Families often ask us about ‘well-managed needs’ or quote the ‘well-managed needs’ principle, with very little understanding as to how it might apply to their relative’s assessment for NHS Continuing Healthcare (CHC).

The concept of what is a ‘well-managed need’ is admittedly confusing due to a lack of clarity and guidance in the NHS National Framework. As such, its application is frequently misapplied by CHC assessors – leading to incorrect decision outcomes and families being wrongly refused essential free NHS healthcare for their relative’s needs and accommodation.

The guidance in the National Framework for NHS Continuing Healthcare (2018) and the Decision Support Tool and Practice Guidance sets out the following provisions about well-managed needs:

NHS National Framework:

“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.

143. An example of the application of the well-managed needs principle might occur in the context of the behaviour domain where an individual’s support plan includes support/interventions to manage challenging behaviour, which is successful in that there are no recorded incidents which indicate a risk to themselves, others or property. In this situation, the individual may have needs that are well-managed, and if so, these should be recorded and taken into account in the eligibility decision.

144. In applying the principle of well-managed need, consideration should be given to the fact that specialist care providers may not routinely produce detailed recording of the extent to which a need is managed. It may be necessary to ask the provider to complete a detailed diary over a suitable period of time to demonstrate the nature and frequency of the needs and interventions, and their effectiveness.

145. Care should be taken when applying this principle. Sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist.

146. It is not intended that this principle should be applied in such a way that well controlled conditions should be recorded as if medication or other routine care or support was not present (refer to Practice Guidance note 23 for how the well managed needs principle should be applied). The multi-disciplinary team should give due regard to well-controlled conditions when considering the four characteristics of need and making an eligibility recommendation on primary health need (refer to paragraph 59).”

The National Framework also provides a section entitled ‘Well-managed needs and reviews’ which provides:

“188. When undertaking NHS Continuing Healthcare reviews, care must be taken not to misinterpret a situation where the individual’s care needs are being well managed as being a reduction in their actual day-to-day care needs. This may be particularly relevant where the individual has a progressive illness or condition, although it is recognised that with some progressive conditions care needs can reduce over time.”

The Decision Support Tool also provides information about well-managed needs:

The DST provides at paragraph 27: “Needs should not be marginalised just because they are successfully managed. Well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an on-going 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. This principle is incorporated into the domain descriptors of the DST. For example, in the behaviour domain the level of support and skill required to manage risks associated with challenging behaviour helps determine the domain weighting. In such cases the care plan (including psychological or similar interventions) should provide the evidence of the level of need, recognising that this care plan may be successfully avoiding or reducing incidents of challenging behaviour (refer to paragraphs 142-146 of the National Framework and Practice Guidance note 23). For example, where psychological or similar interventions are successfully addressing behavioural issues, consideration should be given as to the present-day need if that support were withdrawn or no longer available and this should be reflected in the Behaviour domain.”

And at paragraph 28: “It is not intended that this principle should be applied in such a way that well-controlled health conditions should be recorded as if medication or other routine care or support was not present. For example, where needs are being managed via medication (whether for behaviour or for physical health needs), it may be more appropriate to reflect this in the Drug Therapies and Medication domain. Similarly, where an individual’s skin condition is not aggravated by their incontinence because they are receiving good continence care, it would not be appropriate to weight the skin domain as if the continence care was not being provided (refer to paragraphs 142-146 of the National Framework).”

The Practice Guidance provides:

PG 23 How should the well-managed need principle be applied?

“23.1 Care should be taken when applying the well-managed need principle. Sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist. For example, in an acute hospital setting, an individual might feel disoriented or have difficulty sleeping and consequently exhibit more challenging behaviour, but as soon as they are in a care home environment, or their own home, their behaviour may improve without requiring any particular support around these issues.

23.2 Where needs are being managed via medication (whether for behaviour or for physical health needs), it may be more appropriate to reflect this in the Drug Therapies and Medication domain. Similarly, where an individual’s skin condition is not aggravated by their incontinence because they are receiving good continence care, it would not be appropriate to weight the Skin domain as if the continence care was not being provided.”

How does this work in Practice?

Perhaps an easier way of putting the ‘well-managed need’ principle is simply to say: what are the care actions that are being carried out on a day-to-day basis to provide the care and what training does the care provider need to properly carry out this care? The CHC assessor should ask pertinent questions to find out the answers.

The circumstances in which a need is being well-managed and the impact on the presentation of the individual will vary from patient to patient. Therefore, it is difficult to give hard and fast examples of the application of a well-managed need, or the questions necessary to identify the need and how it is being met. However, here are some examples which will help you:

1. Supposing a patient has recently moved from one setting to another, and as a result, their needs have changed. It could be that the previous setting was not meeting the care needs – causing other problems – which have now been resolved. In this event ask:

• What has changed?
• Who is now providing the care, and what is being done differently?
• What is being done now on a day-to-day basis to manage the needs, and what training is needed by carers?

Some/all needs created as a result of being in the wrong setting may have disappeared altogether, so it could be that those needs no longer exist. For example, a person with challenging behaviour around a member of the opposite sex could be moved to a single sex setting; in this case the problem has been resolved and no one is having to do anything now to meet that need; the need has disappeared.

2. Consider a patient who may not be coping alone in their own home because they forget to take their medication. This in turn could cause lots of problems that are resolved once the person is being properly supported with their medication being administered by a carer. In the case of the medication being forgotten, the person now needs support with taking their medication. The need is being managed. The fact that support is needed to take medication, should be measured in the DST. The assessor should ask questions such as:

• Is the medication being given covertly?
• Does the person refuse to take the medication?
• What medication is being administered, and does it need a level of skill to administer it?
• What monitoring is needed to ensure that the medication is effective?
• Are there any side effects?

3. Take a patient who is now in a new setting, and the setting is a specialist provision, where the input of the specialist care has made all the difference. In these instances, it is necessary to ask:

• What exactly is being done now to meet the care needs?
• Is the care that is now being undertaken being properly recorded?

It is the analysis of this care, and the training needed to do it, that is important. As specialist care providers will have specialist staff with specialist skills and knowledge that conduct the care, the type and amount of care that these specialist staff are providing needs to be measured/recorded on the DST. The assessor should consider the skill needed to provide the care and what techniques are being used etc.

4. What if a patient was having lots of epileptic seizures and these have now stopped due to being prescribed new medication? In this scenario, the CHC assessor should ask: what is the care that is now needed day-to-day? The care now prescribed might be: “To administer the anticonvulsant medication as prescribed by the GP/Specialist, and to monitor the patient for further seizures.” Before, the patient might have been having numerous fits and needed a lot of skilled management by carers, but are now seizure free. So, in this case, the needs are now well-managed and the need the being met by administering medication and monitoring – this need should be recorded on the DST.

A ‘well-managed’ need is still a need. This means that the care actions needed to meet the need should be recorded on the DST. So, in practice you should see written in the DST as follows: “Anticonvulsant medication needs to be prescribed by the GP/Specialist and carers need to administer the medication and monitor the patient for further seizures.” This, as long as it sufficiently describes the care now needed, will indicate that it has been properly measured within the assessment.

5. It could be that a patient was displaying lots of challenging behaviour and this has been well-managed with medication i.e. meaning that the challenging behaviour is no longer happening. In this event, the CHC assessor should ask:

• What medication is now being administered?
• Does it require a level of skill to administer it?
• Are there any side effects?’
• Is PRN (as required) medication prescribed? This is relevant as it involves additional monitoring to determine whether and when the medication should be administered, and monitoring for effectiveness and adverse side effects.

What if the patient was aggressive, and still is aggressive, but the need for care to prevent this aggression has become easier to manage e.g because they are no longer independently mobile (which stops them from being a high risk to themselves or others)? In this instance, the need has simply decreased due to other factors rather than being well-managed. This could result in the level of need in behaviour reducing.

In conclusion:

The ‘well-managed need’ concept is difficult to grasp for both NHS seasoned assessors and practitioners as well as families, and the questions to be answered will differ from case to case.

Just because there is a well-managed need, it does not follow that there is eligibility for CHC. However, the well-managed need should be identified, and the care required to meet that need should be recorded on the DST.

TIP: It is vital to ask the right questions to figure out what, if any, needs still exist, what training is needed to meet those needs, and whether there have been other changes that now need to be considered as a result of the former needs being met.

For further reading around the subject:

Using the ‘Well-Managed Need’ Principle To Your Advantage

Do you really understand the “Well-Managed Needs” argument? – 2018

Care is routine” – misleading NHS Continuing Healthcare information

If you need help with your relative’s CHC assessment, MDT or appeal, or just want to discuss your situation, visit our Contact Us page via our website, or book a slot with one of our specialist nurses or experienced case-managers.

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the descriptors in the Psychological & Emotional Needs domain, to help you assess your or your relative’s “level of need” in this important domain.

Catch up on parts one to eleven of this series below!

Get Help Breaking Down The Decision Support Tool: An Overview

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

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

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

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

Get Help Breaking Down the Decision Support Tool: Mobility, Part 2

Get Help Breaking Down the Decision Support Tool: Communication

Following the 2018 revisions of the DST, Psychological & Emotional Needs – often abbreviated as “P.E.N.” – moved from domain number three to domain number seven. It now follows Communication and precedes Cognition, highlighting the common interaction between these domains. The assessed levels of need in the P.E.N. domain range from ‘No Needs’ to ‘High’ needs. There is no descriptor for ‘Severe’ or ‘Priority’ needs in this domain, indicating that psychological & emotional needs are unlikely to present an immediate risk to life, or amount to a primary health need in and of themselves. Needs in the P.E.N. domain are important because of their impact on the overall health and wellbeing of the individual and on other domains of the DST, particularly Nutrition, Behaviour and Medications. This interrelation should always be carefully considered in the analysis of the four Key Characteristics.

In our experience, it is relatively unusual to see a ‘High’ level of need in this domain outside a specialist mental health setting. Of course, such cases do exist, but they are rare. Families often underestimate the degree of intervention required to support an assessment of ‘High’ level needs in this domain.

The following clinical factors are relevant to the assessment of needs in this domain:

• Does the person have a history of poor mental health?
• Do they continue to present with psychological symptoms – anxiety, depression, hallucinations, tearfulness, low mood, withdrawal etc?
• Are they prescribed any psychotropic medications – antidepressants, sedatives, antipsychotics etc?
• Are these medications prescribed routinely, or on an as-required basis (PRN)?
• Is the person under the care of the Community Mental Health Team (CMHT)?
• Do they require regular review by a Community Psychiatric Nurse (CPN)?
• Is a Psychiatrist involved in their care?
• When episodes of psychological distress occur, can these be assuaged by staff intervention (distraction, reassurance, comfort, medication)?
• How long do these interventions take to be effective?
• As a result of their psychological state, has the person withdrawn from life?*
• Do the person’s psychological needs have an impact on their physical health (weight loss, lack of enjoyment, inability to perform everyday tasks)?

*REMEMBER – this part of the descriptor does not relate to cognitive ability. A person with a ‘Severe’ level of need in Cognition may be unable to engage with everyday activities owing to the degree of their cognitive impairment, rather than their psychological & emotional presentation.

The DST provides the following advice to those assessing needs in the Psychological & Emotional Needs domain:

There should be evidence of considering psychological needs and their impact on the individual’s health and well-being, irrespective of their underlying condition. Use this domain to record the individual’s psychological and emotional needs and how they contribute to the overall care needs, noting the underlying causes. Where the individual is unable to express their psychological/emotional needs (even with appropriate support) due to the nature of their overall needs (which may include cognitive impairment), this should be recorded and a professional judgement made based on the overall evidence and knowledge of the individual. It could be argued that everyone has psychological and emotional needs, but this domain is focused on whether and how such needs are having an impact on the individual’s health and well-being, and the degree of support required. If an individual has a severe level of need in the cognition domain they may not be able to consciously withdraw from any attempts to engage them in care planning, but careful consideration will need to be given to any evidence of psychological or emotional needs that are having an impact on their health and well-being.

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 respective levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors might be applied at your or your relative’s assessment.

NO NEEDS

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

Key Factors No evidence of distress psychological and/or emotional symptoms.

CASE STUDY – NO NEEDS

Mrs. X.is a cheerful lady who, despite her poor physical health, remains positive about life and continues to enjoy her hobbies – knitting, puzzles, simple tasks in the garden. She participates in the activities in the home and has made some good friends with whom she enjoys a cup of tea and a chat.

Mrs. X told me she was very happy at the care home and enjoys the company of the staff and other residents after living alone for some years.

Mrs. X is not under the care of the mental health team and is not prescribed any medications to manage psychological symptoms.

Mrs. X presents with ‘No Needs’ as psychological and emotional needs are not having an impact on their health and well-being.

LOW

Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which are having an impact on their health and/or well-being but respond to prompts, distraction and/or reassurance. OR Requires prompts to motivate self towards activity and to engage them in care planning, support, and/or daily activities.

Key Factors Evidence of some psychological and/or emotional symptoms (low mood, tearfulness, anxiety, worry, frustration). Low-dose psychotropic medication routinely prescribed. No ongoing involvement by Community Mental Health Team. Responds to attempts to assuage distress. May need some prompts to engage in daily life.

CASE STUDY – LOW

Mr. X has a diagnosis of Mixed Dementia. He presents with a disturbed sleep pattern and often wanders around the home. Zopiclone has been trialled but was not found to be particularly effective and has now been discontinued due to concerns about falls. Mr. X is subject to a Deprivation of Liberty Safeguards assessment (DOLS ) which notes his sleep pattern is disturbed. Mr. X does ask to go home but is easily distracted by carers.

Mr. X’s family describe him as a sociable gentleman prior to his dementia diagnosis.

Mr. X’s Care Plans note he has poor concentration which impacts his ability to engage in activities, although he will usually join-in with support from staff. Mr. X is noted to watch the television and enjoy some of the entertainment.

Mr. X presents as restless and unsettled at times and this appears to have increased following his move to the nursing home. Staff use distraction and reassurance, which are usually effective in resolving episodes of distress.

Mr. X is not prescribed any mood enhancing medication.

Mr. X presents with a ‘Low’ level of need as he presents with mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which are having an impact on his health and/or well-being but respond to prompts, distraction and/or reassurance.

AND

He requires prompts to motivate self towards activity and to engage him in care planning, support, and/or daily activities.

MODERATE

Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being. OR Due to their psychological or emotional state the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.

Key Factors Evidence of frequent psychological and/or emotional symptoms (low mood, tearfulness, anxiety, worry, frustration). Psychotropic medication routinely prescribed. As-required medications may be used to manage acute distress. Routine involvement of Community Psychiatric Nurse/CMHT (monthly or less) Responds to attempts to assuage distress but may take a long time and/or repeated interventions. Needs prompts and support to engage in daily life with which they may not always comply.

CASE STUDY – MODERATE

Mrs. X suffers with severe cognitive impairment and is unable to communicate in any way. She requires full assistance from staff with aspects of daily living at frequent intervals throughout the day and is unable to understand what they are doing or why. Her inability to understand staff’s intentions leads her to become increasingly agitated and restless during any intervention and results in episodes of challenging behaviour which places her and others at risk of harm.

Mrs. X is frequently noted to be very agitated or unsettled within the daily records both during or following intervention and for no apparent reason. Due to her impaired cognition and communication abilities, she is not able to understand or respond to reassurance. She does not recognise her family and thus they are not able to reassure her either. According to the nursing home staff, there are no known or documented methods of reassuring or distracting her.

The degree of impact of her anxiety, agitation and distress is difficult to ascertain due to communication and cognitive impairment; however, when observable impacts are considered, her basic needs are met with assistance from staff and there is unlikely to be sufficient evidence to indicate a severe impact on her health and wellbeing. She eats well and maintains a healthy BMI.

Mrs. X is prescribed Haloperidol on a regular basis every morning which is an antipsychotic medication used in the treatment of agitation. She is not prescribed any other mood enhancing or sedative medications to help alleviate symptoms. Mrs. X may benefit from a referral to the Mental Health Team to see if anything can be done to reduce her distress.

Mrs. X presents with a ‘Moderate’ level of need as she presents with mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being.

HIGH

Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being. OR Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.

Key Factors Evidence of prolonged psychological and/or emotional symptoms (low mood, tearfulness, anxiety, worry, frustration) on a frequent basis. Psychotropic medication prescribed and under titration. As-required medications frequently used to manage acute distress, with varying effectiveness. Ongoing involvement of Community Psychiatric Nurse/CMHT in symptom management. Psychiatrist overseeing titration of medications. Does not respond to attempts to assuage distress. Due to their psychological symptoms, does not engage in daily life, despite prompts and support. Physical health is impacted by psychological symptoms – weight loss, insomnia, lack of self-care, attempts to self-harm.

CASE STUDY – HIGH

Mr. X has a diagnosis of Parkinson’s Disease. Mr. X experiences paranoia and both auditory and visual hallucinations; he can become extremely distressed. The nursing home records indicate that when Mr. X experiences hallucinations he requires much support and reassurance from care staff, which is often ineffective.

Mr. X is prescribed medications to manage his Parkinsonian symptoms (Madopar, Stavelo); unfortunately, these medications do commonly cause hallucinations making it difficult to achieve an effective dose. Mr. X is also prescribed Quetiapine and Sertraline to manage symptoms of agitation and depression.

Mr. X is under the care of a Psychiatrist and a CPN, who visits him every month. He was reviewed by the Psychiatrist in October, when he was noted to be significantly distressed and experiencing weight loss and insomnia. As-required Lorazepam was prescribed and has been administered with increasing frequency over recent months. The nursing home records note increased frequency and duration of hallucinations from December, with increased use of Lorazepam; on occasions this has been used multiple times during a 24-hour period. The records are suggestive of increased need for carer intervention with Mr. X being less receptive to reassurance. Mr. X was reviewed by the Psychiatrist in January and PRN Madopar was discontinued, Donepezil was to be reduced and discontinued after two weeks and a referral was made to the Community Mental Health Team.

Mr. X used to engage in activities and had good relationships with his fellow residents. However, his psychological state is such that he no longer sits in the communal areas, spending increasing amounts of time alone in his room. He often refuses meals and will close his eyes when staff try to cajole him. He is apathetic about life and expressed to the Assessor that he “wished he was dead”.

Mrs. X presents with a ‘High’ level of need as he presents with mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being.

AND

Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.

We hope this has helped you to understand the descriptors in the Psychological & Emotional Needs domain.  Don’t miss the next part of this series, Cognition, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST go to our “Contact Us” page, or 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.

Read below our exclusive interview with Ivan Lewis, former Labour MP for Bury South (1997 to 2019) and the architect behind the National Framework for NHS Continuing Care.

For 14 consecutive years, from 2001 and 2015, Mr Lewis served as a Labour Minister and Shadow Minister in various positions including, amongst many other prestigious roles, Education and Health.

He was appointed Care Services Minister and served in this role between May 2006 and October 2008 under Prime Ministers, Tony Blair and Gordon Brown – a critical era which heralded the National Framework for NHS Continuing Care.

What is NHS Continuing Healthcare?

Ivan: It is described as a package of care arranged and funded solely by the NHS to meet physical and/or mental health needs that have arisen because of disability, accident or illness. Eligibility decisions for NHS Continuing Healthcare (CHC) depend on whether someone’s need for care is primarily due to health needs.

If they meet the eligibility criteria, then responsibility for paying for their care and accommodation rests with the NHS and is paid via a local clinical commissioning group (CCG) and is not subject to means-testing.

Otherwise, care may be funded by the local authority, through Adult Services, which is means–tested, failing which, the individual will have to meet the cost of care from their own private means.

The outcome of any decision as to which organisation (NHS or local authority) will fund care can have significant financial consequences for the individual being assessed.

Getting free-funded NHS care means that they do not have to contribute, while local authority funding may require a contribution towards the cost of care.

In default, private self-paying individuals may be expected to pay many hundreds of pounds, if not thousands a week for their own care.

How were funding decisions made?

Ivan: In 1995, formal guidance, NHS responsibilities for meeting continuing healthcare needs, was issued to both the NHS and local authorities, which left policy-making and drafting written criteria for NHS funded care to local health authorities.

So, decisions about care funding were placed with individual local health authorities around the country, using their own unique assessment criteria. That led to a wide disparity of decisions and inconsistency as to who may or may not get NHS Continuing Care funding – largely dependent on how their Strategic Health Authority undertook their own assessment process.

As each had their own criteria for eligibility, this created nationwide inconsistency in decision-making and outcomes – and what came to be known as the ‘postcode lottery’. Some local health authorities were more generous and were more inclined to award NHS funding whilst others were more restrictive and stringent in applying their criteria.

What was the assessment process like at the time?

Ivan: Given the above unilateral approach adopted by individual health authorities, it was chaotic, inconsistent, and perhaps overall unfair to those applying for NHS funding. Someone living in one Strategic Health Authority may be resolutely denied access to NHS funding, whereas a patient living down the road or another part of the country, falling under the auspices of another health authority but having very similar needs, might well be granted full funding for their care needs.

What do you think was the turning point?

Ivan: The Court of Appeal judgment in the Pamela Coughlan case in 1999 was clearly a pivotal point in the domain of NHS funding. This case replaced the 1995 guidance and contains core principles since adopted and incorporated into the Care Act 2014 and the National Framework, and are still relevant even today.

The case considered whether local authorities could lawfully provide nursing care for a chronically ill patient (Pamela Coughlan), or whether, by law, nursing care had to be provided 100% free as part of the NHS. The court found that, where an individual’s needs are greater than those which the local authority could be expected to provide i.e. the primary need is a health need, responsibility for providing care falls to the NHS, irrespective of the setting where the care takes place. Thus, the case established a dividing line between care that could lawfully be provided by the local authority and care that had to be provided by the NHS.

What happened next?

Ivan: There was some further guidance issued in 2001 to take into account the Coughlan judgment, but it proved too restrictive and still left too much room for local variation. More was needed to be done to give greater clarity as to situations when NHS funding had to be awarded.

What about Grogan?

Ivan: Coughlan was followed by the Grogan case in 2006. Mrs Grogan was repeatedly deemed ineligible on at least three prior occasions for funded care by the NHS, despite presenting with persistent chronic health needs at each assessment. She argued, as per Coughlan, that her needs were primary healthcare needs. The court found, amongst other things, that the NHS did not have – and did not apply – suitable criteria that identified the test or approach to be followed in deciding whether Maureen Grogan’s primary need was a health need; that their decision-making was fatally flawed; and the Primary Care Trust should have followed the Coughlan primary health needs test. The court found in Mrs Grogan’s favour and set aside the NHS’s decision that she did not qualify for NHS Continuing Healthcare and recommended that it reconsider her entitlement to NHS funding, in compliance with the Coughlan case.

Both Coughlan and Grogan are referred to in the NHS National Framework. Primary Care Trusts (now called Clinical Commissioning Groups) were mandated to review previous decisions rejecting or removing NHS funding to ensure that they were Coughlan compliant.

Why was the National Framework introduced?

Ivan: It wasn’t until 2004 that the Government decided it was time for a nationally consistent and coordinated approach to assessing and arranging Continuing Care. So, in an effort to standardise the assessment process for NHS funding and to clearly establish which side of the dividing line an individual’s care needs funding fell into, the Department of Health issued the National Framework for NHS Continuing Healthcare in 2007.

The aim was to create a comprehensive, single, streamlined set of national rules and guidance, in order to make decision-making and resolution of disputes more consistent and transparent. No longer would individual Strategic Health Authorities have their own rules to determine eligibility, but they would now be governed by a national tool for decision-making. These national criteria on care eligibility would have greater clarity and could be interpreted consistently. That meant that individuals with similar health needs should have confidence in a robust assessment (and appeal) process and consistent outcomes, regardless of where they lived, their diagnosis or personal circumstances.

The National Framework has since been updated in 2009, 2012 and more recently in 2018. With each revision, the National Framework has become more proscriptive, with better guidance to help both NHS practitioners and the public understand this complex assessment process.

In retrospect, are you pleased with the way things went?

Ivan: No doubt the concept of a National Framework was a significantly big improvement on how NHS assessments should be carried out. It streamlined the whole process, whilst educating those appointed by the NHS to represent them in the assessment process, and at the same time, gave guidance to the ‘mystical’ art of assessments and appeals. The intended outcome was to promote confidence and consistency, and fewer challenges to outcome decisions rejecting funding.

I was quoted in the Department of Health Press Notice, streamlining the system for NHS continuing care, at the time, as saying:

“Thousands of people in England are likely to receive more help towards their care costs.

The new National Framework for NHS Continuing Healthcare, published today, has been developed in close consultation with voluntary groups, professional bodies and patient/user groups and will make funding decisions on who is eligible for NHS continuing care fairer, faster and easier to understand.

It will create consistent access to fully funded care with clear national policies for deciding eligibility. It also abolishes different nursing bands for free nursing care – freeing up more time for nurses and cutting down on repeated patient assessments. The Framework will be put into action by the NHS and Local Authorities from October this year, and is expected to cost up to £220 million in the first year of operation….

We understand that families do have to make difficult and emotional decisions when someone has to go into residential care and this can be made worse by having to consider how this will be funded.

At present, people with identical care needs can receive different decisions on whether they are eligible for fully funded continuing care, based purely on where they live.

The new system will address these anomalies and will introduce one national system for everyone needing this type of care in England.”

How does the Government’s new social care cap of £86,000 impact on CHC?

Ivan: The cap has no direct relevance to NHS Continuing Healthcare funding as it relates to the provision of social care, which is means-tested. CHC, however, is provided by the NHS and is not means-tested. Quite simply, if you meet the eligibility criteria for CHC, the cost of your care and accommodation should be met in full by the NHS – free of charge – without having to contribute a penny! So before you are ever considered for social care, you should be assessed for CHC first.

CTBD comment: Thank you, Ivan Lewis, for sharing your thoughts with us.

We now have a more comprehensive rulebook setting out the CHC process, start to finish, but unfortunately, the job is far from complete. There is still work to be done to make improvements to ensure fairer and faster outcomes with more accessibility for families trying to get to grips with this unduly complex funding process.

The National Framework still remains open to subjective interpretation of the national guidance, and that in turn creates anomalies and inconsistencies nationwide. Sadly, the postcode lottery remains very much alive today as it did some 22 years ago when Coughlan was being debated.

For further reading around the subject, read these helpful blogs:

How To Avoid Selling Your Home To Pay For Care…

Part 1: But Pamela Coughlan is Not Really Eligible for CHC, is She …?

Part 2: Pamela Coughlan – Needs of a “Wholly Different Category”

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

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

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

For more free resources and information about every aspect of CHC, visit Care To Be Different.

If you need help assessing your relative’s level of need in any domain on the DST, or advocacy representation at an MDT or appeal, don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.

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.

Preparing for an MDT. We have received many comments on our Facebook page recently following a post by a contributor who said that her mum is soon to be assessed for NHS Continuing Healthcare funding (known colloquially as CHC). She goes on to describe her mother’s admission to hospital for surgery and her other conditions, namely Parkinson’s and osteoporosis, dementia and confusion. She is optimistic that her mother will receive CHC as a result of the forthcoming assessment.

Our contributor says that she has widely read up on CHC and believes that her mother will be found eligible for CHC funding, but is not unrealistic to the challenges of the process where she says, “anything can happen”. She goes on to ask whether it is preferable for her to be present or not at the CHC assessment, when it is being carried out.

Thank you to our contributor and all those who posted a reply on our Facebook page, in response. These comments raise some useful points.

Understanding the assessments

Firstly, there are 2 assessments. The first is the Checklist assessment – a screening tool to see if the applicant will pass on to the second stage – the full assessment – which is carried out by the NHS Clinical Commissioning Group’s (CCG) Multi-Disciplinary Team panel (MDT).

Understanding the Checklist Assessment

Can the NHS refuse to carry out an initial Checklist?

The MDT is comprised of at least 2 professionals from different healthcare professions (usually including one healthcare and one social care professional) who are knowledgeable about the individual’s health and social care needs, and where possible, have been recently involved in their assessment, treatment or care, and who must be trained in the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care so that they have the relevant skills and knowledge to carry out the assessment. The National Framework sets out the rules and guidance to be followed at assessments.

The appointed MDT representatives must be trained and be fully conversant and cognisant of the workings of the National Framework (all 167 pages) in order to fulfil their obligations and conduct fair and robust assessments of a patient’s eligibility for CHC. Sadly, contrary to the requirements of the National Framework, we hear that many appointed representatives haven’t had sufficient training in the National Framework or don’t fully understand it. Poor assessments will inevitably lead to poor outcomes for families and CCGs rejecting some perfectly proper applications for CHC funding.

As some of our readers have already commented in response to this Facebook post, and in answer to the contributor’s question – it is VITAL that you attend both the Checklist assessment and the MDT. Otherwise you have no way of knowing what was said or how the meeting was conducted, who represented the CCG or what their professional qualifications or what prior involvement they have had in your relative’s care. There will be no way of knowing if your relatives healthcare needs were accurately and robustly assessed?

You simply have to be there! If you can’t make the date, see if you can adjourn the assessment to a more convenient time.

Take someone with you for support

Take someone with you to the meeting to take notes. It can be emotional and emotive, especially as you will be discussing your loved one’s complex and challenging care needs.

There is too much to absorb if going alone. You might miss out on important points you want to make. Another pair of eyes and ears is always useful if you can have someone responsible to assist you.

You know your relative’s needs and can therefore correct any misunderstandings or misinformation the CCG’s assessors might have got in this short window of assessment. If you’re not at the MDT, you cannot contribute as easily.

Don’t forget, you are also entitled to have a professional advocate to represent you at the MDT.

Read our blog: Can The MDT Panel Refuse To Proceed If I Have An Advocate?

The CCG should give you reasonable advance notice of the MDT assessment so that you (and any appointed representative) can attend. If they do not then you could have grounds for an appeal. The point is you really need attend the MDT.

But just being there is not good enough. You have to have an in-depth knowledge of the National Framework and its guidance to understand how the assessment process works, what the MDT are looking for when assessing eligibility and how to spot mistakes. Turning up to an MDT without proper advance preparation is not necessarily going to make a difference.

Take time to research the subject well

Luckily, our Care To Be Different website has a wealth of free information to help you at every stage of the process. You can also buy our helpful book “How To Get The NHS To Pay For Care” available as a paperback or PDF download. Otherwise, call one of our Specialist Advice Helplines and speak to an experienced CHC nurse or Case Manager.

We know that battling the CCG for CHC funding is never a foregone conclusion.

Like so many other families, you may assume that you relative will automatically qualify due to their needs being so great. This may be correct – but sadly, most families are in for a big shock.

You may think you know the National Framework well and that you will be able go at it alone and see off the MDT assessors but make no mistake, the bar to obtaining CHC is set very high.

This is a big challenge

The CCG won’t just roll over and award funding. They will fight for every penny to protect budgets, however obvious your relative’s qualification for CHC may appear.

Collate as much evidence as you can and prepare yourself for a battle. This is far more time-consuming and complex than it sounds. Then there is the challenge of how to best present your information in a coherent manner. This is to make your best points. Irrelevancies can side-track you and may undermine your relative’s application for CHC as this stressful and emotional time. At an assessment you are arguing for your relative’s funding and the stakes are high. Respondents in the midst of their application for CHC have said, “the paperwork is mind blowing…”, “dunno where to start, I’m not ready for this meeting, by a long shot”, “…I am fuming, so how does one stay calm?”, “… a long, long journey ahead, I’m afraid”, “It’s gruesome…”

Yes, you have to make the most of the MDT and absolutely give it your best shot.

The CCG assessors, of course, have a huge advantage; both trained and practised in using the National Framework and the assessment tools.

The National Framework is largely designed to assist NHS assessors, rather than members of the public with a relative in need of care. Unfortunately, not all CHC assessors understand the assessment process themselves or apply it correctly. That is why you (and your advocate) need to attend, if you are going to be of any help to your relative.

“It’s a full time job – to have any chance of getting full funding – you need to prepare, prepare and prepare – you must know the guidance, regulations and law inside out and stand your ground..”

Research as much as you can

Don’t be afraid to seek help as this can save you a lot of time and frustration. You will find the appeal process slow and stressful not to mention the impact this will have on hard-earned savings paying for care.

It can even mean having to sell your relative’s home whilst the appeal process trudges forward slowly to a final conclusion. This can go on for several years and cause many sleepless nights.

You may not succeed at the MDT but you can certainly help your chances by preparing well for it.

Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

If you need assistance or guidance, the common mistake is to leave it until the last minute to seek help. You are entitled to ask a professional advocate to represent you. Most do get far better outcomes. They’re now arguing from strength on a level playing field and the CCG assessors will be more wary to carry out more robust and fair assessments.

No advocate, however skilled, can argue for healthcare needs where they simply don’t exist. Give them as much evidence as you can, in advance. They will then be able to advise you on your chances of success.

Preparing for an MDT properly takes time, and realistically, you can’t expect an expert to pull out the stops and absorb all the information for a robust assessment if you contact them at short notice on the day of your MDT! Early preparation is essential.

Summary:

1. We strongly recommend that you attend any assessment.
2. It’s a good idea to take someone with you.
3. Turning up is insufficient on its own, instead do your research beforehand.
4. Read as much as you can.
5. Don’t be afraid to ask for help, where necessary.
6. Don’t have the wool pulled over your eyes. Get professional advocacy support to maximise your chances of success.
7. Failure to get it right could see your relative’s savings and assets eroded to pay for care fees.

Here’s a selection of further blogs to help you read around the subject when preparing for your 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?

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

What to expect when you attend a Continuing Care assessment

Attending the Multi-Disciplinary Team meeting – some useful guidance

Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

Post a reply below with your experiences of MDTs to help others going through the same thing…

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

Don’t miss parts one, two, three, four, five, six, seven and eight of this series!

Get Help Breaking Down The Decision Support Tool: An Overview

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

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

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

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Following the 2018 revisions of the DST, Mobility kept its original position at domain number five. However, it now follows Skin and precedes Communication. As we discussed in our previous blog on the domains of the DST, the new proximity of the Skin and Mobility domains emphasises the common interaction between them. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.

The assessed levels of need in the Mobility domain range from ‘No Needs’ to ‘Severe’. There is no descriptor for a ‘Priority’ level of need in this domain, indicating that an issue with mobility is unlikely to present an immediate risk to life. That being said, a ‘Severe’ level of need in this domain is likely to result in significant intensity and complexity, in and of itself. In our experience, very few individuals meet the stringent criteria for a ‘Severe’ level of need in this domain, which far exceed an inability to weight bear or mobilise independently.

The following clinical factors are relevant to the assessment of ‘No’, ‘Low’ and ‘Moderate’ needs in this domain:

• Can the person move around independently?
• Do they use any mobility aids? (Walking stick, Zimmer frame etc.)
• Is there any history of falls?
• Have there been any recent falls?
• Were any injuries sustained?
• What is the person’s score on the Falls Risk Assessment?
• Can the person bear their own weight?
• If not, do they need a hoist to transfer?
• If so, is this a standing hoist (Stand-Aid) or full hoist (sling)?
• Can the person alter their own position in bed or chair?
• How many members of staff are required to assist with moving & handling?
• Is the person able to assist with moving & handling procedures?
• Does the person cooperate with moving & handling procedures?

The DST provides the following advice to those assessing needs in the Mobility domain:

This section considers individuals with impaired mobility. Please take other mobility issues such as wandering into account in the behaviour domain where relevant. Where mobility problems are indicated, an up-to-date Moving and Handling and Falls Risk Assessment should exist or have been undertaken and the impact and likelihood of any risk factors considered. It is important to note that the use of the word ‘high’ in any particular falls risk assessment tool does not necessarily equate to a high level need in this domain.

This underlines the crucial importance of verifiable, written evidence to support the assessment of needs in this domain. For example, in the case of a person who is at risk of falling, the MDT will expect to see a recent Falls Risk Assessment confirming the level of risk and steps taken to mitigate this; in the case of a person who is immobile and unable to weight bear, the MDT will expect to see a Moving & Handling assessment confirming this. A lack of appropriate documentation may result in a lower level of need being applied, regardless of the verbal testimony of family and/or staff.

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 ‘No’, ‘Low’ and ‘Moderate’ levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors of need might be applied at your or your relative’s assessment.

NO NEEDS

Independently mobile

Key Factors Moves around independently, without aids. No identified risk of falling or recent falls history.

CASE STUDY – NO NEEDS

Mrs. X is independently mobile and walks around the care home freely. She is able to stand without assistance and does not require any walking aids. Mrs. X has not suffered any falls since her admission to the home six months ago. She does not require any moving or handling interventions by staff and is able to alter her own position in bed or chair, which she does at frequent intervals without prompts.

Mrs. X presents with ‘No Needs’ as she is independently mobile.

LOW

Able to weight bear but needs some assistance and/or requires mobility equipment for daily living.

Key Factors Mobilises with some assistance. May require the use of mobility aids (walking stick, Zimmer frame etc.). No identified risk of falling or recent falls history.

CASE STUDY – LOW

Mr. X is independently mobile and walks with a Zimmer frame. He has not suffered any falls since his admission to the home and does not have a history of falls pre-admission. Mr. X can change his position in bed and chair and does so regularly without prompting. As his dementia progresses, Mr. X may need some gentle reminders from staff to use his Zimmer frame when he is moving around the home. To date, he has not attempted to mobilise without his Zimmer, but staff keep a close eye to ensure his safety.

Mr. X presents with a ‘Low’ level of need as he is able to weight bear but needs some assistance and/or requires mobility equipment for daily living.

MODERATE

Not able to consistently weight bear. OR Completely unable to weight bear but is able to assist or cooperate with transfers and/or repositioning. OR In one position (bed or chair) for the majority of time but is able to cooperate and assist carers or care workers. OR At moderate risk of falls (as evidenced in a falls history or risk assessment)

Key Factors Ability to weight bear is inconsistent. Cannot bear their weight, but can help carers to change position or transfer. Chair- or bed-bound, but can help carers to change position or transfer. At a “moderate” risk of falls and has suffered some recent falls.

CASE STUDY 1 – MODERATE

Mr. X is unable to weight bear and completely dependent on two members of staff for all transfers and movement in bed. He is able to co-operate with staff and follow instructions but is unable to stand for even short periods sufficient to transfer. A full hoist is required to assist him to transfer from bed to chair etc. Mr. X is diagnosed with osteoarthritis and osteoporosis and staff report that he can be stiff at times, especially in the morning. He is prescribed PRN Paracetamol for pain if required.

Mr. X does not have any contractures, but staff report that it can be difficult to manage his catheter at times as his hips are restricted due to stiffness which eases after a short time.

Mr. X has previously suffered with falls which have resulted in significant fractures. He continues to be assessed as being at a high risk of falling and, on one occasion shortly after admission, he was noted to have tried to sit on the side of his bed without assistance. Staff moved him to a quieter room as they noted that noisy areas increased his anxiety, since the change of room he has not attempted to get up. He suffers with periods of anxiety, but even when agitated he does not try to get out of bed or chair, and staff report that bed rails are not required when in bed as he does not move.

Mr. X presents with a ‘Moderate’ level of need as he is completely unable to weight bear but is able to assist or cooperate with transfers and/or repositioning.

NOTE – Mr. X’s Falls Risk Assessment indicates a high degree of risk. However, this does not equate to a high level of need in this domain as he has suffered only one fall since his admission and no longer attempts to stand and walk unaided.

CASE STUDY 2 – MODERATE

Mrs. X is able to mobilise with a Zimmer frame and the assistance of one carer. However, she is unsteady and has poor balance and will sometimes push herself back when mobilising and the staff have to catch her and allow her to lower herself to the floor.

Sometimes a wheelchair is used to transport Mrs. X when she is feeling tired or is particularly unsteady.

Mrs. X has suffered one fall since admission to the care home, which was not witnessed by the staff. No injuries were sustained.

Mrs. X has an alarm mat at the side of her bed and when the alarm goes off, she will sit on the side of the bed and wait for staff to attend to her. Mrs. X is able to use the nurse call system to alert staff if she needs their help.

Falls Risk Assessments indicate a moderate risk of falling.

Mrs. X presents with a ‘Moderate’ level of need as she is at moderate risk of falls (as evidenced in a falls history or risk assessment).

We hope this has helped you to understand the first three descriptors in the Mobility domain.  Don’t miss the next part of this series, Mobility 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 us or speak to one of our specialist Advice Lines to discuss your case today.

If you want us to review your case or 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.