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TIPS on assessing ‘Behaviour’ when completing the Decision Support Tool for CHC Funding

Formal assessment of an individual’s eligibility for NHS Continuing Healthcare Funding (CHC) is conducted by an NHS Multi-Disciplinary Team using the Decision Support Tool (DST).

The DST is a screening tool used by Multi-Disciplinary Team (MDT) assessors to record assessed levels of healthcare needs across all 12 Care Domains in one document – based on the frequency and/or severity of the care requirements in each Care Domain (namely: Breathing, Nutrition, Continence, Skin, Mobility, Communication, Physical/Emotional Needs, Cognition, Behaviour, Drugs/Medication /Symptom Control, Altered State of Consciousness and Other).

Focusing on whether an individual is displaying challenging behaviour can be a pivotal point in determining their eligibility for CHC.

Challenging behaviour can impact upon many Care Domains and this should not be forgotten when completing an assessment for eligibility.

Often the NHS Clinical Commissioning Group’s assessor will compartmentalise the needs in Behaviour and will fail to cross-reference them with the other Care Domains. This can have a prejudicial effect on the whole case. So, make sure that the details of behaviour are well recorded in the Behaviour section on the DST and also in the four Key Characteristics.

In the Behaviour section (section 9) of the DST it states;

‘Behaviour: Human behaviour is complex, hard to categorise, and may be difficult to manage. Challenging behaviour may be caused by a wide range of factors including extreme frustration associated with communication difficulties or fluctuations in mental state.

Challenging behaviour in this domain includes but is not limited to:

  • aggression, violence or passive non-aggressive behaviour
  • severe disinhibition
  • intractable noisiness or restlessness
  • resistance to necessary care and treatment (but not including situations where an individual makes a capacitated choice not to accept a particular form of care or treatment offered.)
  • severe fluctuations in mental state
  • inappropriate interference with others
  • identified high risk of suicide’.

The DST also gives the following descriptions against the different levels of need that can be selected:

Description  Level of need
No evidence of ‘challenging’ behaviour.  No needs
Some incidents of ‘challenging’ behaviour. A risk assessment indicates that the behaviour does not pose a risk to self, others or property or create a barrier to intervention. The individual is compliant with all aspects of their care.  Low
‘Challenging’ behaviour that follows a predictable pattern. The risk assessment indicates a pattern of behaviour that can be managed by skilled carers or care workers who are able to maintain a level of behaviour that does not pose a risk to self, others or property. The individual is nearly always compliant with care.  Moderate
’Challenging’ behaviour of type and/or frequency that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.  High
‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.   Severe
‘Challenging’ behaviour of a severity and/or frequency and/or unpredictability that presents an immediate and serious risk to self, others or property. The risks are so serious that they require access to an immediate and skilled response at all times for safe care.   Priority

To select the correct level of need, there needs to be a close study of all the aspects of the behaviour. There needs to be a degree of clinical judgment to consider the impact of the behaviour on the individual, on the people providing their care, and on the people sharing the care setting.

Firstly, the specific detail of the behaviour needs to be recorded. If there is a list of incidents recorded with the date, duration, what happened and what action was needed, it is imperative that such matters are noted on the DST.

TIP: If your relative is living at home, you could start keeping a record of any incidents on a list, spreadsheet or in a diary. This will be helpful when completing the DST. If your relative is living in a care setting, hospital or rehabilitation type setting, the care provider will likely start recording incidents on purpose printed behaviour recording sheets (sometimes referred to as ABC’s  i.e. an Antecedent (what happens before the behaviour i.e. what might have triggered it, a Behaviour and a Consequence). You can ask the manager of the care setting to do this if they are not doing it already.

TIP: It is a good idea to regularly check that the care records are up to date and accurately reflect details of behaviour.

Do Care Homes Play A Part In Preventing Successful Outcomes For CHC Funding?

Here are some key details that ought to be noted in the care records and which will be important to record on the DST:

What is actually happening?

  • Is the individual just being verbally aggressive or are they being physically aggressive, too, and if so, what are they doing? An individual who is feebly pushing a carer away will not be as difficult to care for as another who is lashing out and directing punches at carers or using a weapon (such as a walking stick or handbag).
  • Is the individual doing things that could attract negative behaviour from other users of the care service? For example, an individual that invades the personal space of other residents in a care home or shouts in their faces. These actions could create risks for the person displaying the behaviour, particularly where there are other residents with cognitive problems that do not understand what is happening, as they can retaliate, causing risks to safety.

How often does the behaviour happen?

  • Is it daily, weekly or monthly or less frequent? Behaviour can be sporadic, frequent or occasional.

How long does each incident last?

  • For example, is it an instant response that ends quickly, like lashing out when care is given? Or is it longer lasting, for example, an individual that is constantly being noisy or constantly being aggressive?
  • It is relevant to consider how often carers need to manage the behaviour and how much of their time it takes up.

Is there a trigger to the behaviour?

  • If there is, it can make it easier for carers to anticipate or avoid.
  • If there are no identifiable triggers, conversely, this can make it harder to give care safely.
  • Consider what led to the behaviour happening. Is it likely that it will keep happening?
  • What measures have been taken or can be taken to prevent that trigger?

How is the behaviour managed?

  • What do carers need to do to calm the situation down? For example, do they have to isolate the person?
  • Do they need to restrain the individual? Are there any other special techniques needed?
  • Does the individual need to be given medication to manage their behaviour – and does this need to be overseen by a specialist?
  • How many carers need to be called to manage the behaviour? For example, does it need just one person to guide the individual away from a situation, or are two or three people needed to resolve it?
  • Is there anyone with specialist training involved in managing their behaviour? For example, a psychiatrist or other member of a mental health team.

How much risk is involved in the behaviour?

  • Is it likely that the individual might injure themselves or others?
  • Have they injured themselves?
  • Could they injure someone else?
  • How strong are they?
  • Are they able to move around or are they confined to a chair or bed (this can limit the risks to others)?

Other considerations could include:

  • Is there a past history of very aggressive behaviour, and if so, is the behaviour still happening in a similar form?
  • Has the individual caused previous injury to others or themselves due to the behaviour?
  • Have there been lots of types of medication tried? Has the medication dose been changed a lot? Does the medication cause any side effects?
  • Is the behaviour happening at night when there are few carers around to manage it?
  • Are there any reports from specialists about the behaviour?
  • Does the behaviour impact on other areas of care, for example does it make it harder to provide continence care?
  • How does the behaviour affect the person’s psychological and emotional needs?
  • It is important to reflect on the incidents of behaviour also in the Psychological and Emotional Needs section, as often, an individual displaying challenging behaviour will be anxious, distressed or agitated at the same time.

It would be expected that the Multi-Disciplinary Team completing the DST will take into account all the appropriate factors, including the above, in order to arrive at the correct level of assessed need.

It would normally be expected that physical aggression would be given a higher level of need than verbal aggression. Similarly, frequently displayed behaviour would be given a higher level of need than infrequent behaviours.

Essentially, it is important to consider the risk versus the frequency. However, one very aggressive episode with serious consequences could be enough to warrant a ‘Severe’ or ‘Priority’ level of need in the DST.

Summary:

As can be seen, there are lots of factors to consider and it is important to understand the clinical opinion of the appointed assessors. The DST should record all the considerations of the MDT so that family members and other people reading the DST can understand why one level of need was chosen over another.

The needs reflected in the Behaviour section should be reflected also in the four Key Characteristics and should examine how the behaviour impacts on other areas of care.

It is a tricky subject and can give rise to differences of opinion between one clinician and another, as well as family members, care givers and advocates. Getting the right information and detail is key.

For more reading about MDTs and assessments, here’s a selection of previous blogs to help you…

Can The MDT Panel Refuse To Proceed If I Have An Advocate

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

Preparation, Preparation, Preparation! Never Take MDT Outcomes For Granted

If you need help with an MDT assessment, appeal or advocacy support don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.

Plus, don’t forget, there is plenty of free information and resources to help you on our Care To Be Different website.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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Your 15 Step Guide to Understanding NHS England IRP Decisions

NHS England IRP Decision

Has your relative been rejected (whether in full or part) for NHS Continuing Healthcare in the last 6 months? If so, have you been told that you can appeal to an Independent Review Panel?

Often the Care Commissioning Group (CCG) will review their own decisions internally, this will be called something like a ‘Local Panel’ or an ‘Internal Review’. CCGs have different arrangements and use different terms for this process. It is usually done ‘in house’, which means that the team holding the budget is making the decision.

You should be notified that you have a right to have an independent review of the decision. This right should be noted on the letter that you get from the CCG telling you that your application for CHC funding has not been successful (whether that be in full or part).

You must lodge the appeal with NHS England within 6 months of receiving the final decision letter rejecting CHC funding.

Don’t forget to write to the CCG as well, telling them that you don’t accept their decision and are appealing to NHS England.

Once you have asked for an appeal, the matter will move out of the CCG’s internal processes. It will it no longer be the case of the CCG ‘marking their own homework’, as the appeal will be dealt with by an independent team at NHS England – an Independent Review Panel  (‘IRP’).

In practical terms, think of the IRP as your last chance to secure a successful outcome for CHC Funding once you have exhausted the CCG’s internal appeal and complaint’s process.

The Independent Review Panel’s terms of reference

The way in which the IRP works is governed by The NHS Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 and by the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018).

The IRP has the responsibility of reviewing (1) the eligibility decision reached by a CCG and (2) the procedure it followed in reaching its decision on an individual’s eligibility for NHS Continuing Healthcare. The IRP can change the eligibility recommendation. The IRP can also make comments about the process that has been undertaken by the CCG.

Who attends the IRP:

The IRP usually consists of the following:

The Panel – consisting of

  1. Independent Chair
  2. Local Authority representative
  3. NHS representative

In addition to the Panel, in attendance may be:

  • Clinical adviser (sometimes the NHS representative will also be the clinical adviser)
  • Family members
  • Family advocate – can be a lawyer, nurse etc.
  • CCG representative
  • NHS England note taker
  • And an observer (in some cases)

Following on from our recent blog: Only 2 Hours for an appeal to Independent Review Panel! You will know that IRPs are now conducted remotely (over Microsoft Teams) and last only 2 hours. So, careful and considered preparation in advance of the IRP is vital, given such a short timescale to now make all your points at the appeal.

After your 2 hours are up, and you have been released from the meeting, the IRP panel members will continue and deliberate the evidence in order to produce their decision outcome report with their findings and recommendations.

Their report will contain several sections, including the following:

1. The Independent Review Panel’s recommendations:

Effectively, a brief a summary of IRP’s finding and recommendations as to matters they have considered, and which prompted your appeal to NHS England in the first place. It will set out whether the CCG’s prior decision was unsound (ie wrong!), if the applicant has been successful and is eligible for CHC Funding. The IRP may also comment if the CCG needs to improve its policy on assessments and reviews in order to ensure full compliance with the National Framework for NHS CHC – which should, of course, be at the heart of the whole process.

2. Does the individual have a primary health need?

An individual is eligible for NHS Continuing Healthcare if they have a “primary health need”. This is when it can be said that the main aspects of the care they require are focussed on addressing and/or preventing health needs. It is not about the reason why an individual requires care or support, and it is not based on their diagnosis (e.g. dementia). It is about the level and type of their overall actual day-today care needs taken in their totality.

In considering whether an individual has a primary health need, the IRP first needs to consider the evidence of the individual’s needs in the 12 separate care domains listed in the Decision Support Tool associated with the National Framework.

The Decision Support Tool does not, however, directly determine eligibility; the evidence collated merely helps to inform the IRP’s consideration of whether an individual has a primary health need, looking at the totality of need using the four key characteristics of nature, intensity, complexity and unpredictability.

In all cases, the overall need, interactions between needs in different care domains, and the evidence from risk assessments, should be taken into account in deciding whether a recommendation of eligibility for NHS Continuing Healthcare should be made.

The decision whether someone has a primary health need must be based on what the evidence indicates about the nature and/or complexity and/or intensity and/or unpredictability of the individual’s needs.

The IRP must also consider whether or not, taken as a whole, the nursing or other health services required by the individual were:

  • more than incidental or ancillary to the provision of accommodation which local authority social services are under a duty to provide; and
  • of a nature beyond which a local authority whose primary responsibility is to provide social services could be expected to provide.

If they were, then this indicates that the individual had a primary health need.

For more information on the subject take a look at these helpful blogs:

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

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

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

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

3. The Background to the applicant’s case:

The IRP will usually set out a brief history of the individual’s medical condition and the reason why they moved into a care facility, together with details of any assessments or reviews undertaken for CHC, outcomes obtained as to periods of eligibility and/or ineligibility for CHC Funding, and the basis of those matters for consideration at IRP.

4. Reasons for the request for Independent Review

The outcome report will set out why family requested an Independent Review and will give their reasons for challenging the CCG’s decision to reject CHC Funding. For example, these reasons might include:

  1. The fact that the CCG had failed to take properly into account their relative’s needs and had misapplied the Primary Health Need test;
  2. The CCG had given no reason about what had significantly changed or improved in their relative’s needs to make them ineligible for CHC funding;
  3. A number of process issues that were not followed (including lack of transparency) leading the family to feel that a thorough, fair and robust assessment had not taken place.

5. Evidence considered by the IRP

The IRP will list the evidence reviewed and considered when making its decision and recommendations.

6. The IRP’s view of the applicant’s levels of need under the care domains in the Decision Support Tool

The IRP will set out the 12 care domains and summarise the CCG’s, the family’s and IRP’s suggested level of need in each care domain and discuss the various needs when reaching its conclusion. E.G. ‘No Needs’, ‘Low’, ‘Moderate’, ‘High’’, Severe’ or ‘Priority’ levels of need.

For more information about levels of need for each care domain, we highly recommend that you read our informative blogs in this 12-part series (more to follow soon!). The latest below contains links to all previous blogs in the series.

Get Help Breaking Down the Decision Support Tool: Psychological & Emotional Needs

7. Levels of need agreed by the IRP

There will be a table to give an overview of the levels of need selected  in each care domain, listing  a total of how many ‘Priority’, ‘Severe’, ‘’High, ‘Moderate’, ‘Low’ or ‘No needs there are.

8. The IRP’s consideration of the four key characteristics

Of course, those familiar with CHC Funding will know that it’s not just about the needs across the 12 care domains that determine eligibility for CHC, but applying the 4 key characteristics (nature, intensity, complexity and unpredictability) to understand the totality of need.

9. The Family’s submission

The family (and their representatives) will be given their chance to have their say. After all, the individual is supposed to be at the heart of the process.

The IRP should reflect again on the family’s submission to check that all the relevant points have been covered, that they have considered the 12 care domains using information available in conjunction with the four key characteristics and have given an explanation about how each was assessed and state whether these amounted to a Primary Health Need.

10. The IRP’s application of the “incidental and ancillary” test in the applicant’s case

The IRP should consider whether, taken as a whole, the nursing or other health services required by the individual were (1) more than incidental or ancillary to the provision of accommodation which local authority social services are under a duty to provide and (2) were of a nature beyond which a local authority, whose primary responsibility is to provide social services, could be expected to provide.

11. The IRP’s view on the primary health need test

Taking into consideration all of the evidence of the applicant’s needs and the nature, intensity, complexity and unpredictability of those needs, the IRP should then conclude whether the individual did have a primary health need.

12. Further comments (if any)

As part of their deliberations, the IRP should note any additional comments made by the family, for example, in terms of high levels of support provided to their relative, such as visiting daily to provide direct support and supplement care due to staff shortages, help with medication, getting their relative ready for bed, being ‘on-call’ when the care home struggled to manage their relative’s behaviour etc.

13. The IRP’s recommendation on eligibility

The IRP will conclude whether the individual did have a primary health need and was therefore recommended eligible for NHS Continuing Healthcare or not. The IRP can only make a ‘recommendation’ to the CCG about eligibility, but in practice, the CCG generally accepts the findings of the IRP.

14. Procedural issues raised by applicant

The IRP will summarise any concerns the family have raised about the dispute resolution process; the previous appeal to the CCG’s Local Resolution Panel; any lack of transparency or lack of clear explanation or rationale as to how the disputed DST had been resolved; any failure to invite the family to participate in meetings; under-reporting of the clinical evidence discussed; whether the CCG’s general approach with applicant’s family had been dismissive and could even be perceived as dishonest etc.

15. The IRP’s recommendations on procedural issues

Having regard to the issues raised above concerning the CCG’s procedure, the IRP can make any recommendations as it feels fit, such as: the CCG reviews its policy and procedure for any stage of the CHC process from review (and timings), the DST, the dispute resolution and/or local appeal to ensure that clear information is made available to families to guide them through the CHC process, letting them know what to expect at each stage; to ensure the National Framework for Continuing Healthcare 2018 is at the heart of all process and that CHC process is clear, well documented with signed evidence made available at each stage showing the decision made and who made it.

But remember, just because the CCG got parts of the process wrong, does not necessarily meant that the eligibility decision is wrong.

Attending an IRP can be a daunting experience given the high stakes and number of people who may be in attendance (even if only ‘virtual’, as these days IRPs are held online). This is an area where we would recommend you seek professional help and advocacy to help you to navigate this complex area. If you need help, or want to discuss your situation, contact us via our website.

For more information about appeals, read this selection of blogs below:

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

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

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

Preparation, Preparation, Preparation! Never Take MDT Outcomes For Granted

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Only 2 Hours for an appeal to Independent Review Panel!

If your local NHS Clinical Commissioning Group has rejected your application for NHS Continuing Healthcare funding, you always have the option to appeal to an NHS England Independent Review Panel (IRP).

A few years ago, if you attended an Independent Review Panel (IRP), you might have expected to be there for – well, as long as it took to deal with your complaints and to give you the opportunity to discuss all the needs of your family member. This would be a face-to-face meeting with a representative from the CCG, the panel members, and a clinical adviser, you, and possibly your advocate.

Everyone had a hard copy of the document file, and the IRP members could discuss the file with you whilst everyone turned to the relevant pages together.

Everything changed with the onset of COVID-19. The NHS had a period of about 6 months where no IRPs were held. When they were eventually up and running again, IRPs were all done online (remotely) – the indication is that this way of working will continue indefinitely going forward, even with the lifting of COVID-19 restrictions.

So now, if you are invited to an IRP, you will receive your documents, likely via secure email, and you will be invited to a Microsoft Teams Meeting, online. Some people find this daunting, and although we believe that face-to-face meetings are better for families, the good thing about MS Teams is that you can take part in the IRP from the comfort of your own home. And, because more meetings can be held, it has enabled the NHS to clear a long backlog of cases.

As a result, you will get to attend an IRP within a reasonable time frame, possibly 3-6 months, rather than waiting 18 months to 2 years, which was the norm in the past.

If you have never used MS Teams before, the NHS will send you instructions, and you can always ask for the help of a friend or family member.

The NHS has also started to restrict the amount of time that IRPs run, now aiming to complete within 2 hours.  This is a tall order given there are 12 areas of need (care domains) to discuss, then there are the 4 key characteristics, and also any complaints that you might have about the process so far.  That’s a lot to cram into just 2 hours!

In order to use your time wisely, we would recommend that you think carefully about how long you spend talking about each item.

So here are some handy hints:

  • Set out your complaints and everything that you want to say in writing in advance of the meeting and send this to the CCG or NHS England as requested – you should be asked to do this as a matter of course. You should make sure that you say which levels of need you disagree with and why – and try to back this up with examples from the clinical evidence if you can. If you have an advocate such as a solicitor, they will likely send in the written submissions on your behalf some weeks in advance of the IRP.
  • If you have not got 2 computer screens, it can be difficult to look at the emailed IRP documents at the same time as taking part in the meeting. You might want to print key documents or key pages to help you refer to them during the IRP, or make a written note of the page number, dates and content, ready to be able to quote to the IRP members.
  • During the meeting, focus more on the levels of need and the 4 key characteristics than the process, as this is where you can get the eligibility decision changed. Any complaints about the process will more than likely just be acknowledged by the IRP and the CCG told to get it right next time. Whereas changes to the levels of need and 4 key characteristics are more likely to lead to changes to the decision to award CHC funding.
  • Spend more time discussing needs that are Moderate, High and Severe, than on needs that are Low – but don’t forget that even Low needs, particularly if they take up a lot of time in terms of care needed, can change the decision from ineligible to eligible!
  • There will be some levels of need that you have agreed with, and others that you haven’t. Spend more time discussing the levels of need that you disagree with, but don’t ignore levels of need that you do agree with, if key care details have been missed or underestimated. For example, there might be practical considerations around the care needs that have not been taken into account; such as, in ‘Mobility,’ the original decision might not have considered the frequency or times of any falls. Falls might have been happening frequently at night when less carers were available to assist. Or, the original decision might not have looked at needs that overlapped. For example, there might be a Moderate or High in ‘Behaviour’, impacting on care needs in other areas of needs (domains), such as ‘Continence’ care, making it more difficult or more time-consuming for carers to provide the care in those other areas of need – you should discuss or emphasise these links.
  • The 4 key characteristics – this is perhaps the most difficult part of the IRP for families to understand. It is the part of the IRP where you need to look at all the needs and how they interact with each other and then consider how this affects the Nature, Intensity, Complexity and Unpredictability of the needs. This comes at the end of the IRP, when you might be feeling a bit tired, so our tip is to have your points written out in advance, and submit them to the IRP in advance (you should be requested to do so by the CCG or NHS England), also have them printed out and in front of you during the IRP meeting; use a highlighter pen to pick out the most important points before the IRP starts, and use your highlights to help you to summarise concisely.
  • During the IRP, keep your eye on the time and try to apportion your time well – aim to have no longer than 20 minutes at the start to discuss any complaints you have about the process. When discussing the areas of need (domains) aim for about 5-7 minutes per area of need – increase this slightly for higher-level needs and reduce it slightly for lower-level needs. Don’t forget there are 12 areas of need, so the time soon mounts! You need to leave time for the IRP members to ask you questions on each of the areas of need. At the end of the IRP, take about 20 minutes to discuss the 4 key characteristics and for the NHS to make their closing statements.
  • The Chair of the IPR will likely set the pace for the meeting, but it is worth keeping an eye on the time yourself, so you don’t have to rush any of your points. Some IRP Chairs will let the time overrun, if needed.
  • The MS Teams meeting will end for you and the CCG’s representative, but the rest of the IRP members will carry on discussing the case after your 2 hours is up, in order to make their decisions and conclusions.
  • Make good use of your time in the IRP and maximise your chances of being successful!

Conclusion

Good preparation and use of time is paramount with such dramatically reduced appeal hearing slots.

Don’t get side-tracked into discussing matters which are irrelevant, waste precious time and could even undermine your case.

Focus on the good points you want to make to support your case.

As the IRP really is considered the last realistic chance to get valuable CHC funding awarded, many families use the opportunity to seek professional advocacy support to ensure that their appeal has the best chance of success. A good advocate will analyse the evidence, prepare detailed written appeal submissions and take the stress and strain off your shoulders. If you need legal help, visit our 1-2-1 page or get in contact via our website.

For additional reading around the subject, look at these helpful blogs:

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

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

Preparation, Preparation, Preparation! Never Take MDT Outcomes For Granted

June’s feature on flawed CHC assessments and the importance of good record keeping

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

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

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

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

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Channel 4 News Spotlights The Complexities And Frustrations Of Claiming NHS CHC Funding

Frustration Just Ahead Green Road Sign

There was an excellent item featured on Channel 4 News on 11th October 2021, which highlighted the shortcomings of the complex NHS Continuing Healthcare process (‘CHC’).

In case you missed it, here’s our transcript of the programme presented by Victoria Macdonald, Health and Social Care Editor entitled: “Elderly people with complex health needs being denied free care.”

“Macdonald: The continuing healthcare scheme was set up to allow people with long–term complex health need to qualify for free care, funded by NHS England. But, because of the strict assessment rules, tens of thousands of people who apply each year are turned down.

Macdonald: 89-year-old, Sheila Kidd is unable to feed herself, is bed bound, doubly incontinent, can’t communicate, becomes anxious and distressed. The once vibrant, infant schoolteacher seen here in better times, has dementia and is in a care home.

Her daughter: Pretty much everything in my mum’s life has to be managed and done by other people, apart from breathing.

Funding withdrawn

Macdonald: And for nearly 2 ½ years, Mrs Kidd’s needs were considered so great she was given Continuing Healthcare or CHC funding – a recognition that she needed more than just social care. Now, it has been taken off her.

Daughter: That range of need should mean that somebody is eligible for healthcare, but the bar is high, and the way they make that bar high is by saying, yes, those needs have to have the complexity and intensity and/or the unpredictability in order for it to be defined as a health need.

Macdonald: And the bar would indeed appear to be set high. Those who are days or weeks from dying are assessed on a fast-track system , anybody else, even if they appear as helpless as Mrs Kidd – it is a standard assessment.

For the first quarter of 2021/22 [April to June], the total number of people assessed for NHS CHC was 36,866 – nearly 23,000 [22,874] were via the fast track and they were all successful [ie all awarded funding]; but of the nearly 14,000 [13,992] via the standard assessment route, only 3,424 were awarded funding.

For all the talk recently about reforming the NHS and social care systems, making them more joined up, CHC funding falls into a grey area between the two, and it’s highly complex – both to apply for, and to appeal against, when funding has been removed or denied; and then there’s the postcode lottery  –  in some parts of the country you are 17 times more likely to be awarded CHC funding than in other parts of the country.

“Best kept secret in the NHS”

Admiral Mathias: Well, my involvement in CHC goes back to my mother’s case and she had very, very severe dementia and she was in a nursing home before she died for a total of 4 years and I’d never heard of CHC funding, referred to as the best kept secret in the NHS.

Macdonald: Retired rear Admiral Philip Matthias fought the system and won £200,000 back pay for his mother’s care; now he is waiting for an appeal allowing a judicial review into the way decisions are made across England.

Admiral Mathias: I have experience of operating a high level in the Ministry of Defence. I’ve got very good analytical skills. I’m a confident type person, and if I struggled over 2 years to win my mother’s case, I just thought how on earth can these tens of thousands of people, ordinary people, who are busy, how do they manage? And, of course, they don’t. So, my motivation was entirely based upon outrage in terms of the injustice and unlawfulness of the system.

Macdonald: Clinical Commissioning Groups are responsible for the funding and would dispute that they act unlawfully. But this is what one former assessor has now told us.

“I didn’t feel I could be part of that”

CCG Assessor: For me, it felt like my job was to prove someone didn’t warrant getting CHC… I had to find the reasons someone wasn’t meeting the criteria… I have my professional ethics, and I would look at a system I felt was letting people down… In the end I didn’t feel I could be a part of that.

Dan Harbour: We need to stand back and look at the national data set and ask ourselves why there are more people being assessed now than there have been and yet there are fewer people eligible today than there were just a few years ago.

Macdonald: Mrs Kidd’s family are now appealing the decision to remove her funding, although the Clinical Commissioning Group which assessed her, said: Funding is granted according to a nationally set criteria, which looks at a person’s current needs, rather than a long-term diagnosis or health condition. And NHS England said the criteria was to ensure funding decisions were consistent across the country. A statement disputed by many of the families now seeking help.”

Here’s a link to the actual news item:

https://www.channel4.com/news/elderly-people-with-complex-health-needs-being-denied-free-care

Our comment:

Firstly, a big ‘thank you’ to Channel 4 for raising more awareness of the complex issues surrounding CHC funding.

Sadly, the Channel 4 item is not news to us! Our numerous daily enquirers, contributors to our Facebook page and those who kindly post replies to our blogs, all convey a similar theme. Sheer frustration at the complexity of the CHC assessment system. A sense of injustice for those clearly entitled to CHC who are being refused. And the inconsistency of approach adopted by Clinical Commissioning Groups throughout England and Wales.

Many families are being let down by a system that is supposed to support them in their time of need. Instead, if CHC is turned down or existing funding is withdrawn, many thousands of individuals may well end up paying for their own care quite unnecessarily and even having to sell their home to pay for it.

Channel 4 item correctly states that the bar to accessing CHC funding is set very high. It is not just about a specific condition or diagnosis. It is also about how those healthcare needs are managed on a daily basis.

We know just how difficult, complex and frustrating the whole CHC assessment and appeal process is!

Remember

You don’t have to fight this battle alone.

If you need help, call us now on 0161 979 0430 or email your enquiry to enquiries@caretobedifferent.co.uk

If you want to speak to a specialist CHC nurse or just get some general advice about any stage of your case, visit our Advice Line Services  or else get 1-2-1 expert legal support and advocacy help with your assessment or appeal.

Here are some related blogs from our Care To Be Different website to help you in the meantime:

THE ABC OF CHC

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 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

Part 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

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

Rejected for CHC funding? Part 2: How to appeal the LRP Decision

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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

Old and young holding hands on light background, closeup

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the second two descriptors in the Skin 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 and seven 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

Following the 2018 revisions of the DST, Skin moved “up” from number 8 to number 4. As in the 2012 version, it still follows the Continence domain, highlighting the interaction between skin integrity and incontinence. Unlike the 2012 version, however, in the 2018 DST the Skin domain is followed by Mobility, emphasising the significant impact of immobility on skin integrity. 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 Skin 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 skin integrity is unlikely to present an immediate risk to life, in and of itself.  That being said, the complications arising from pressure damage or other skin wounds can certainly be life threatening and swift. Skilled treatment is essential to prevent rapid deterioration. The vast majority of people being assessed for CHC will fall into the descriptors for a ‘Low’ or ‘Moderate’ level of need. The ‘High’ and ‘Severe’ levels of need are reserved for those suffering from extensive or non-healing wounds, which will usually require specialist treatment by the Tissue Viability Nurse (TVN), or vascular team.

The following clinical factors are relevant to the assessment of ‘High’ and ‘Severe ‘level needs in this domain:

  • What is the extent of any existing skin damage – i.e., how deep are the wounds**?
  • What treatment regime is required and who delivers it?
  • Is the treatment effective – i.e., are the wounds responding/improving?
  • Are any specialist dressing techniques required, e.g. compression?
  • Is there any evidence of necrosis (white slough and/or dead, blackened tissue)?

**NOTE – Wounds are “graded” from 1-4 using a wound chart. Grade1 describes very superficial damage to the top layer of skin (epidermis), such as reddening or blanching. Grade 4 describes extensive damage to all three layers of the skin (epidermis, dermis, hypodermis). Extensive skin damage puts the underlying bones and joints at risk.

The main difference between the descriptors for a ‘High’ and ‘Severe’ level of need in this domain is the grading of the wound (depth/extent of damage) and whether it is showing signs of healing (“responding to treatment”).

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 ‘High’ and ‘Severe’ 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.

HIGH

Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is not responding to treatment

OR

Pressure damage or open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’, which is/are responding to treatment.

OR

Specialist dressing regime in place; responding to treatment.

Key Factors

Grade 2-3 wound, which is NOT showing signs of healing despite treatment.

Grade 3-4 wound, which IS showing signs of healing.

Specialist dressing regime, with good effect (e.g., compression to improve vascular flow).

CASE STUDY – HIGH

Care Home Skin Care Plan

Mrs. X remains very fragile, immobile and requiring nutritional supplements, impairing skin healing. Waterlow assessment tool score 32, very high risk. Air-flow mattress and pro pad cushion provided for pressure relief. Pressure wound on right foot plantar of first metatarsal head referred to tissue viability nurse for appropriate support and dressing advice, which is ongoing.  At high risk of skin breakdown due to incontinence, poor mobility and advanced age. Requires regular monitoring and repositioning to promote healing and prevent further skin breakdown. Barrier cream administered as needed to prevent skin breakdown and promote healing and protection. Repositioned every 2 to 3 hours. Make sure there is a cushion pad when seated on chair or wheelchair. Always ensure booties on both feet.

Tissue Viability Nurse Review

Wound on right foot 1cm x 1.5cm, grade 3. Centre of wound is sloughy but minimal exudate; Hydrogel dressing to aid debridement and healing. Edges of the wound are pink and epithelising. No sign of infection. Wound appears to be healing well and decreasing in size.

Mrs. X presents with a ‘High’ level of need as she has pressure damage or open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’, which is/are responding to treatment.

SEVERE

Open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’ which are not responding to treatment and require regular monitoring/reassessment.

OR

Open wound(s), pressure ulcer(s) with ‘full thickness skin loss with extensive destruction and tissue necrosis extending to underlying bone, tendon or joint capsule’ or above.

OR

Multiple wounds which are not responding to treatment.

 
Key Factors

Grade 3-4 wound, which is NOT showing signs of healing despite treatment.

Grade 4 wound; extensive damage and necrosis to all layers of the skin.

Multiple wounds, grade 2-4, which are not showing signs of healing despite treatment.

CASE STUDY 1 – SEVERE

Care Home Skin Care Plan

Mrs. X remains very fragile, immobile and requiring nutritional supplements, impairing skin healing. Waterlow assessment tool score 32, very high risk. Air-flow mattress and pro pad cushion provided for pressure relief. Pressure wound on right foot plantar of first metatarsal head referred to tissue viability nurse for appropriate support and dressing advice, which is ongoing. At high risk of skin breakdown due to incontinence, poor mobility and advanced age. Requires regular monitoring and repositioning to promote healing and prevent further skin breakdown. Barrier cream administered as needed to prevent skin breakdown and promote healing and protection. Repositioned every 2 to 3 hours. Make sure there is a cushion pad when seated on chair or wheelchair. Always ensure booties on both feet.

Tissue Viability Nurse Review

Wound on right foot 1cm x 1.5cm, grade 3. Centre of wound is sloughy, exudating and wet. Outer aspect of right big toe is black. Wound black/necrotic but looks white and appears to be infected. Swab taken. Smell is also offensive, referred to GP for antibiotics. Hydrogel dressing to aid debridement and healing. Wound does not appear to be healing well and is not decreasing in size.

Podiatrist Review

Right first metatarsophalangeal joint wound with infection 15mm diameter with surrounding callous. Seems painful as Mrs. X pulls away when touched. Already commenced antibiotics but suggest a check for diabetes due to rapid deterioration.

Mrs. X presents with a ‘Severe’ level of need as she has open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’ which are not responding to treatment and require regular monitoring/reassessment.

NOTE – This Mrs. X has the same wound, with the same treatment regime, as the Mrs. X in our example above for a ‘High’ level of need. However, in this case, the wound is not responding to treatment, has not reduced in size and has become infected. Blackened tissue indicates necrosis and Mrs. X shows signs of pain when the joint beneath the wound is touched. These factors make the difference between the ‘High’ and ‘Severe’ levels of need, although the location, size and grade of wound are the same. This is not a large wound, only 1 x 1.5cm, but the absence of healing and involvement of the underlying joint greatly increase the risk. If the joint becomes infected, there may be no option but to amputate the toe, or even the foot, to prevent the spread of infection which could rapidly lead to sepsis and death.

CASE STUDY 2 – SEVERE

Care Home Skin Care Plan

Mr. X is cognitively impaired, immobile and doubly incontinent, placing him at very high risk of skin breakdown. He is nursed in bed 24-hours a day; he is occasionally hoisted into a chair for a few hours. He is nursed on an alternating air pressure mattress and is dependent on staff to reposition him every 2 hours to reduce the risk of skin breakdown. Mr. X is prescribed barrier cream which staff apply to his skin following each episode of incontinence in order to reduce the risk of excoriation and moisture related lesions.

Relevant History

A rash was first documented to have been noticed on his back. It was initially treated as a fungal infection with numerous courses of topical and oral treatments to try to manage the symptoms. However, none of the treatments were effective and, over the following few months, the rash spread from his back to his shoulders, torso, arms and down his legs. What began as a florid rash became round scaly circular patches which were believed to be ringworm. These continued to grow and spread, with lesions joining together. They then began to breakdown, splitting open, scaling off and resulting in extensive areas of exposed flesh across his back, torso, arms and down his left leg, which have not responded to treatment. Despite numerous referrals to dermatology services, the GP has been unable to secure a domiciliary assessment of Mr. X’s skin, and he was considered too frail to attend an outpatient appointment. Mr. X was eventually admitted to hospital with extensive open skin from shoulder to wrist. He was discharged hours later with more topical creams which were applied with no effect.

Current Wound Care Plan

Mr. X’s skin on his back, shoulders and arms remains open and excoriated. The areas bleed periodically, and often ooze serous, yellow or green exudate. Staff try to manage this as best they can, under the supervision of Tissue Viability Service. As no viable treatment has been found, care centres on prevention of infection and excellent pain management. Mr. X is prescribed a Fentanyl patch 25mcg/hour, with as-required Oramorph for breakthrough pain/prior to dressing changes and repositioning.

In addition to the skin rash, Mr. X also suffers with numerous grade 2/3 wounds to both heels, left ankle, left knee and left elbow. All these wounds continue to be present, sometimes being noted to be ‘healing’ and other times with larger dimensions noted again and with purulent exudate. Currently dressed with Comfeel Plus and Hydrogel, depending on depth and amount of exudate. The Tissue Viability Nurse has been asked to review to see if there are any other treatments available.

Mr. X requires a very high level of care and management to prevent further tissue breakdown and ensure his pain is well-managed.

Mr. X presents with a ‘Severe’ level of need as he has multiple wounds which are not responding to treatment.

We hope this has helped you to understand the second two descriptors in the Skin domain.  Don’t miss the next part of this series, Mobility, coming very soon!

For further reading around the subject on pressure sores:

The dangers of pressure sores, pressure ulcers and bed sores

Take a holistic approach to improve your chances of getting CHC Funding

Does the NHS Safety Thermometer’s findings impact on your relative’s entitlement to CHC Funded Care?

NICE Guidelines – Pressure ulcers: prevention and management https://www.nice.org.uk/guidance/cg179

 

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

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Waiting for a checklist? Avoid these common mistakes

Understanding the checklist

What happens at the MDT?

Preparing for the MDT

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

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

NO NEEDS

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

No evidence of breathlessness

Does not require the use of any inhalants to aid breathing

CASE STUDY 1 – NO NEEDS

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

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

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

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

CASE STUDY 2 – NO NEEDS

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

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

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

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

LOW

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

OR

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

Some episodes of breathlessness, responsive to rest/medication

May require the use of and inhaler and/or nebuliser

Daily living activities not affected

CASE STUDY 1 – LOW

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

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

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

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

CASE STUDY 2 – LOW

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

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

MODERATE

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

OR

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

OR

Requires any of the following:

low level oxygen therapy (24%).

room air ventilators via a facial or nasal mask.

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

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

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

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

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

CASE STUDY 1 – MODERATE

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

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

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

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

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

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

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

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

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

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

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

CASE STUDY 2 – MODERATE

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

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

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

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

CASE STUDY 3 – MODERATE

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

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

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

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

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

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

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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

happy senior mother and adult daughter rest on sofa

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Standing Rules

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

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

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

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

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

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

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

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

The Care Act 2014

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

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

“1. Promoting individual well-being

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

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

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

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

(c) protection from abuse and neglect;

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

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

(f) social and economic well-being;

(g) domestic, family and personal relationships;

(h) suitability of living accommodation;

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(6) Regulations may require a local authority—

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

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

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

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

(a) the provision of care, or

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

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

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

Quick Take Away: Guidance vs. Legislation

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

Thanks again to our website Reader for your contribution. We hope this answered your question. If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our Contact Us page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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

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

Law cases and law books on a shelf

Pamela Coughlan – This series of blogs takes a closer look at the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC funding. In today’s blog, we consider the intensity, complexity and unpredictability of Ms. Coughlan’s needs, having examined the nature of her needs in Part 2. If you haven’t read Parts 1 and 2, make sure you catch up below!

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

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

Despite being handed down over two decades ago, the findings of the Court of Appeal in Ms. Coughlan’s landmark case against North and East Devon Health Authority remain fundamental to the eligibility criteria for CHC Funding to this day.

Read our blog How Relevant is the Coughlan Decision Today? for more information.

Of particular importance was the Court’s attempt to define the legal division between the Local Authority (County Council) and Health Authority (NHS) in respect of delivering care in the community. Only services that were merely ancillary and incidental to the provision of accommodation, and of a nature that Social Services could be expected to provide, could be delivered by the Local Authority and therefore means-tested. 

In the years following the Coughlan judgment, Health Authorities struggled to put the Court’s ambiguous statements into practice. A lack of nationally defined eligibility criteria resulted in a ‘postcode lottery’, with some local Commissioners being far more likely to find evidence of a primary health need than others.

Many people suggest the “postcode lottery” continues to this day.  For further reading on the subject:

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

Concerns about a lack of fairness and consistency led to the publication of the National Framework for NHS Continuing Healthcare Funding and Funded Nursing Care in 2007 (updated 2012 and 2018), providing guidance to the then Primary Care Trusts (now Clinical Commissioning Groups) about the assessment process and eligibility criteria. The primary health need test introduced a set of four criteria – Nature, Intensity, Complexity and Unpredictability – intended to answer the questions posed by the Court of Appeal:

  • Are the services required by the individual of a nature (type) that Social Services could reasonably be expected to meet? (Nature)
  • Are the services provided to the individual merely ancillary and incidental to their need for accommodation? (Intensity, Complexity, Unpredictability)

If any one of these criteria are met, the individual’s primary need must be for health, and not social, care – i.e. of a type (nature) that Social Services could not be expected to provide, and/or over and above the provision of accommodation (intense, complex, unpredictable).  The Checklist and Decision Support Tool were developed to assist Commissioners in applying the eligibility criteria consistently.

Find out more about the Checklist assessment here!

Avoid common mistakes and ensure your relative makes it through the Checklist to full assessment.

Don’t let the DST for your relative become a tick-box exercise!

Part two of this series, Needs of a “Wholly Different Category”, examined the nature of Ms. Coughlan’s needs and the type of services required to meet them. Today we shall apply the Intensity, Complexity and Unpredictability criteria to the evidence gathered, to see whether Ms. Coughlan’s needs can be described as merely ancillary and incidental to the provision of accommodation.

IMPORTANT – It must be acknowledged that the Court of Appeal did not delve into the inherent complexity of these questions or make any suggestion as to how they might be answered. Many people believe that the National Framework and Decision Support Tool fail to comply with the Coughlan judgment, in setting the bar too high and making the criteria too subjective. For the purposes of this article, we shall use the criteria set out in the National Framework, as, however valid people’s concerns, these are the criteria that will be used by the NHS to assess you or your relative today.

Intensity

This relates to both the extent (‘quantity’) and severity (degree) of the needs and the support required to meet them, including the need for sustained/ongoing care (‘continuity’).

Ms. Coughlan can eat independently using a spoon strapped to her hand, provided the food is cut up for her. Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup.

Intermittent catheterisation is performed by nursing auxiliaries every three hours; this intervention takes approximately 10 minutes plus additional time for hoisting.  Ms. Coughlan requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night.

Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is able to tolerate up to 12 hours sitting in a wheelchair so long as regular pressure-relief is afforded. Ms. Coughlan is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h).

Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Once transferred into a wheelchair, Ms. Coughlan has a reasonable amount of independence as she has retained some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. Ms. Coughlan is assisted to stand twice per week using a special frame.

In the event of an episode of autonomic dysreflexia, Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required.  Skilled, continuous monitoring of Ms. Coughlan’s condition after administration is necessary.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death, and for this reason should always be treated as a medical emergency. Autonomic dysreflexia exists on a continuum and is highly unpredictable. Mitigating the risk of AD attack requires expert care, continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Ms. Coughlan’s needs do not appear to be particularly intense. The majority are met via routine care planning and her condition now appears relatively stable. Ms. Coughlan does not require a large number of interventions during a 24-hour period (quantity) and those interventions do not require an increased amount of time or staff to perform. However, it must be acknowledged that the risk of autonomic dysreflexia is severe (degree) and the skilled care required to mitigate this risk is continuous (continuity).

Complexity

This is concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interactions between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as when a physical health need results in the individual developing a mental health need.

Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections.

While there is no acute risk of aspiration due to dysphagia, were Ms. Coughlan to aspirate food or fluids, she would be at greater risk of infection due to paralysis of the respiratory muscles.

Ms. Coughlan is doubly incontinent and is unable to relieve herself without skilled assistance. Intermittent catheterisation is performed by nursing auxiliaries every three hours to ensure frequent emptying of the bladder. Fluid intake is carefully managed to prevent overfilling.  Ms. Coughlan is unable to evacuate her bowels independently and requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night.  A cervical spinal cord injured person has no sensation below the level of their injury, meaning their body cannot tell them in the usual way when they need to use the toilet. All the body can do in such a situation is to trigger its “high alert” system, which it does by dramatically raising the person’s blood pressure. This condition is called autonomic dysreflexia.  Autonomic episodes are life-threatening and should be treated as a medical emergency. Urinary tract infections, constipation and other similar complications can quickly lead to autonomic episodes if not treated early. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential.

Ms. Coughlan has no skin sensation or perception of skin damage due to sensory paralysis below the level of her injury. She has high vulnerability to skin breakdown as she is unable to change her position in bed or wheelchair without assistance. Even minimal pressure below the level of the spinal cord injury can quickly lead to autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic attack would be extremely high, and healing would be complex. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is turned (side-to-side) 3-times throughout the night. Despite pressure-relief strategies and expert management, Ms. Coughlan has suffered pressure ulcers on her bottom. Although these areas are now healed, they remain highly vulnerable to further breakdown.

Ms. Coughlan is tetraplegic, meaning she is paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. She has no triceps function in her arms. Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Careful positioning and choice of fabrics are essential to avoid pressure below the level of the spinal cord injury, which could trigger autonomic attack. Ms. Coughlan is assisted to stand twice per week using a special frame. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension.

Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and Iron. Ms. Coughlan requires the insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which does not respond to, and is not amenable to control by, analgesics. In the event of an episode of autonomic dysreflexia, Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required.  Skilled, continuous monitoring of Ms. Coughlan’s condition after administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation, which would increase the risk of further autonomic attack.

Ms. Coughlan is only able to breathe diaphragmatically and is at medium risk of fainting if her air flow was inhibited. This is managed by wearing a ‘corset’ – abdominal binder – which keeps her chest upright.  Ms. Coughlan is at increased risk of fainting when using her standing frame.

Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Pamela is able to tell when she is too hot or too cold and therefore proactive monitoring is not required regarding this aspect of her care.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension as a result of pain or injury below the spinal injury site (C5/6). Anything that would normally be painful, uncomfortable or physically irritating may cause dysreflexia following spinal cord injury. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency.  There is a high degree of interrelation between continence care and autonomic dysreflexia; expert management of bladder and bowels is essential. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. Autonomic dysreflexia exists on a continuum. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Ms. Coughlan’s needs are complex owing to the risks arising from autonomic dysreflexia and the particular skills required to mitigate those risks. There is a high degree of interaction between the domains of Continence, Skin, Mobility, Medications and Other Significant Needs, resulting in the need for skilled care, monitoring and anticipation. The management of symptoms in the event of AD attack, including the administration of emergency nifedipine, requires specific training, knowledge and skill.  Interventions to empty the bladder and bowel are invasive and complex due to the increased risk of AD attack at such times. Although continence interventions are routinely planned and delivered, additional care outside these times may be required and is urgent owing to the increased risk of AD attack when the bladder or bowel is full. Autonomic dysreflexia is a rare condition, unique to cervical spinal cord injured people; those meeting the needs of such an individual require specific training and additional knowledge and skill. Even experienced clinicians are often unfamiliar with the condition, highlighting the peculiarity of the needs and the skills required to meet them.

Unpredictability

This describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the individual’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency. It first manifested in Ms. Coughlan ~20 years post-injury, highlighting the idiosyncratic nature of the condition. Episodes were initially very unpredictable – sometimes once per month, at other times several times in a week. They were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion this management prevented the need for vasodilators (nifedipine). Autonomic dysreflexia exists on a continuum and is highly unpredictable.  Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Ms. Coughlan’s needs are largely predictable. There is no evidence to suggest her condition is unstable or rapidly deteriorating. Ms. Coughlan’s needs are met via routine care planning and there is no evidence to suggest these fluctuate day-to-day. However, it must be acknowledged that autonomic dysreflexia is, by its very nature, unpredictable. While the frequency and severity of attack can be mitigated by skilled care, the risk of future occurrence cannot be permanently removed or eliminated.

CONCLUSION

Having considered the intensity, complexity and unpredictability of Ms. Coughlan’s needs, we conclude they cannot be described as merely ancillary or incidental to the provision of accommodation. While Ms. Coughlan does not require an increased number of interventions throughout a 24-hour period, the effects of her injury are severe. The unique challenges and interactions arising from a cervical spinal cord injury require the continuous provision of skilled care, the need for which cannot be permanently removed or eliminated. Without the provision of such daily care, Ms. Coughlan would be at risk of serious injury and death. Her primary need is for the careful management of her physical health to avoid serious medical complications, which can arise rapidly and unpredictably. Should such complications occur, immediate, skilled response will be required. Ms. Coughlan’s needs clearly present a degree of complexity that exceeds the lawful remit of Social Services. There is a degree of intensity and unpredictability to Ms. Coughlan’s needs, owing to the nature of autonomic dysreflexia.

Explaining the Vital Difference Between Health & Social Care Needs: Part 1

Explaining the Vital Difference Between Health & Social Care Needs: Part 2

Two decades after the Court of Appeal’s judgment, it would appear some people still do not accept Ms. Coughlan’s eligibility for NHS funding. Many Continuing Healthcare Assessors, and even senior staff within some Clinical Commissioning Groups, dispute the findings of the Court of Appeal, even going so far as to suggest the National Framework and Decision Support Tool are not suitable for spinal cord injured people. What lies beneath such assumptions is, we suggest, an ignorance of the severity of the needs arising from a cervical spinal cord injury and a lack of experience in caring for an individual with such an injury.

REMEMBER – The National Framework is clear that the professionals conducting the assessment must have the requisite knowledge, experience and understanding to enable them to accurately record and assess the needs. If you or your relative has a spinal cord injury, or another complex condition, you may want to ask the Clinical Commissioning Group to appoint a Special Advisor to inform the multi-disciplinary team conducting the assessment. Even if the CCG refuses to appoint such an individual, you can request this person attends the Independent Review Panel.

NOTE – You don’t have to fight this battle for CHC Funding alone. If  you need professional help or advocacy support with your assessment, MDT, appeal or a retrospective review, or just want advice about the prospects of your case, visit our 1-2-1 support page.

We hope you have enjoyed this in-depth look at the Coughlan case. If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “contact us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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

Royal court of justice

Pamela Coughlan – This series of blogs takes a closer look at the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC Funding. In today’s blog, we address the Court of Appeal’s statement that Ms. Coughlan required “services of a wholly different category” than those that could lawfully be provided by Social Services.  If you missed Part 1 of this series, follow the link below!

Read Part One of this series – But Pamela Coughlan is not really eligible for CHC, is she…?

As we discussed in Part One, the Court of Appeal’s findings in respect of Ms. Coughlan’s care requirements in 1999 continue to underpin the eligibility criteria for Continuing Healthcare funding to this day. Of particular importance was the judge’s statement that Ms. Coughlan and her fellow residents required “services of a wholly different category” than those that could lawfully be provided by the Local Authority.

As one insightful commenter has helpfully explained under Part One of this series, the judgment also clarified the legal division between the type of care delivered by the NHS and Local Authority in the community: the Local Authority could provide nursing services as part of a package of care, but only if those services were “merely incidental or ancillary to the provision of accommodation”, and of a “nature” that Social Services could reasonably be expected provide.

“The NHS does not have sole responsibility for all nursing care. Nursing care for a chronically sick patient may in appropriate cases be provided by a local authority as a social service and the patient may be liable to meet the cost of that care according to the patient’s means. The provisions of the Health Act and the Care Act do not, therefore, make it necessarily unlawful for the Health Authority to decide to transfer responsibility for the general nursing care of Miss Coughlan to the local authority’s social services. Whether it was unlawful depends, generally, on whether the nursing services are merely

  • incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide and
  • of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide. Miss Coughlan needed services of a wholly different category.”
  1. v. North and East Devon Health Authority, ex parte Coughlan

Read the full judgment here: https://www.bailii.org/ew/cases/EWCA/Civ/1999/1871.html

In the Judge’s view, Ms. Coughlan’s needs were not “merely ancillary or incidental” to the provision of her accommodation, and were of a “nature” the Local Authority could not be expected to meet i.e., the services Ms. Coughlan required as part of her package of care were of a “wholly different category” than those expected to be provided by Social Services.

Let’s have a closer look at the nature of Ms. Coughlan’s needs and shed some light on the Court’s seemingly mysterious findings.

In Part One of this blog, we used the Spinal Injury Association’s description of Ms. Coughlan’s care requirements to assess her “level of need” in each of the twelve care domains on the 2018 Decision Support Tool. On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs; three HIGH levels of need in Continence, Mobility and Drug Therapies; one MODERATE level of need in Skin; three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness; and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.

Care Domain Level of Need
Breathing LOW
Nutrition LOW
Continence HIGH
Skin MODERATE
Mobility HIGH
Communication NO NEEDS
Psychological & Emotional Needs NO NEEDS
Cognition NO NEEDS
Behaviour NO NEEDS
Drug Therapies and Medication HIGH
Altered States of Consciousness LOW
Other Significant Needs SEVERE

If you’re preparing for a CHC assessment, read our selection of helpful blogs on the subject which will let you know what to expect at the MDT:

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

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

What Is The Role Of The MDT Coordinator?

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Who completes the Decision Support Tool in NHS Continuing Healthcare?

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

Looking only at the assessed levels of need, it is difficult to understand why Ms. Coughlan was described as requiring services of a “wholly different category” than the vast majority of people living with Alzheimer’s or Dementia, particularly those who require 24-hour care in a residential setting. However, once we apply the “Primary Health Needs Test” to the evidence gathered in the twelve care domains, the reasons for the Court of Appeal’s description should become clear.

As anyone who has pursued a claim for NHS Continuing Healthcare Funding will know, eligibility depends on the application of the Primary Health Needs Test, a.k.a. the Four Key Characteristics of Nature, Intensity, Complexity and Unpredictability. If one or more of these criteria are found to be met, the person’s primary need is for healthcare; i.e. their needs are more than ancillary and incidental to the provision of accommodation and require care of a nature the Social Services cannot be expected to provide. The Decision Support Tool explains that “each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs. The totality of the overall needs and the effects of the interaction of needs should be carefully considered when completing the DST.”

If you’re preparing for a Continuing Healthcare funding assessment for yourself or on behalf of a friend or relative, read our essential tips on how Covid-19 has affected the process!

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

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

Are you ready for 1st September 2020? CHC Funding Gets Back to Business

Let’s have a closer look at the four Key Characteristics and how they might be applied in Ms. Coughlan’s case, using the summary of needs from the Spinal Injuries Association. We shall begin by setting out the nature of the needs.

IMPORTANT – The analysis of the “nature” of the needs should be the longest and most detailed of all the characteristics. The nature characteristic should provide a comprehensive picture of the person’s holistic needs, clearly setting out their daily care requirements in each of the twelve care domains as well as the interventions required to meet them. If this description is not sufficiently detailed, it will be impossible to apply the intensity, complexity and unpredictability characteristics appropriately.

Nature

This describes the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.

Ms. Coughlan was seriously injured in a road traffic accident in 1971. She sustained a complete C5/6 spinal cord injury. The cervical spine is located between the shoulders and the skull. In general terms, the higher the injury to the spinal cord, the more debilitating the effects. As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.

Read more about cervical spinal cord injuries here.

There is a common misconception that CHC Funding is only available to elderly people in care homes, but many young adults also qualify. Find out more here: Who is entitled to CHC?

As a result of her injury, Ms. Coughlan is only able to breathe diaphragmatically; she wears a corset during the daytime to keep her chest upright, without which she would suffer shortness of breath. Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections. (Breathing – LOW)

Ms. Coughlan maintains a healthy BMI and is not at risk of malnutrition. Her swallow is unaffected by the spinal cord injury and she is able to take normal consistency food and fluids. While there is no acute risk of aspiration due to dysphagia, were Ms. Coughlan to aspirate food or fluids, she would be at greater risk of infection due to paralysis of the respiratory muscles. Ms. Coughlan can eat independently using a spoon strapped to her hand, provided the food is cut up for her. Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup. (Nutrition – LOW)

Ms. Coughlan is doubly incontinent and is unable to relieve herself without skilled assistance. She wears continence pads in case of accidents, but these rarely occur. Intermittent catheterisation is performed by nursing auxiliaries every three hours to ensure frequent emptying of the bladder.  Fluid intake is carefully managed to prevent overfilling, which can trigger an attack of autonomic dysreflexia, see below. Ms. Coughlan is unable to evacuate her bowels independently and requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night. A cervical spinal cord injured person has no sensation below the level of the injury, meaning their body cannot tell them in the usual way when they need to use the toilet. All the body can do in such a situation is to trigger its “high alert” system, which it does by dramatically raising the person’s blood pressure. This condition is called autonomic dysreflexia. Episodes are life-threatening and should be treated as a medical emergency. Urinary tract infections, constipation and other similar complications can quickly lead to autonomic episodes if not treated early. Manual evacuation procedures can trigger attacks of autonomic dysreflexia and as such require particular skill. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential. (Continence – HIGH)

Autonomic dysreflexia is a rare condition. Even experienced clinicians do not always recognise the immediate risks to the individual and the need for urgent care. Listen to Tracy’s story of a frightening experience at A&E here.

Ms. Coughlan has no skin sensation or perception of skin damage due to sensory paralysis below the level of her injury. She has high vulnerability to skin breakdown as she is unable to change her position in bed or wheelchair without assistance. Even minimal pressure below the level of the spinal cord injury can quickly lead to an attack of autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic episodes is extremely high. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is able to tolerate up to 12 hours sitting in a wheelchair so long as regular pressure-relief is afforded. Ms. Coughlan uses a silicon-foam cushion in her wheelchair, but tolerates a standard mattress providing she is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h). She returns to bed for intermittent catheterization every 3 hours (typically for a 10 min duration), which affords regular pressure relief.  Despite pressure-relief strategies and expert management, Ms. Coughlan has suffered pressure ulcers on her bottom. Although these areas are now healed, they remain highly vulnerable to further breakdown. Skin breakdown is extremely dangerous for a spinal cord injured person due to the interaction between compromised skin integrity and autonomic dysreflexia. Should breakdown occur, healing process would be lengthy and complex. Expert management of skin integrity is essential. (Skin, including tissue viability – MODERATE)

Ms. Coughlan is tetraplegic, meaning she is paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. She has no triceps function in her arms. Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Careful positioning and choice of fabrics are essential to avoid pressure below the level of the spinal cord injury, which could trigger autonomic attack. However, once transferred into a wheelchair Ms. Coughlan has a reasonable amount of independence as she has retained some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. Ms. Coughlan does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week using a special frame helps with maintaining appropriate organ positions and strengthening her bones. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension. (Mobility – HIGH)

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

Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and, Iron. She does not require a complex daily regime of medications. Ms. Coughlan requires the insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which is not amenable to control by analgesics. In the event of an episode of autonomic dysreflexia Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required.  Skilled, continuous monitoring of Ms. Coughlan’s condition pre-and post-administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation.  Autonomic dsyreflexia exists on a continuum; the risk of attack cannot be permanently recued or removed, although expert care planning can reduce the likelihood and severity of episodes. (Drug Therapies & Medications: Symptom Control – HIGH)

Ms. Coughlan is only able to breathe diaphragmatically and is at medium risk of fainting if her air flow was inhibited. This is managed by wearing a ‘corset’ – abdominal binder – which keeps her chest upright. Ms. Coughlan is at increased risk of fainting when using her standing frame. (Altered States of Consciousness – LOW)

Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Ms. Coughlan is able to tell when she is too hot or too cold and therefore proactive monitoring is not required regarding this aspect of her care.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Anything that would normally be painful, uncomfortable or physically irritating may cause dysreflexia following spinal cord injury. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency. It first manifested in Ms. Coughlan ~20 years post-injury, highlighting the idiosyncratic nature of the condition. Episodes were initially very unpredictable – sometimes once per month, at other times several times in a week. They were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion, this management prevented the need for vasodilators (nifedipine). Autonomic dysreflexia exists on a continuum and is highly unpredictable. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence. (Other Significant Needs – SEVERE) 

Read the National Spinal Injuries Association’s Factsheet on Autonomic Dysreflexia here.

Conclusion

As should be apparent, the type of services Ms. Coughlan requires throughout the 24-hour period relate to the careful management of her physical health, without which she would be at critical risk of cerebral injury and even death.

Ms. Coughlan’s care team requires specialist knowledge of the unique challenges arising from a cervical spinal cord injury, and in particular autonomic dysreflexia.

As Tracey’s story above demonstrates, even experienced A&E clinicians, who see a wide variety of patients every day, have often never encountered autonomic dysreflexia, and are unaware of the critical risks it presents and the need for urgent care.

Owing to the nature of her needs, Ms. Coughlan requires services of a wholly different category than those that an authority whose primary responsibility is to provide social services can reasonably be expected to deliver.

While many sufferers of Dementia, Alzheimer’s and stroke also need full assistance to meet their continence, skin, mobility and medication needs, the nature of the interventions often does not exceed the type of services the Local Authority can reasonably be expected to provide, i.e., routine assistance with eating, drinking, washing, dressing, toileting, moving around safely, maintaining skin integrity and ensuring compliance with routinely prescribed oral medications. The staff meeting needs of this type would not usually require any additional skills or particular training. None of these interactions would require the oversight of a trained nurse, or other similarly skilled professional, due to the risks to the individual should poor care, or difficulty, arise. Were care to be missed for some reason – e.g. non-compliance, staff shortages, emergency – there would be no immediate, urgent risk to the person’s safety, i.e. their life would not be endangered. None of these statements would be true of Ms. Coughlan.

This concludes our examination of the Nature of Ms. Coughlan’s needs. We hope you have found it informative. Next week we shall apply the Intensity, Complexity and Unpredictability characteristics to the information we have gathered about Ms. Coughlan’s daily care requirements to see if any of those criteria are met.

Don’t miss Part 3, “Ancillary and Incidental to the Provision of Accommodation”, coming next week!

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How To Avoid Selling Your Home To Pay For Care…

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

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

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

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

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

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

There are two types of nursing care funding:

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

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

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

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

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

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

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

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

1. Following discharge from hospital into a care home:

With effect from 1 September 2020, the Government (via the NHS) has put in place emergency funding to pay for the first 6 weeks of care. [This was reduced to 4 weeks from the 1 July 2021]. This period is designed to give families peace of mind whilst the NHS carry out an assessment of their care needs.

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

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

2. Entitlement to NHS Continuing Healthcare Funding:

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

3. Consider Independent Financial Advice:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What happens next?

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

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

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

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

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

Are you eligible for a DPA?

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

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

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

Ending the DPA

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

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

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

Some advantages of a DPA

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

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

Disadvantages of a DPA

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

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

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

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

Summary

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

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

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

Placing a relative into care…

Will you be self-funding?

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

Is your relative claiming their full entitlement to benefits?

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

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