way to slow down or delay retrospective claims, nor whatever farcical bureaucratic red tape and maladministration families have had to endure, for most, this was and still is, a matter of principle and CCGs must be held to account.

You only have to read what our contributors to the Care To Be Different website and our Facebook page say about their personal experiences when battling for their relative’s rights for CHC funding, to get an immediate sense of the delays, anxiety, worry, and frustration caused at the hands of the CCGs – sometimes referred to as ‘judge, jury and executioner!’

Admiral Philip Mathias, who undertook his own retrospective claim and successfully recovered £200,000 for care fees on behalf of his late mother said that the “CCG did everything possible to avoid making an eligibility decision. This included ignoring and grossly distorting the evidence contained in her care records.” You can read more from Admiral Mathias in our blog: Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’.

CCGs can, of course, take their time processing retrospective reviews and appeals, as there is no set timescale to adhere to. They’ll work at their own pace, probably in chronological order, with the oldest cases being dealt with first. Nor is there any proverbial ‘stick’ to beat them with in the event of delay. Your only option is to be patient or else keep chasing for progress or lodge a formal complaint, for what it’s worth. Conversely, in return, little leeway is often afforded to families who can be made to jump through arbitrary hoops to meet unrealistic and unreasonable CCG deadlines.

Families who successfully reclaim care fees that were wrongly charged are, of course, entitled as of right to receive additional interest on their restitution award as a consequence of the CCG’s ‘maladministration’ (ie delays or unsound decisions). Since 1st April 2015, the revised Redress Guidance provides CCGs should pay interest at RPI rates – which are relatively low. CCGs might see the trade-off between delaying cases and holding on to their NHS budgets as a price worth paying if they have to pay out some interest if they lose at appeal.

What’s happened since?

We are hoping that these historic practices will be eroded by the new Government Guidelines which came into effect from 1st September 2020.

CCGs have been mandated by the Government to progress assessments and appeals with all speed. That said, it is up to each CCG how to manage and progress its own caseload. Some are likely to cut corners in an effort to try and catch up. It is too early to tell whether that is a good or bad thing, but speed should not be a substitute for poor decision-making that will only add to the pile of pending appeals. But for others, we fear delay may be part of the fabric and has become ‘institutionalised’ after many years of practice since 2012.  For more information, read our blog: Are you ready for 1st September 2020? CHC Funding Gets Back to Business

Here’s what you can do…

Whether you are waiting for a Multi-Disciplinary Team Meeting or Local Resolution Appeal or the outcome decisions from these panels to be notified to you, here are some quick tips to help you counter delays:

  1. Be persistent. Try and establish a point of contact with whom you can liaise regularly at the CCG. Sounds obvious, but not so easy in practice!
  2. Set diary reminders and don’t be afraid of chasing the CCG or CSU regularly for updates.
  3. Don’t be fobbed off, and press for progress.
  4. Keep emailing or calling until you are satisfied that your claim is receiving the CCG’s attention.
  5. Remember to get hold of and keep safe your proof of payment. If you win your appeal, you will need to satisfy the CCG as to the amount of care fees to be reimbursed. Keep safe all bank statements, invoices, statements of account from the care home and any correspondence relating to fees. If you don’t have them, do your best to get copies as quickly as you can.
  6. If waiting for an appeal date, prepare your written arguments in advance. Early preparation is essential. Too many people leave the matter to the last minute. Get hold of all relevant notes and records from your relative’s GP, hospital, and care home notes so you can draft your retrospective appeal. This process can take weeks, especially in the current COVID climate, where administration might be much slower (regardless of GDPR allowing them one calendar month to comply). Our website features lots of helpful information here.  Search for terms surrounding the ‘4 Key Indicators’).
  7. Check whether you have legal authority to act for your relative, friend or client. Do you have a valid Lasting Power of Attorney or Deputyship Order (for living patients) or a Grant of Probate (deceased patients)? Correct authority will be required by the CCG before they will process your restitution award.
  8. Don’t be afraid to raise a formal complaint to the CCG if you’re getting nowhere. You should be able to find their details online.
  9. Even though the interest payable by the CCG may not be significant compared to the overall amount of reimbursement due, this is still costing the CCG money. You can remind them that delay is a waste of resources which could be put to better use.
  10. Read our book, How To Get The NHS To Pay For Care.
  11. Above all, when communicating with the CCG, remember to be polite – however frustrated you may feel. The NHS staff deserve respect. In our experience, you will get better results with a courteous approach.
  12. Remember that you don’t have to fight this battle alone. There is professional help and advocacy support available if you need it. We only recommend that you don’t leave it to the last minute or you might miss out.

We’ve added a selection of blogs around the subject to get you started, but there are dozens more on our website. Browse our Articles page or use the search box to find what you’re looking for.

Confused? Read This Before You Start Your Retrospective Appeal for CHC Funding…

Perseverance and stubbornness pays off, so don’t give up!

Don’t Give Up When Faced With Ongoing Delays

Frustrated with CCG delays? Here’s how to complain

Essential: Have You Got A Power Of Attorney?

Retrospective Reviews for past periods of care – avoiding fatal mistakes

Relief as 6 Month Time Limit To Appeal MDT Decision Is Reinstated

Know your rights – Appealing the CCG’s refusal to grant CHC funding

Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision

An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day.

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Sick pensioners threaten to sue Health Secretary Matt Hancock and the NHS for £5BILLION

If you missed this article in last week’s Daily Express (26th October), you can read it in full below:

Sick pensioners threaten to sue Health Secretary Matt Hancock and the NHS for £5BILLION

“Legal documents have been sent to Health Secretary Matt Hancock and the NHS giving them 14 days to give very sick pensioners the free healthcare they have a right to or face a £5bn lawsuit. The move is the first in a campaign fighting to overturn the unfairness which sees elderly people bankrupted to pay for NHS care – which they have paid for via their taxes all their lives.

The notices – known as a Judicial Review pre-action protocol pre-claim letter – were sent to Mr Hancock and the NHS by Rear Admiral Philip Mathias, who is leading the fight after winning back £200,000 wrongly charged by the NHS for the care of his late mother. The Department of Health and Social Care and the NHS now have two weeks to promise a new fairer plan or the Judicial Review in the High Court will go ahead.

And if successful, the action could cost the health service £5bn in paid-back medical fees.

The lawfulness of the Continuing Healthcare National Framework is being challenged as the scandal of NHS Continuing Healthcare (CHC) rationing grows.

Tens of thousands of eligible pensioners – and other sick and disabled adults – are being rejected by their local Clinical Commissioning Groups for healthcare costs despite suffering from awful health problems.

Many of these people are suffering from dementia or Alzheimers and the vast majority of them are homeowners – so they can be forced to sell their properties to pay the bills.

Former submariner Admiral Mathias, who was in charge of Britain’s nuclear policy at the Ministry of Defence before his retirement, said: “In terms of the sheer scale of this scandal, measured by the significant number of old, ill and vulnerable people adversely affected and the huge level of unlawful financial deprivation, this is very possibly one of the biggest government scandals of modern times.

“The aim of this legal action is to force the Government and NHS England to stop Clinical Commissioning Groups breaking the law and to make sure redress is provided to those who have been unlawfully denied CHC funding.”

On his Crowd Justice page, Admiral Mathias highlights the plight of an elderly patient plagued with health conditions who was denied CHC funding.

The severely ill man suffered from Parkinson’s disease, ulcerative colitis, double incontinence, chronic kidney disease and was unable to move or feed himself.

But his healthcare needs were deemed insufficient to qualify for CHC payments.

The day after that decision was confirmed at an appeal, he died weighing 45kg.

Caroline Abrahams, the charity director at Age UK said: “It’s very sad that things that have reached the point at which administration of the Continuing Health Care scheme is being legally challenged.

“But at Age UK we too have heard too many stories of older people seemingly denied their rights and they and their families having to battle for months or even years to obtain redress.”

“Continuing Health Care exists to help older people with the most serious needs and that’s why it is especially important that it is properly resourced and operates in a transparent and fair way.

“We really do hope that this legal action leads to improvements, so that older people living with complex health problems can be confident of getting the support they desperately need, and so they and their loved ones are not faced with sky high care bills that legally ought to be being met by the NHS.”

Under national CHC rules, elderly people with significant health problems should have their care and nursing fees paid in full by the NHS, provided their condition is the main reason they need help.

This is different to the means-tested adult social care funded by councils.

But the process is complicated, bureaucratic and local clinical commissioning groups (CCG) have been accused of “rationing” successful applications so they do not have to pay out.

There is a 20-fold variation in the chances of securing CHC funding between different NHS clinical commissioning groups, recent research found.

The Daily Express has led a crusade against the refusal to fund the costs which leave elderly people with “catastrophic” bills.

The first £30,000 needed for the court action was raised in a matter of days.

Campaigners are now raising £250,000 for the rest of the legal fees.

The total was boosted earlier this month by a £1,000 anonymous donation from a supporter who wrote; ‘shame on the liars and cheats, who tried to swindle an old man, so ill, he could do NOTHING for himself….. The system, and more so the supposed “caring professionals ” concerned, are corrupt to the core….

Dan Harbour, the managing director of the independent advice group Beacon CHC, said: “The public support for Philip Mathias’ campaign reflects the strong feelings about the CHC system that we encounter every day from clients who turn to us for help.

“Rear Admiral Mathias is passionate about this issue, and I have no doubt he’ll be an effective representative for those who’ve already donated to support the legal challenge.”

To get NHS CHC, you must have “a complex medical condition with substantial, ongoing care needs”, and you have to be assessed as needing it.

In England & Wales, this assessment is carried out by the local CCG.

But worried families complain that the criteria is too strict and often changed.

They say obviously very sick people – especially if they are homeowners – are rejected by a NHS they have paid into all their lives.

The papers – drawn up by top law firm Hopkin Murray Beskine and delivered to the Government’s legal department in Westminster – say the evidence is overwhelming that consistent and lawful CHC funding decisions are not being made.

They describe the postcode lottery of positive eligibility decisions as “startling”.

And despite a growing older population, since 2015 there has also been a sharp decline in the number of people qualifying for the payments.

This “defies any logical explanation save for a desire to save money which cannot be a lawful reason to deny a person the free NHS care to which they are entitled”, the papers say.

The Department of Health and Social Care would not comment on the legal action.

COMMENT By Andrew Farley

There is almost a complete lack of awareness of the existence of CHC and for those who have heard about it an inability to navigate the complexities of the process alone.

Clinical Commissioning Groups at local hospitals are often very inconsistent in their interpretation of the CHC regulations.

This leads to an unacceptable level of subjectivity in the way in which the National Framework is applied and often there is a complete disregard for the law.

There is also considerable evidence of a “postcode lottery” where the eligibility criteria is applied more harshly in some areas than others.

The fact that the NHS are judge, jury and gatekeeper is blatantly wrong – a lot more independence is required.

In any other legal situation, this would be considered to be a clear conflict of interest.

We know that many thousands of people have been inappropriately denied NHS CHC Funding.

The Government has provided significant support to those who have been discharged from hospital requiring ongoing care during the current pandemic.

But there are now 25,000 people who all need to be assessed for care funding and the delays and process issues which are already endemic in the system will be further compounded by the situation.

Many reviews have been found to be inadequate due to a failure by the Assessors to consider available evidence either properly at all.

There are a significant number of appeals presented to NHS England each year resulting in long delays to have cases reviewed by an Independent Review Panel, the success rate at which is very low.

The Health Service Ombudsman also seems to have very limited scope in relation to complaints about CHC funding.

As long as the CCG has followed the correct process, there is a reluctance to uphold a complaint even when the clinical decision is deeply flawed.

And the Ombudsman’s Clinical Advisors are generally individuals employed by the NHS Continuing Healthcare teams, being the very organisations against whom complaints are being made.

The NHS has been told that it has to make £855m worth of efficiency savings in relation to CHC by 2021.

The only way of achieving this is to reduce people’s packages of care and/or to withdraw funding from those who continue to be entitled to it.

This is further compounded by arbitrary caps on care fees which are imposed by various CCGs.

This requires families to top up the shortfall between what is funded and what is being charged by the care provider and is illegal.

Many of the families we speak to have relatives who have been funded for several years, but are now being reassessed and funding is withdrawn.

This is despite the fact that they continue to deteriorate and there has been no improvement in their condition, or reduction in the care required.

Families understandably struggle to rationalise the justification for this which in many cases is blatantly wrong.

The whole CHC system is unlawful and not fit for purpose.

• Andrew Farley is a lawyer and the founder of Continuing Healthcare support group Care to be Different

Case study

On the day of her mother’s funeral, Margaret Kemp received a bill for £63,178.20p – this was on top of £110,000 already paid for supposedly free NHS care.

The 95-year-old mother of two, also called Margaret, was a former district nurse but died penniless after working for and paying into the NHS all her life.

Despite suffering from dementia and host of other severe health problems, the Surrey Clinical Commissioning Group did not class her needs as ‘primary’.

This meant her daughters were left with no choice but to sell the home their mum loved to pay the nursing home and healthcare bills.

Miss Kemp, who lives in Osgathorpe, Leicester, said: “It’s criminal, unlawful and immoral the way they treat dementia sufferers and other elderly people whose poor health means they need care and treatment.

“Dementia robs a person of their dignity; the State rapes them of their assets.

“My mum did the right thing all her life. My father was a veteran of the D-Day landings and they were typical of their generation as they lived within their means.

“They never had a credit card, didn’t go on foreign holidays or went to restaurants and always ‘made do and mended’.

“They scrimped and saved and eventually bought their council house which was their pride and joy.

“My dad died in 2013, he had prostate cancer and mum nursed him at home for as long as possible and then he spent his final days in a hospice. All this was covered by the NHS.”

In 2016, aged 92, Mrs Kemp senior fell and broke her hip. She was admitted to hospital but never walked again.

There was also a diagnosis of dementia which was exacerbated by the anaesthetic and it became clear she could not live alone anymore.

“When the care professionals got involved, one of the first questions I was asked was ‘is your mum a homeowner’,” said Miss Kemp.

“My mum could not stand, could not walk, did not know where she was, where her husband was and was distressed and highly anxious.

“Added to this, she could not remember she could not walk so kept trying to stand up and more falls ensued. She needed 24/7 care as she was a danger to herself.

“But every single Continuing Healthcare assessment minimised her problems, every “need” was ignored.

“The CHC Assessors would spend a couple of minutes with her and decide she was mildly confused.

“This was despite being in front of a woman who thought she was on a farm in Ireland, could not recognise her daughters, had to be hoisted everywhere, could not move due to a risk of falls and was on all kinds of medication.

“Her skin was like tissue paper, she weighed seven stone and was covered in bruises.

She was awarded Funded Nursing Care at £717.43 per month, but the Surrey nursing home fees were £5,300.

“Then in March 2019, mum was diagnosed with pneumonia and we were told to expect the worse.

“We were asked whether we wanted her to be transferred to the hospital but we wanted her to pass away peacefully in her nursing home, not in a busy A&E and her doctor agreed.

“I asked for a Fast Track CHC to be initiated on March 2 and asked again on Monday 4.

“On March 5, I bumped into a CHC Assessor at the home. Mum had pneumonia, not eating or drinking, we were at a vigil at her bedside and she weighed 6½ stone.

“A report came back to say she only needed social care.

Apparently the assessor thought she was “responding to antibiotics” which meant she could open her eyes slightly.

“I can’t express my anger and frustration. They hadn’t reached the limit of what her house would give them when it would be sold, and they just disregarded her needs.

“I complained and they did another Decisional Support Tool a few months later, she qualified but when the report went to Surrey Clinical Commissioning Group her scores were lowered and there was to be no other help.”

If you are in the process of seeking NHS Continuing Healthcare Funding for your relative, you don’t have to fight this battle alone. Read our book for lots of handy tips and help.

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Problems with care home records? Mind your language…

It is quite common for care home records to be in a jumbled and disorganised mess, containing incomplete and inaccurate information with lots of missing critical information. Good record keeping is essential for any resident in a care home or other care facility.

Logically, how can a care home responsibly care for its residents without an accurate description and record of each individual’s daily events and healthcare needs. What did they do in the day? Did they exhibit any challenging or inappropriate behaviours? What medication was administered, when and by whom? What did they eat and how much fluid intake did they have? Are they at risk of weight loss or malnutrition? Were they able to mobilise safely or need carers to assist with transfers? Did they fall? Were they left in bed or sitting too long, putting them at risk of skin damage and pressure sores? How was their continence and toileting managed etc? All these issues and more should form part of a resident’s daily care records.

You put your trust in the care home and believe that they will do their absolute best to look after your relative and keep them safe and well. But, how often are the records incomplete or inaccurate and simply not reflective of the resident’s actual care needs? So much so, that you may wonder if they’re actually talking about your own relative!

Good records are vital to supporting a successful application for CHC Funding.

All these daily records are, of course, not only vital for monitoring the individual’s well-being and for staff handover, but also form a very important part of the NHS Continuing Healthcare assessment process. The care home records should be considered and referred to by the appointed Clinical Commissioning Group’s assessors when conducting their assessment of the individual’s eligibility for NHS Continuing Healthcare Funding (CHC). The same records will also be an essential reference point at any subsequent appeal, whether conducted at a Local Resolution Meeting or by NHS England.

However, care home records will often be completed by staff with a poor grasp of the English language, which might account for some misdescription (or lack of description) of key events and errors in the notes.

Other difficulties arise due to a lack of training as to the quality and level of detail required for good note keeping.

Staff may become case-hardened and used to some challenging behaviours that become the ‘norm’ for that individual, and so may not necessarily think to record them in the care records.

Most commonly, however, the problem is caused by the sheer lack of time, with too few staff having to cope with too many residents.

If a contemporaneous note does get written up, it is quite likely to contain minimal content as staff have to keep moving and there will be other residents in need of their attention. Due to daily pressures of working, it is common for notes to be written up at the end of a shift when staff are tired and anxious to get home, or else by night staff.

Care home staff are there to provide care – they are not administrative record keepers. Missing entries recording key events and episodes are common. Some events might recur frequently during the day e.g. pad changes due to incontinence, but only get recorded as one single event to save time. Other entries can be so meaningless as to be worthless. For example, ‘Dorothy ate a cheese sandwich today’; or lots of repeated daily entries saying, ‘no daily change’. The latter sounds like a tick box exercise or a ‘cut and paste’ job. It is of absolutely no help to anyone and suggests that the author of the note just couldn’t be bothered to write what actually happened, or  thought this will suffice as they’re far too busy – without realising the wider implications.

You need to know far more detail, such as their actual Waterlow score, whether they were incontinent, and if so, how often? Were they resistive to care and product changes? What is their weight so you can monitor any fluctuations? Did they experience any breathing problems etc? Where is the Care Plan? Is it being adhered to? When was it last updated? Do the entries in the care records meet or contradict the Care Plan? Ask yourself, do the daily records reflect this sort of detail, and if not, why not?

We often see records that paint a rosy picture or ’blue sky’ the resident’s needs and write entries in nice ‘fluffy’ language, apparently, so as not to distress the family by describing the real state of their relative’s condition. However, beware! Playing down needs does not assist you and will undoubtedly count against the individual at any pending CHC assessment or appeal.

We hear from families who tell us that the records they have seen are totally inaccurate e.g. referring to their father having a healthy appetite and enjoying a roast pork lunch, when in fact they have lost several kilos and are at nutritional risk, and have such an acute intolerance and aversion to pork that they haven’t eaten it since childhood! It’s as if the records are fabricated, or else the author is thinking of an entirely different person! But, unless spotted and challenged, this type of erroneous entry will be a fixture in the records and could be referred to at a CHC assessment or appeal to your relative’s detriment.

Watch out for the language being used in the records as this can be misleading and distort the gravity of the individual’s health needs. Here are some real examples we’ve encountered:

“…pleasantly confused…” – this was used to describe someone with significant cognitive impairment on account of dementia.

“…eats well and finishes her meals…” – this elderly lady would eat just a few spoonfuls of food at mealtimes and was rapidly losing weight.

“…enjoys watching his favourite TV programmes…” – this gentleman could not engage in any way with people or with his environment; the TV was simply switched on and he was placed in front of it.

“…responds well to reassurance in due course…” – this lady had continual suicidal thoughts on account of her severe paralysis and she was deeply distressed by her situation.

“…speaks clearly and can communicate her needs…” – this person’s speech was impaired and further complicated by mental confusion; assessors attributed her ‘clear speech’ to the fact that her carers were used to her. This is in no way a valid argument in an assessment.

“…inconsistency in bowel action…” – this lady had serious problems on account of her double incontinence combined with other major health problems, which together were causing immense distress. The word ‘inconsistency’ here doesn’t come close to describing the real situation.

“…uses a wheelchair for distance…” – this lady was completely immobile and the only way she could be moved from one place to another was by someone pushing her in a wheelchair.

The cynic would say that it is not generally in a care home’s interest to keep good daily records because that could assist the resident achieve CHC Funding. It is better if needs are played down in an attempt (one would assume) to render the elderly person ineligible for CHC Funding. Otherwise, it can create a cash-flow problem for the care home and leave them substantially out of pocket. For example, let’s assume a care home usually charges £1,500 per week for a standard room, but the NHS agreed CHC bed rate with the care home is only £825 – that leaves a shortfall of £675 per week. Multiply that by 50 – 100 residents in a large care facility and they could be losing between £33,750 to £67,000 a week! That is a big loss to absorb when you have high standards, lots of staff, big overheads and manicured grounds to maintain. No wonder, few care homes are rushing to encourage residents to seek CHC Funding. This scenario was portrayed in the harrowing BBC drama, ‘Care’ featured in a previous blog. You can read more about it here: BBC Drama, “Care”, Shines A Spotlight On NHS Continuing Healthcare

Inadequate records can make the CCG’s task much easier to reject or withdraw existing CHC Funding at an MDT, especially if their assessors are dismissive of the family’s representations to fill in the missing gaps or correct information in the care records.

Also, don’t forget, that the appeal panels will not have seen the resident. All they have are the oral and written submissions presented to them. The CCG’s representatives will point to the lack of entries in the care records as justification for arguing reduced or low needs when opposing CHC Funding. Faced with poor records, the family will have a much tougher job persuading the CCG that their relative’s daily needs are complex, intense and unpredictable. That can be hugely frustrating, but unfortunately, quite common. Although family representatives can give evidence that those needs exist, without independent corroborative evidence in black and white print, it can make the adjudicators’ decision far easier to decline funding. Of course, when reaching an outcome as to eligibility for CHC Funding, there is an element of skill required to read between the lines and think about what level of care would have been required to meet the individual’s needs. But, the job is so much easier if the care records are up-to-date, complete and accurate. Otherwise, if it’s not there in print, then the MDT or appeal panel might conclude that if the care records are silent, it didn’t happen.

Read our blog: PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw

So, be alert! Regularly check the minor detail in the care records carefully and look for any inconsistencies and contradictions. Do the contents accurately match your knowledge of your relative’s daily needs and how they are being cared for? Are they doing the things that the records portray? Be willing to challenge meaningless or inaccurate records, or records which are simply not true, or which seem designed to diminish or underplay their healthcare needs.

Beware of the care home’s reluctance or delay in sharing the records with you. They may have something to hide or reflect the home’s inefficiency in completing them on a daily basis. There may be huge gaps for their staff to complete.

Failure to address the records and keep on top of them could end up adversely affecting not only your relative’s well-being, but also their prospects of getting (or retaining) CHC Funding.

Keep a diary

When you or a family member are visiting a relative, it’s a good idea to keep your own diary or a daily log of events as a contemporaneous aide memoire and evidence of their daily needs, should it ever be required at an assessment or appeal.

Take an elderly and vulnerable resident with poor mobility who is at high risk of falling. Too many falls go unwitnessed and/or unreported, which can be indicative of an inadequate Falls Risk assessment and a general lack of care and supervision (ie neglect). However, it is vital that the care records record each and every falling incident or near miss, as it builds up a picture of need. If an individual has numerous falls within a short space of time, they shouldn’t be ‘swept under the carpet’ as ‘just one of those things’, because it happens frequently, or more worryingly, as a cover-up. You should be notified of each and every fall, and the care records should reflect the incident and not trivialise it. Keep your own records of any new fall, bruise or injury as this evidence may be vital (and be corroborated by records following hospital admission) even if the care home records don’t tell the whole story!

Encourage other family members to write in it if you’re not there. Include things like:

  • How your relative was – think of their pain, mobility (note any falls, new bruises), nutrition (weight loss or gain), cognition, behaviour, skin issues (new sores or patches developing) breathing, communication, medication, continence (accidents) etc.
  • Records dates and times of any relevant medical or healthcare appointments, eg physiotherapy, GP or Consultant visits, and other meetings to do with your relative’s health needs, declining health or general provision of care.
  • Any relevant conversations with staff and therapists (e.g. physiotherapy, occupational therapy, speech and language therapy, nutrition, etc) – and write down what was discussed.
  • Notes on anything that doesn’t seem right to you about the care being administered or errors in the notes and records.

From a family’s point of view this type of detailed information is required to build up a picture of their relative’s overall healthcare needs. Without it, they will face an uphill struggle to convince any Multi-Disciplinary Team or appeal panel to award CHC Funding.

For more reading around the subject, look at these blogs:

“So will you be self-funding?”

Ongoing conflicts of interest in NHS Continuing Healthcare

Why is it important to check your relative’s care home records?

Focus: Falling at the care home

If you have noticed bizarre, misleading or incorrect entries in your relative’s care home records, then let us know and provide details below (remember not to name the care home)…

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