We tend to think that it is just the elderly and infirm in our community who have healthcare needs, whether through natural ageing or the onset of a specific chronic and challenging long-term illness, advanced Dementia, Alzheimer’s and Parkinson’s.

However, it is easy to forget that FREE NHS Continuing Healthcare Funding (CHC) is available to anyone aged 18 and over who has a ‘primary healthcare need’ – ie whose main need for care is due to complex and challenging health reasons, rather than social care.

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

Individuals may be entitled to CHC as a result of a disability, accident or illness. The assessment process is complex and the bar to achieving CHC is set very high. We wonder how many thousands of families with young adults over 18 with challenging healthcare needs are missing out on free NHS packages of care for their children?

For more information as to Read our blog: Who is entitled to CHC?

We came across a scenario recently concerning care for young adults which we wanted to share with you. It concerned a young individual (let’s call them ‘C’ for anonymity) who suffered life-changing head injuries, leaving C totally reliant on 24 hour round-the-clock care.

After turning 18, and following a lengthy period of recuperation, C’s mother, ‘Mrs Z’, was successful in obtaining NHS Continuing Healthcare Funding for C’s intensive healthcare needs. C spent many years in a rehabilitation care home, before the Clinical Commissioning Group (CCG) agreed to provide an extensive CHC package of care to meet C’s complex care needs, via an approved care agency, so that they could return home to be cared for.

C remained at home for about 2 years being well looked after and seemed to be doing much better under their mother’s constant watchful eye. However, the cost of CHC care at home was undoubtedly expensive and far more so than if C were placed in a residential care/nursing home.

The appointed care agency in situ gave notice to quit, which meant the CCG had to act quickly to provide continuity, so that there was no gap in C’s care needs. Instead of sourcing alternative carers (which would be the obvious thing to do), the CCG insisted that that they wanted to put C back into care once again – just as an interim measure – until they could look for alternative home carers.

Naturally, Mrs Z was sceptical as to the CCG’s ulterior motives. The logical conclusion was that the CCG’s ruse was primarily all about saving cost and clearly not about C’s well-being, or what was in C and the family’s best interests. She was distraught with the CCG’s callous, unsympathetic and thoughtless attitude, which seemed designed to cause her maximum stress and anxiety, to what was already a stressful situation. The thought of C going back into care and undergoing yet another lengthy battle with the CCG to bring C home again, left Mrs Z physically and emotionally drained and exhausted, and unwell. Her anxiety was compounded by the CCG’s bullish stance in their intended goal and that she was given so little time by the CCG to react and protect C’s wellbeing. She was overwhelmed by the realisation that she seemed to have so little power to stop the NHS machinery, seemingly conspiring against her to steamroll ahead with their desire to take C back into care, against her wishes.

However, as a concession, the CCG invited Mrs Z to find alternative carers to consider for their approval if she wanted C to remain at home. She did so, but the CCG initially refused to consider them, even though they were perfectly qualified to provide care at home for C’s complex and challenging needs. Why? The only implied explanation can be down to cost, and that it would be considerably cheaper for C to be placed in a care home instead.

Mrs Z argued that C was doing much better at home under her watchful eye and in her loving arms, where she could monitor the care being provided by agency staff. The proposed care home was an hour’s drive away, had suffered numerous COVID-related deaths and had very restricted visiting rights. She feared that C would be left abandoned for days in-between permitted visits, in the hands of strangers. As a mother, she was clearly very worried as to what might go on behind ‘closed’ doors whilst C was out of her sight. How could she ever relax when she wasn’t around to oversee and monitor C’s care needs and be sure that C was being well-looked after?

She argued with the CCG that it was not in C’s best interests to be moved and she felt it would be a retrograde step and detrimental to C’s health. She had previously fought the NHS for so many years to bring C home, and once home and settle for nearly 2 years was doing much better, it seemed that the CCG wanted to negate all that – just to suit their budget (ie financial gatekeeping). This was a heartless and cruel step which seemingly did not put C at the centre of the NHS Continuing Healthcare process. Plain and simple – this was all about money, however disguised.

One of the underlying core principles of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised 2018) makes it clear that the whole NHS assessment and decision-making process is to be “person-centred” ie placed at the heart of the assessment and care-planning process. The individual (and their representatives) must be fully involved and placed at the centre of the assessment process and their view, aspirations and preferences are to be considered. The National Framework is littered with many references to this key approach – for example, see pages 10, 22 ,48, 98-99 & 164 to name but a few. What’s more, CHC Funding is about healthcare needs and so the CCG should not play ‘financial gatekeeper’ to deny funds just to suit their budgets – see pages 129 & 132.

Mrs Z sought legal help from Farley Dwek Solicitors to fight her corner and protect C. Luckily, the story ended well for C and Mrs Z, and the CCG ultimately relented and agreed to commission care for C at home from Mrs Z’s sourced agency. It is such a shame that Mrs Z and her family had to endure such stress, quite unnecessarily and were put through this ordeal.

What can you learn from this?

1. CHC Funding is not just for the elderly. Young adults have rights, too! CHC is available to all adults aged 18 and over. Apply for an assessment if you think that your child might qualify for CHC Funding.

2. Paragraph 63 of the National Framework (below) provides that care can take place in any care environment, whether in your own home, a care or nursing home, hospice or other care setting. The setting is irrelevant if the individual has a primary health need and meets the criteria for CHC Funding.

63. “NHS Continuing Healthcare may be provided in any setting (including, but not limited to, a care home, hospice or the person’s own home). Eligibility for NHS Continuing Healthcare is, therefore, not determined or influenced either by the setting where the care is provided or by the characteristics of the person who delivers the care.”

3. Arguably, forcing people out of their homes and into residential facilities, contravenes Article 8 of the European Convention on Human Rights, which enshrines the right to respect for private and family life:

  “1. Everyone has the right to respect for his private and family life, his home and his correspondence.”
  “2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is     necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the     prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”

4. Insist on your child’s rights to care in their own home if you believe that is in the their best interests.

5. You MUST read the Gunter case (page 135 of the National Framework) and our excellent blog on the subject of care at home:

Are You Missing Out On Your Entitlement To Care At Home? The Gunter Case

6. Make sure you have the necessary authority to act for your child. If they have mental capacity ensure that you have a Lasting Power of Attorney to enable you to make decisions on their behalf and in their best interests. Otherwise, the CCG or other body might have the power to interfere and make those decisions for your child and against your wishes, and what you believe is in their best interests.

If, however, your child does not have mental capacity to make decisions for themselves, take early steps to gain control of the situation and their affairs by applying to the Court of Protection for a Deputyship Order. This can be expensive and take time, so act quickly to avoid putting your precious child’s care in the hands of strangers.

Self-defence – Protect yourself and make a Lasting Power of Attorney

Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”.

Cognition and mental capacity – what’s the difference?

7. Act decisively and get legal help if you need it. Remember, you don’t have to fight this battle alone. Browse our website for a whole range of free information and resources to help you, or contact our Advice Lines for more specific questions on care funding and the assessment process.

8. Don’t give up your rights and help spread the word!

Why is CHC always overlooked? Help spread the word…

If you need hands-on support with an assessment for CHC Funding for your child or have been rejected for CHC and want to know how to appeal, need advocacy, or just want to talk through your situation, please get in touch.

Vital information about paying for care

Quite understandably, many families going through the assessment or review process find it overwhelming and emotionally fraught as they fight for their child’s rights for CHC Funding. There is professional expert help available at all stages of the process. Visit our 1-2-1 Support page.

For young adults with complex needs, you may be pleased to hear of a unique service offered at: https://www.farleydwek.com/young-adults-with-complex-needs/

This series takes a detailed look at the domains of the Decision Support Tool (DST). This week we continue our examination of the Breathing domain, analysing the descriptors for a ‘High’, ‘Severe’ and ‘Priority’ level of need.

Don’t miss parts one and two of this series:

Get Help Breaking Down the Decision Support Tool: An Overview

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

Last time, we looked at the first three descriptors in the Breathing domain – ‘No Needs’, ‘Low’ and ‘Moderate’ – which are by far the most common. This week we examine the ‘High’, ‘Severe’ and ‘Priority’ levels of need.

REMEMBER – Breathing is one of only three domains in which a person can “score” all six levels of need: No Needs’, ‘Low’, ‘Moderate’, ‘High’, ‘Severe’, ‘Priority’. The vast majority of people who are assessed for CHC funding will have needs falling under one of the first three descriptors. As we look closer at the descriptors for a ‘High’, ‘Severe’ and ‘Priority’ level of need, the reasons for that will become clearer.

The following clinical factors are relevant to the assessment of high, severe or priority level needs in this domain:

• Severe shortness of breath (SOB), breathlessness or difficulty in breathing (DIB).
• Is this a chronic (long term) or acute (short term) condition?
• Consider diagnosis of heart/circulatory problems, COPD/COAD, emphysema, pulmonary embolism, pulmonary fibrosis, sleep apnoea, asthma, bronchitis, pneumonia, tracheostomy, spinal injury, motor neurone disease, or any other condition that might impact on breathing.
• Medication prescribed and route of delivery: steroids, inhalers, nebulisers, oxygen.
• 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?
• Is there a need for mechanical ventilation?
• Is this non-invasive (e.g. via nasal or facial mask) or invasive (e.g. via tracheotomy)?
• What is the mode of ventilation –e.g., BiPAP (Biphashic Positive Airway Pressure) or CPAP (continuous Positive Airway Pressure)?
• Does shortness of breath occur on exertion or at rest?
• Does shortness of breath impact on other domains, e.g., mobility, nutrition, medication, communication? (“Daily living activities”)
• Can the person cough and expectorate secretions effectively?
• Is there a need for suctioning?

NOTE – While both BiPAP and CPAP are modes of mechanical ventilation, the risks associated with BiPAP are far greater. Someone using a CPAP machine triggers the breath spontaneously and that breath is then supported by positive pressure from the vent (to open the lungs more fully). An individual using a BiPAP machine is dependent on the ventilator to trigger and deliver the breath. This helps us to understand why the assessed level of need for a BiPAP machine (severe) is considerably higher than that for a CPAP ventilator (moderate). The level of need reflects the risk to the individual should complications arise/needs not be met.

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.

IMPORTANT – Don’t forget to consider how breathing problems impact on daily living activities, as this will significantly affect the assessed level of need:

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

Those with ‘No Needs’,’ Low’ or ‘Moderate’ levels of need in this domain will suffer no, low or moderate impact on some of their daily living activities. An individual with a ‘High’, ‘Severe’ or ‘Priority’ level of need will see ALL  of their daily living activities affected, to a significant or severe degree.

HIGH

Is able to breathe independently through a tracheotomy that they can manage themselves, or with the support of carers or care workers. OR Breathlessness due to a condition which is not responding to treatment and limits all daily living activities

Key Factors Non-problematic tracheotomy; self-caring with minimal assistance Episodes of breathlessness, which are not responsive to rest/medication All daily living activities affected (mobilising, eating/drinking/communicating)

CASE STUDY 1 – HIGH

Mr. X required a tracheotomy after suffering laryngeal cancer three years ago. He reports no concerns or complications at this time and is largely self-caring. Mr. X is fully cognisant and is aware of the risks associated with his tracheotomy. However, Mr. X does require assistance in caring for his tracheotomy as he is losing dexterity.

Mr. X is able to cough effectively and is usually able to manage any excess secretions himself using a flexible suction catheter. He may sometimes require assistance from staff due to losing dexterity, and will call for help using his buzzer when required. Staff need to help him to clean the tracheotomy tube several times each day to ensure it remains free of blood and mucus. The inner tube needs to be changed regularly and routine suction is required during changes (remove inner tube, suction, insert clean inner tube).

A dry dressing is applied around the tracheotomy site to ensure cleanliness. Mr. X prefers to wear a scarf when he goes into the garden and likes staff to remind him of this.

Mr. X presents with a ‘HIGH’ level of need as he is able to breathe independently through a tracheotomy that he can manage himself, or with the support of carers or care workers.

CASE STUDY 2 – HIGH

Mrs. X suffers from COAD (chronic obstructive airway disease) and pulmonary hypertension. She is short of breath at rest and on any exertion.

Mrs. X is prescribed continuous oxygen at the rate of 1 litre per minute to assist her breathing and maintain oxygen saturation levels. Mrs. X is also prescribed Tiotropium Bromide inhaler 1 dose daily.

Mrs. X gets breathless when she is speaking, when she moves around and when she is eating. Mrs. X is unable to mobilise independently due to breathlessness and uses a wheelchair to move around the home. Staff need to make sure she is positioned in an upright position at all times to assist her breathing.

Mrs. X is able to express her needs and so can alert staff to any discomfort or exacerbations of her condition. However, breathlessness can impact on her ability to speak clearly and in full sentences at times.

Mrs. X may benefit from a review of her condition by the Respiratory Team. It would appear her symptoms are not currently well-managed and that her activities of daily living are increasingly affected.

Mrs. X presents with a ‘HIGH’ level of need as she suffers breathlessness due to a condition which is not responding to treatment and limits all daily living activities.

SEVERE

Difficulty in breathing, even through a tracheotomy, which requires suction to maintain airway. OR Demonstrates severe breathing difficulties at rest, in spite of maximum medical therapy. OR A condition that requires management by a non-invasive device to both stimulate and maintain breathing (bi-level positive airway pressure, or non-invasive ventilation).

Key Factors Problematic tracheotomy requiring skilled intervention Breathless at rest, unresponsive to all treatment Inhaler and/or nebuliser and/or oxygen therapy not effective All daily living activities severely affected Non-invasive (e.g., via-facial mask) mechanical ventilation required (e.g. BiPAP)

CASE STUDY 1 – SEVERE

Mr. X required a tracheotomy after suffering laryngeal cancer three years ago. Mr. X is fully cognisant and is aware of the risks associated with his tracheotomy. However, Mr. X does require assistance in caring for his tracheotomy as he is losing dexterity.

Mr. X experiences copious secretions, worsened by increased immobility and a recent chest infection. He is able to cough, but this is not sufficient to clear secretions and he is at high risk of occlusion. Suction is performed by trained staff using a flexible suction catheter on an as-required basis. Mr. X is able to alert staff to any difficulties using the Nurse Call system but does need care to be delivered immediately and unpredictably.

Staff clean the tracheotomy tube several times each day to ensure it remains free of blood and mucus. The inner tube needs to be changed regularly and routine suction is required during changes (remove inner tube, suction, insert clean inner tube).

A dry dressing is applied around the tracheotomy site to ensure cleanliness.

Mr. X presents with a ‘SEVERE’ level of need as he has difficulty in breathing, even through a tracheotomy, which requires suction to maintain airway.

NOTE – The difference between the ‘HIGH’ and ‘SEVERE’ levels of need arises from the type and frequency of intervention required. While our Mr. X with a ‘HIGH’ level of need was able to look after his tracheotomy with minimal assistance, this Mr. X requires much more intensive, skilled attention from staff, the need for which is unpredictable. Difficulty in managing secretions mean he is at risk of suffocating, should the tracheotomy tube become occluded. In addition to regular tracheotomy care and cleaning, he requires suction be performed on an as-required, but timely, basis.

CASE STUDY 2 – SEVERE

Mrs. X is diagnosed with COAD and type 2 respiratory failure. Her condition is chronic and has required numerous hospital admissions. Mrs. X is nearing the end-stage of the disease progression and has difficulty breathing all the time.

Mrs. X has a Nippy3 ventilator and settings are fixed by the Respiratory Team for non-invasive ventilation via mask from 22.00 to 06.00 and for 4 hours in afternoon. Oxygen is used whilst Mrs. X is on NIV (non-invasive ventilation), as she is now unable to maintain sufficient levels independently.

During the rest of her waking day, Mrs X has oxygen 3L per minute via nasal cannula from oxygen concentrator and is self-ventilating. This is the maximum flowrate that she is able to tolerate. Mrs. X is at risk of hypercapnia; her oxygen saturations are kept between 88 and 92% but low saturations do impact her activities of daily living.

Mrs. X now struggles to eat even small amounts of food and is nutritionally at risk. She cannot speak more than a few words before gasping for breath. She is nursed in bed in an upright position for maximum comfort. She requires regular assistance to change her position and is breathless during such interventions.

Mrs. X has been prescribed numerous inhalers, nebulisers, steroids and diuretics in an attempt to manage her condition. However, these now have limited effect and are only used to promote maximum comfort.

Mrs. X is understandably distressed and frightened by her condition and struggles to sleep for any length of time. She requires much TLC and reassurance from sympathetic staff.

Mrs. X presents with a ‘SEVERE’ level of need as she demonstrates severe breathing difficulties at rest, in spite of maximum medical therapy.

CASE STUDY 3 – SEVERE

Mrs. X is diagnosed with type 2 respiratory failure, COAD and OSA (Obstructive sleep apnoea)/OHS (Obesity Hyperventilation syndrome). Her condition is chronic and has required numerous hospital admissions. Mrs. X requires non-invasive mechanical ventilation overnight and for 2 hours during the day to maintain adequate oxygen levels and removal of Co2.

Mrs. X has a Nippy 3 ventilator and settings are fixed by the Respiratory Team for non-invasive ventilation via mask from 22.00 to 06.00 and for 3 hours in afternoon. Oxygen is not used whilst Mrs. X is on NIV (non-invasive ventilation).

During the rest of her waking day, Mrs X has oxygen 0.5L per minute via nasal cannula from oxygen concentrator and is self-ventilating.

Mrs. X has tolerated the non-invasive ventilation for a while but struggles to fix mask in place due to her osteoarthritis in her hands. This resulted in admissions to hospital and high dependency treatment. In the 24-hour care setting, Mrs. X is given assistance to place the mask appropriately overnight and maintain a good level of ventilation.

Mrs. X presents with a ‘SEVERE’ level of need as she has a condition that requires management by a non-invasive device to both stimulate and maintain breathing (bi-level positive airway pressure, or non-invasive ventilation).

NOTE – Mrs. X 2 and 3 would both meet the descriptor for a severe level of need in this domain. However, when we consider the Key Characteristics, Mrs. X 2 presents with significantly more complexity, intensity and unpredictability of need. Her daily living activities are more severely impacted by breathlessness and her condition is not responsive despite maximum intervention. Mrs. X 2 and 3 actually require the same type of treatment (non-invasive mechanical ventilation, oxygen therapy via nasal cannula), but the intensity of that treatment, and the demands on the care team, are quite different. This is a good example of why it’s important to consider which specific part of the descriptor is met and how the Key Characteristics are affected by the needs described, rather than relying on the fact of an “assessed level of need”.

PRIORITY

Unable to breathe independently, requires invasive mechanical ventilation.

Key Factors Requires invasive mechanical ventilation (e.g., via tracheotomy) 24-hour, skilled care, usually confined to an acute (hospital) setting Immediate and critical risk to life should needs not be met

Mr. X has a complete C4/5 spinal cord injury, sustained in a road traffic accident five years ago. Following a period of rehabilitation at the Spinal Cord Injury Centre, Royal National Orthopaedic Hospital, Mr. X has made a remarkable recovery and now lives at home with a package of care.

Mr. X is tetraplegic, meaning he has no movement or sensation below the level of his injury. He is unable to move his torso, arms, hands, legs or feet.

Due to the nature of his injury, the nerve that activates Mr. X’s respiratory muscles has been severed and he is unable to breathe independently. He requires invasive mechanical ventilation via tracheotomy 24-hours a day. Mr. X uses a Nippy 3+ ventilator with settings fixed by the Respiratory Team. The Respiratory Team provides ongoing clinical support including regular monitoring of blood gases.

A second ventilator is always on site for back-up, and a generator is provided in case of mains electricity failure. Mr. X has not required oxygen therapy in the community.

Mr. X is unable to cough making the management of secretions imperative. He is at high risk of occlusion and consequent suffocation. Suction is performed by trained staff using a flexible suction catheter on an as-required basis. Mr. X is unable to alert staff to any difficulties and requires 1:1 skilled nursing care 24-hours a day.

Staff clean the tracheotomy tube several times each day to ensure it remains free of blood and mucus. The inner tube needs to be changed regularly and routine suction is required during changes (remove inner tube, suction, insert clean inner tube). This is a skilled procedure, requiring Mr. X to be disconnected from the ventilator for short periods.

Mr. X requires 24-hour skilled care, the nature of which is unusual outside an acute (hospital) environment. The use of invasive ventilation in a domiciliary setting requires expert staff, with the ability to troubleshoot issues with the equipment and the patient’s symptoms, and ongoing clinical support. The risk to Mr. X should complications occur are immediate and critical.

Mr. X presents with a ‘Priority ‘level of need as he is unable to breathe independently, requires invasive mechanical ventilation.

We hope this has given you a better understanding of the Breathing domain.  Don’t miss the rest of this series over the coming weeks.

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.

NHS Continuing Healthcare – Frequently Asked Questions

If you’re new to NHS Continuing Healthcare and are looking for advice on care funding, read these NHS Continuing Healthcare FAQs first. The information could save you paying for advice.

These are some of the most frequent kinds of questions families ask, and the information here can help you with your own care situation. Remember that Care To Be Different’s primary focus is NHS funding, not the whole range of local authority payments and benefits.

This NHS funding is called NHS Continuing Healthcare. Many families report being given false information by the health and social care authorities when a relative first needs full time care. As a result, many people end up being wrongly told to pay for care. NHS Continuing Healthcare funding covers 100% of the costs of receiving full time care either at home, in a care home or elsewhere. However the assessment process is not always straightforward and many people report having obstacles put in their way by the care authorities or are simply ‘overlooked’ for funding, whilst others are not even assessed at all. In some cases, many assessments are carried out incorrectly and health needs are ignored.

The following NHS Continuing Healthcare FAQs will give you a better understanding of your own position and what you can do to ensure your relative is properly assessed or reviewed:

NHS Continuing Healthcare FAQs

“I need to know what funding my mother may be entitled to?”

Specific funding entitlement will depend on each individual situation. However, if a person needs full-time care and has health needs, the first thing that should happen is an assessment for NHS Continuing Healthcare funding – not a financial assessment or means-test. NHS Continuing Healthcare is NHS funding and it covers the full cost of care for people who meet certain criteria. Those qualifying are said to have a ‘Primary Health Need’, i.e. their primary need in terms of care is a health need. Read the NHS Continuing Healthcare guidelines, particularly the Decision Support Tool, to find out what these criteria are.

“My father’s had a financial assessment and I need to know what he has to pay?”

“My mother has a house. Does she have to pay for her care?”

“We’ve been told my brother has to pay for his care because he has savings. Is this true?”

This is a vital point – and many families are given misleading information about paying for care. It is NOT a person’s money, home or assets that determine whether they have to pay for care; instead, it is their health and care needs. It doesn’t matter how much or how little money a person has – if they have healthcare needs and they meet certain criteria (as outlined above for NHS Continuing Healthcare), they do not have to pay. Almost always, the first question the authorities will ask a person is about the person’s house or their savings. However, the first question should be about their health and care needs.

“I can’t afford to pay for my husband’s care. What should I do?”

If a person is genuinely shown to have to pay for care, i.e. they are not eligible for NHS Continuing Healthcare funding, no family member or friend should be asked to pay for that care; it is only the person who needs care who should have to undergo a financial means-test. The health and social care authorities should not ask anyone else to disclose their own finances. In the case of a husband and wife or partners, this information from AgeUK may help: Paying for care if you have a partner.

“The NHS said they will only provide Continuing Healthcare funding in a nursing home, not a residential home. Is this right?”

It doesn’t matter whether a person is in a residential home, a nursing home or in their own home – NHS Continuing Healthcare funding is available to all individuals who need full-time care and who meet certain criteria in terms of their day-to-day healthcare needs. The type of home or care facility the person is in is irrelevant. The National Framework guidelines make this clear. Read more about Continuing Healthcare at home.

“What exactly is assessed in NHS Continuing Healthcare?”

Assessors look at health and care needs in 12 different care ‘domains’. These domains are different aspects of health and care, such as breathing, behaviour, cognition, continence, nutrition, mobility, skin integrity, drugs, etc. In stage one of the Checklist assessment process they look at 11 domains, and in stage two, at the full assessment, they add a 12th domain, ‘Other significant care needs’. You can find our more about these domains in the Checklist and the Decision Support Tool documents.

“The social worker insists that my mum will have to pay, because she has a home”

Sadly, many families are told that care funding depends only on a person’s money. This is incorrect and it leads to many thousands of people being wrongly charged for care (and having to sell their home or use life savings to pay for their care) – see above.

“We’ve been told my dad can have a weekly nursing care payment, but not full funding. Why is this?”

The smaller weekly payment is called Funded Nursing Care (FNC). FNC is paid to people in nursing homes who have some nursing needs and is provided by a registered nurse, and yet who are deemed not to meet the criteria for full NHS Continuing Healthcare funding. However, many families report that the FNC payment is often made as a matter of routine without any prior assessment having been carried out for NHS Continuing Healthcare. This is the wrong way round.

“The Continuing Healthcare assessor said that the Coughlan case no longer applies and that we can’t use it to argue our case. Is this true?”

No, the assessor is wrong. The Coughlan case is just as relevant now as it was in the Court of Appeal in 1999. These articles may help:

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

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

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

How relevant is the Coughlan Decision Today?

“We’ve been turned down for Continuing Healthcare and we want to appeal. But how do we actually word the appeal?”

There’s an awful lot involved in putting together a successful appeal, and it’s vitally important to pull together all relevant information about healthcare needs – and to do this with the NHS Continuing Healthcare eligibility criteria in mind. Make sure you’re familiar with the different stages of Continuing Healthcare assessment and appeal and also the National Framework assessment guidelines and funding eligibility criteria. Although this requires a lot of reading and preparatory work, it’s essential if you’re going to be able to make a fist of it and not be overwhelmed by the NHS’s appointed assessors.

In terms of wording an appeal, you need to pull together notes on everything that has been done incorrectly in the assessment process and particularly look at the way the eligibility criteria have been applied. This can be a very time-consuming process if you are going to do the job properly. Don’t forget that you are entitled to seek professional advocacy support at every stage of the assessment and appeal process if y9u need it. Unless you feel totally confident, it is certainly an area where expert help and advice can save you hours/weeks of preparation time, anxiety and stress, and maximise your chances of success. Getting the appeal wrong could cost your relative thousands of pounds a month in unnecessary care fees. There are links to more documents relating to appeals later in this article.

“What do I need to do to prepare for a Continuing Healthcare assessment?”

We could write volumes on this topic alone!

Firstly, you must be familiar with the NHS National Framework guidance and understand how the whole assessment process works. To help get you started, here’s just a small selection of blogs so that you can also learn what to expect. You can find many more on the subject by searching on our Care To Be Different website.

Getting through the Checklist assessment – avoid these common mistakes!

Preparing for the Multi-Disciplinary Team Assessment

Don’t let the Decision Support Tool become a ‘tick box’ exercise

You can also join the conversation on our Facebook page and learn from others who have shared their personal experiences of the assessment process.

“My father has been receiving Continuing Healthcare funding, but now the NHS is threatening to remove it. What can I do?”

CCGs are obligated to carry out reviews of CHC funding initially after 3 months, and thereafter, at least every 12 months. Such reviews are often an anxious time for families due to the fear that they could lead to funding being (wrongly) withdrawn. Good preparation for these reviews is essential. Beware! Annual Reviews can lead to CHC Funded Care being withdrawn. Be sure to provide information on how your relative’s healthcare needs have either stayed the same or increased (if that’s the case). If their needs are the same or greater than when CHC funding was first provided, the assessors will find it difficult to justify removing the funding. Due to the potential risk of an adverse outcome, families often seize this opportunity to seek the comfort of professional guidance and advocacy support.

“My mother has dementia and I don’t have Power of Attorney, and the authorities are refusing to let me be involved in her funding assessments or choice of care.”

This can be difficult. If your relative now lacks the mental capacity to make a Power of Attorney, you may want to apply for a Deputyship Order via the Court of Protection. Although this can take a while to do, and can be costly, it could save you more headaches in the future. Also read  our blog: Why you should consider making Lasting Power of Attorney or a Will

Alternatively, argue that you are entitled to act on your relative’s behalf in their  ‘best interests’. Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”.

“My brother has had a memory test and did very badly and we’ve been told this means the care authorities will now make all the decisions about his care. Is this right?”

This is a very common scenario, and we here from many families on this issue. Reports from families show that there is a huge lack of understanding about this amongst health and social care professionals. Many fail to understand the difference between a memory or cognitive test (such as an MMSE or an ACE-R test) and a Mental Capacity Assessment. They are two quite different things. In a nutshell, a Mental Capacity Assessment determines whether a person is able to make a specific decision about a specific thing at a specific time (such as deciding whether they want to go back home from hospital or go into a care home). Read more here: Tackling consent: Keeping control if your relative lacks mental capacity.

“My father is in hospital but needs full time care. He’s being told the hospital needs the bed and he’ll have to pay for a care home. What should we do?”

As a result of to the COVID pandemic, there still remains an ongoing need for the NHS to discharge patients from hospital as quickly as possible in order to free up beds. However, to help facilitate this and cover the cost, the Government has agreed to provide additional emergency COVID discharge funding for up to a maximum of 6 weeks following discharge from hospital.

So, if you relative is being discharged from hospital into a care or nursing home, and requires a new or additional package of care (eg to help with their recovery, support services, rehabilitation and reablement), they are entitled to receive free NHS funding for the first 6 weeks of their care, or until such later date as their long-term care needs have been assessed and the outcome is notified to them?

This emergency COVID discharge funding was due to end on 31st March 2021 but has recently been extended to the end of June 2021. Thereafter, between July and September 2021, the 6 week post-discharge funding will reduce to 4 weeks. We anticipate that it will then be reviewed again in due course towards September this year.

The follow articles will help:

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

Why 31st March 2021 Is A Date To Look Out For?

Things You Need To Check Before Your Relative Is Discharged From Hospital

“My wife has to be turned regularly, she’s doubly incontinent and has to be fed. Surely she’ll be eligible for NHS Continuing Healthcare funding?”

The only way to know if a person is eligible for this is for them to be assessed for NHS Continuing Healthcare. This funding is not dependent on any specific diagnosis, but instead is based on a person’s day-to-day care needs – the whole picture of need.

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

“How do I get the ball rolling for an NHS Continuing Healthcare assessment?”

Read these articles to give you a good start:

Getting the NHS Continuing Healthcare assessment process started.

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Understanding the Checklist Assessment

“The NHS assessor said they only provide Continuing Healthcare funding at specific care homes, and we’ll have to move our mother if we want to have any chance of funding.”

This is quite wrong. As long as the care home is able to look after a person, there is generally no reason why NHS Continuing Healthcare funding can’t be paid – assuming, of course, that they meet the eligibility criteria in terms of their healthcare needs. We know of people in top-end care homes who receive fully-funded NHS Continuing Healthcare.

“My sister is in a nursing home and she had an assessment for Continuing Healthcare but didn’t get through. She’s been told she’ll just have to pay the full cost. Is this right?”

Even if a person isn’t eligible for full NHS Continuing Healthcare funding, they may be able to access a weekly nursing care payment-  Funded Nursing Care (FNC) – if they’re in a nursing home. This article outlines more about Funded Nursing Care. A person may also be entitled to Attendance Allowance and other benefits.

“My father got through the Checklist assessment for Continuing Healthcare, so surely he should now receive full funding?”

The Checklist is just the first stage. If a person gets through this, they go on to have a full assessment involving an MDT. Read more about the MDT assessment and what to expect.

“The assessor told us we were not allowed to speak during the assessment, and could not be present for most of it. Is that correct?”

No. Families should be involved and their input should be taken into account. You are entitled to have your say and The National Framework guidelines make this clear.

“I’ve been waiting ages for a decision on my retrospective care fees claim, and I’ve just heard that it’s been thrown out. What can I do?”

Make sure that it’s been reviewed properly and be sure to lodge any appeal within the 6 month time limit stipulated. These tips on retrospective claims will help.

For further reading around appeals, take a look at these helpful articles:

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

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

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

“We’ve only just heard about Continuing Healthcare funding and yet our mother has been in care for several years. What should we do?”

If your relative is already paying care fees, and yet has never been assessed for NHS Continuing Healthcare funding, ask for a Checklist assessment as a matter of urgency. Also ask the NHS Continuing Healthcare team at the local NHS why this hasn’t happened before. You can also ask the care home manager, care provider or a social worker why this hasn’t been done before. In terms of making a retrospective claim, you can generally now claim only as far back as 1st April 2012. However, if you were never told about Continuing Healthcare – or you were not told how to appeal after the funding decision last time – you may have grounds to claim further back. You could argue that the care authorities failed in their duty to provide accurate information. Equally, if you were deliberately misled at the time about care funding, the health and social care employees you dealt with may well have been negligent in their professional duty. Plus, the local authority may have broken the law when it effectively took responsibility for care and asked the person in care to pay (see above).

“I asked for a Continuing Healthcare assessment for my mother but was told it’s not worth it because she wouldn’t get it. Is there anything I can do?”

This is a very common problem, and many families are told ‘not to bother’. However, the ONLY way to know if a person will be eligible for NHS Continuing Healthcare is for them to have an assessment. It’s as simple as that. Here are just some of the things families are told to put them off having a Continuing Healthcare assessment.

“We’ve been told it’s very difficult to get Continuing Healthcare and that the scores our dad needs are almost unattainable. Is it worth it?”

We know of people who have succeeded in getting full NHS Continuing Healthcare funding with relatively low assessment scores, and others with significant needs who have to battle all the way. It can be a postcode lottery. However, the Continuing Healthcare guidelines cover the whole of England, and all assessors should abide by them.

“The care home manager told me that there are people worse than my mum in the care home and they don’t get any funding – so neither will my mum.”

Again, sadly, this is very typical. A Continuing Healthcare assessment is not a comparative exercise. It doesn’t matter what anyone else’s care needs are. If a person has healthcare needs, they should be assessed fairly and robustly, regardless.

“I don’t know if my grandmother has been previously assessed for NHS Continuing Healthcare. How can I find out?”

Contact the NHS Continuing Healthcare team at the local NHS Clinical Commissioning Group and ask them to provide you with paperwork to show when, if ever, your relative was assessed. If you contact the main switchboard of the local CCG and you’re told they don’t have a Continuing Healthcare department, keep persevering! It’s not unusual for main reception staff not to know about Continuing Healthcare. Every local CCG has a Continuing Healthcare team, you just have to have patience to get through to the right people.

“We’ve been asked to pay top-up fees, but this is making life very difficult for us. Do we have to pay them?”

This is a very common question from families, and top-up fees are often controversial. This article will help: Are You Paying Top-Up Fees Unnecessarily?

“The care home doesn’t seem to want to help us get a Continuing Healthcare assessment done. Is there any reason for this?”

It could be due to various things, but unfortunately, sometimes there is also a financial conflict of interest for care homes; they receive more money from residents who pay for themselves (‘self funders’) than they do from the NHS through NHS Continuing Healthcare funding. We’ve heard from some families that care home staff and managers have tried to put people off applying and that staff can be less than helpful in the actual assessment process. Care staff may also not know anything about Continuing Healthcare. To succeed with your relative’s assessment or appeal, make sure the daily care notes are up to date.

“I’ve discovered that my mother was previously assessed (and turned down) for NHS Continuing Healthcare, but I knew nothing about it. What can I do?”

Write to the Continuing Healthcare Department at the local NHS Clinical Commissioning Group with a certified copy of your Power of Attorney (or other form of authority) and request copies of all NHS Continuing Healthcare assessments carried out to date with the full rationale for the funding decisions. Also, state that these assessments should have been carried out with your full knowledge and involvement. You can ask for the assessments to be done again.

‘How To Get The NHS To Pay For Care’ – step-by-step book

Many people find this book (available as an e-book or paperback version) a cost-effective starting point: How To Get The NHS To Pay For Care. It takes you step-by-step through the whole NHS Continuing Healthcare process, right from the start, including how to approach the NHS, what should (and shouldn’t) happen, the pitfalls to avoid, what to do and say before, during and after an assessment, what’s right and what’s not, how to challenge decisions, how to pull apart the NHS’s assessment notes, etc. It gives you a firm understanding of the process and lots of useful and practical information. You’ll find more information about the book here.

We hope these NHS Continuing Healthcare FAQs have answered a lot of your questions. If you still need one-to-one advice though for your specific situation, contact our different Advice helplines and speak to a specialist nurse advisor or case handler; or 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.

Here are 5 common myths about Continuing Healthcare Funding:

1. ‘I have been told that You have to be at death’s door to receive it’

We wish we had a pound for every time someone has said this to us! It is not true that you have to be but, of course, if you are, then you are likely to qualify for Fast Track funding if you are not expected to live longer than 12 weeks. However, there are many thousands of people who are in receipt of CHC funding and then go on to receive it for several years.

2. ‘I have been told that there is no point in applying for this funding because the NHS in my area are so short of money that they don’t ever grant the funding to anyone’

This is total nonsense! If you qualify for NHS CHC funding, then the NHS is legally obliged to provide it – ‘free at the point of delivery’ in accordance with the NHS Constitution. Don’t be fobbed off.

3. ‘I have been told that there is no point even being assessed for this funding because my father will never qualify for it’

Nonsense – if you are being discharged from hospital into long term care, then you are entitled to be assessed for CHC funding, and at least the first stage of the process – the Checklist assessment – should be carried out once discharged from hospital. You are, of course, entitled to request a CHC assessment even if you are transferring into long-term care from your own home.

4. ‘You have to be in a Nursing Home to qualify’

The setting of the care is irrelevant to whether or not you qualify for CHC funding. It is true that the likelihood of qualifying is higher if you are in a nursing home (rather than a residential home) by virtue of the fact that you have higher levels of need that require the input of a nurse. But it is not a bar to qualifying if you are not in a nursing home.

5. Are you still able to apply for NHS CHC Funding if you have savings and own a house?

Yes! This is one of the most commonly held misapprehensions about NHS Continuing Healthcare Funding. The assessment of eligibility is based on your health care needs and the care which is required to manage those needs and has nothing to do with your personal wealth or finances. A financial assessment should only be requested by the local authority once the issue of eligibility for NHS Continuing Healthcare funding has been considered.