Here’s a quick recap:
In PART 1- Looking At The 4 Key Indicators: Unlocking the basics, we gave an outline introduction to the 4 Key Indicators, what they are, and how they are considered by the Multi-Disciplinary Team’s assessment process when completing their Decision Support Tool (DST).
In PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence, we looked in more detail at the 4 Key Indicators and the type of evidence that ought be obtained and considered when creating the jigsaw picture of needs in the Decision Support Tool (DST).
In PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw, we explored the issues around completing the 4 Key Indicators and how the pieces of information gathered, must connect and interact between the various Care Domains to complete the picture. Only then can you stand back and look at the overall needs holistically and reach a recommendation as to eligibility for CHC Funding.
In the final blog in the series we offer some tips when drafting the Key Indicators (Nature, Intensity, Complexity and Unpredictability) and give a detailed worked example.
Writing the Key Indicators is a skill which most families will not and cannot be expected to know. To do the job properly involves years of experience, being able to digest an enormous amount of detail, and summarising the information in a coherent and meaningful manner.
Given that the outcome of the assessment (or appeal) can make the difference between your relative getting a fully-funded package of free CHC care and paying nothing, or paying many thousands of pounds a week in care fees, we recommend getting professional help. Visit our one-to-one page for more information.
As we said in PART 3, the Key Indicators should provide a summary of the individual’s needs. When you read the 4 Key Indicators, you should know what the individual’s needs are and how they are being cared for.
We also recommended breaking each Key Indicator into smaller periods of time (eg annually) rather than summarising long periods care needs spanning many years, as if it’s all one continuous period. This latter approach may be unrealistic as it might appear that the level of need was consistent throughout, when in reality it is likely to fluctuate over a number of years. So, breaking the Key Indicators into smaller batches of time might work to your advantage.
We suggest writing the Key Indicators in neutral terms, stating the facts and linking the care needs across the Domains, before adding a conclusion at the end of each section.
Top Tips for Nature
The key tip here is to use ‘Nature’ to set out your stall in great detail. Include plenty of factual evidence from the 12 Care Domains in this section and state the care needs resulting.
Consider doing a timeline to identify ‘ups’ and ‘downs’. Look for patterns and see what needs were impacting on others. This can often make it easier to see where needs have changed eg from mobile to immobile, or where there has been an intervening event, such as a stroke. Use your timeline to plot events and write ‘Nature’.
Don’t put your conclusion at the beginning of the paragraph eg: ‘Mrs X was eligible for CHC because…’, and watch out for CCG assessments where this happens, as the temptation is to justify why the care is not needed rather than to look positively at the care needs.
Rather, it is better to start paragraphs: ‘Mrs X needed carers to…’
Don’t be tempted to write about what care the individual doesn’t need and watch out for CCGs doing this to justify a non-eligible decision – it is likely that they will have forgotten the actual needs.
State the level of need you have selected (or that the CCG has agreed), and select your terminology and adjectives carefully e.g. ‘had considerable needs’ or ‘had no ability to assist carers’ or ‘was unable to co-operate in the care’ or ‘was resistive to her care’.
Avoid using bullet points.
Don’t forget to identify any unmet needs and mention what should have been happening. Remember in Part 3 we discussed reading in-between the lines and identifying needs.
Consider practical care needs. Using the evidence collected in the Care Domains, think about the individual’s day, how they get up, what carers need to do throughout the day until bed, what care is needed at night, when the challenging behaviours take place (e.g. if at 2am or 3am – is there limited staff available?), who is involved in their care, how long it takes and what skills are needed to do it. This will undoubtedly help you link the Domains and consider how they interact.
Think about the practical aspects of caring for the individual. For example, do they eat in bed or in the lounge? If in bed, perhaps only 1:1 care is needed to assist with feeding; but do they need 2:1 to be positioned beforehand and afterwards?
Look at reports from any specialists. Do they give specific care instructions e.g. SALT often say things like ‘stage 2 fluids’, ‘thickened liquids’, ‘feed upright’, ‘sit upright for 30 minutes after meals’ etc. Make sure these instructions are recorded in ‘Nutrition’. Reiterate it in ‘Nature’ and link it to ‘Mobility’ issues. For example, can they hold the beaker/cup themselves, and if not, is there a time implication? Invariably there will also be a skills issue if they have a swallow deficit or aspiration risk, as carers will need to take time around meals and drinks throughout the day, and will need the competence to feed the individual. Is the sitting balance poor – as this adds to the difficulty; or do they need propping up to feed? Do they have poor head control?
For example, a Parkinson’s specialist report may have helpful information that is often lost in the DST. Under ‘Mobility’ ensure the detail is included (e.g. ’freezing’, ‘cogwheel like movements’), and state how this impacts on walking, transferring, holding a cup or spoon. Timing of medication is generally crucial for Parkinson’s – how often are they having the medication (usually 4 times a day), and are there any compliance issues? Repeat the information in the 4 Key Indicators.
‘Behaviour’ – if they are generally non-compliant or resistive to care, explain how often and how many carers are needed and for what specific tasks, and include to which aspects of care they are resistive? Don’t forget to add it onto your paragraph about each of those Domains e.g. ‘Mrs X was doubly incontinent and needed 2 carers to assist with pad changes due to her poor mobility (‘High’ needs) and was resistive to pad changes (‘Moderate’ needs) and had poor cognition (‘Severe’ needs). Carers needed to take extra time to perform the care and experienced carers were needed.’
Think about how each Domain is impacted by all the others and write everything down. Don’t just write ‘had needs in several domains’. You must explain how it impacted. Go into detail and think practically.
Remember that ‘Nature’ is a Key Indicator so a person can be eligible under this heading, so take your time and include lots of detail.
Make sure you conclude with a summary stating with a line to this effect: “The nature of Mrs X’s needs are such that they cannot be lawfully met by the Local Authority.”
Top tips on Intensity
If you prepared a detailed summary under Nature, you can use that to capture the main points in this Key Indicator, perhaps excluding some of the less relevant material here.
Make sure you conclude with something like: “Mrs X presents with a level of intensity that cannot be lawfully met by the Local Authority.”
Top tips on Complexity
If you prepared a detailed summary under Nature, you can use that to capture the main points in this Key Indicator, perhaps excluding some of the less relevant material here.
Make sure you conclude: “The [degree of] complexity of Mrs X’s needs cannot be lawfully met by the Local Authority.”
Top tips on Unpredictability
This is often the hardest indicator to write.
Think: does the individual’s health yo-yo? Are they having lots of infections that are increasing/changing care needs for periods? Are there lots of medication changes to try to get the condition under control, and if so, why is this, and how are the changes impacting on carers? Do they have lots of seizures that need rapid response? Describe what is needed and the care home’s ability to meet those needs. Does the care plan frequently need to change? Do carers need to respond to the change quickly and if so, what do they need to do? Is the individual well one day and not the next, so that carers need to assess them daily?
Try and avoid the use of the words ‘predictable’ and ‘unpredictable’ as it means different things in normal daily use. Instead use words or phrases like ‘unstable’, ‘needs kept changing’, ’it is difficult to plan care because…’, or ‘the number of carers and tasks that they needed to do changed daily because…’
If there is challenging behaviour, explain in a short paragraph: ‘It was known that Mrs X would be resistive on personal care and this was accommodated in the care plan…’
Write your Key Indicator summary at the end, don’t lead with your conclusion at the beginning (see Nature above).
Make sure you conclude with a sentence such as: “Mrs X’s care needs are unpredictable and beyond the remit of what the Local Authority can lawfully provide.”
Here’s an example of well-drafted Key Indicators using a hypothetical patient, “Mrs X” (not her real name). Of course, each case will depend on its own facts, but you might recognise some common needs below.
Mrs X is unable to assess risk to herself or others and does not have any insight into her care needs. Mrs X places herself at risk by her impulsive behaviour and her tendency to stand unaided and fall. Mrs X has some short and long term memory issues and at times she is confused and agitated. This is often related to urine infections. Mrs X is able to recognise her 3 children but has difficulty with some other members of the family.
Mrs X is able to make simple choices if assisted by the staff and at times she can become fixated on certain topics and suffers for delusions. Mrs X also has hallucinations and suffers with low mood, lack of motivation and apathy. Mrs X has been prescribed Citalopram and the dose increased.
Mrs X is unable to participate in activities such as watching the television due to her restricted eye movement and her inability to communicate effectively. Mrs X has been diagnosed with dysarthria and she is unable to form words very easily and she cannot form a sentence. Mrs X appears to have a limited level of comprehension and it is possible to ascertain her care needs if the family and staff who are familiar with her are present.
Mrs X is able to use her call bell, which is on a cord around her neck. Mrs X has a very soft voice and an amplifier has been provided by the Speech and Language Therapist. Mrs X is unable to use facial expression or hand and body gestures to communicate.
Mrs X has suffered with numerous falls and significant minor injuries. Mrs X will attempt to stand unaided and fall, crash and falls mats are now in place to reduce the risk of injury. Mrs X has a very stiff and rigid upper body and her right arm is contracted which causes pain and a painful shoulder. Mrs X has difficulty moving her legs and feet but can be transferred with two members of staff. Mrs X does not have any sitting balance and if leaning forward she will topple out of her chair. Mrs X has a specialised recliner and wheelchair. Mrs X suffers with giddiness and postural hypotension.
Mrs X has suffered with dehydration and difficulty swallowing and a PEG was inserted to enable her to meet her nutritional requirements. Mrs X is at risk of choking and aspiration but in order to enhance her quality of life she is offered a small amount of pureed food and thickened fluids at mealtimes. Mrs X has remained free of chest infections. However, there is an indication that she suffers with breathlessness when eating. Mrs X tends to suffer with a dry mouth and she has been prescribed oral balance gel. There has been a problem with the PEG due to a split in the tube and this was replaced. Mrs X receives her PEG feed via bolus administration 5 times a day.
Mrs X’s weight has fluctuated but currently she is not at nutritional risk.
Mrs X is incontinent of urine and will frequently ask to use the toilet due to an overactive bladder caused by detrusor hyper-reflexia. Mrs X has been treated for several urine infections and she wears continence pads and the staff take her to the toilet on a regular basis. Mrs X suffers with constipation and is prescribed medication to manage her bowels, she is occasionally incontinent of faeces.
Mrs X has suffered with significant minor injuries to her skin due to falls and washing and dressing. Mrs X is at very high risk of developing skin integrity issues particularly as her mobility is restricted and her skin is very thin and tears easily. Mrs X’s PEG site has a daily cleaning regime and is currently clean and dry and the staff undertake preventative intervention several times a day. Mrs X becomes very hot and sweaty and particular attention has to be taken in relation to skin folds and creases.
Mrs X’s medication is administered via her PEG where appropriate. Mrs X suffers with pain and her analgesia has been adjusted. Mrs X’s medication needs to be administered at specific times to prevent any relapse in her condition. Mrs X has eye drops and medication specifically related to her tendency to be dizzy, postural hypotension and rigidity.
Mrs X has suffered one episode of unresponsiveness when she fell and suffered a head injury.
The nature of Mrs X’s needs are such that they cannot be lawfully met by the Local Authority.
Mrs X needs all her care needs to be met by the staff. Due to Mrs X’s inability to assess risk and her frequent attempts to stand unaided and falling she needs to be closely monitored and falls and crash mats are now in place.
Mrs X has a low rise bed and despite these management strategies she requires very close monitoring particularly when she is confused and agitated due to urine infections. Mrs X will press her call bell frequently even though she may have just received care, when the staff leave her she has been known to frequently fall. When Mrs X presses her bell the staff have to go through a process of elimination to ascertain if she requires anything. Mrs X’s tendency to be impulsive increases the amount of times the staff have to ensure she is safe, this is evident during the day and night.
Mrs X needs additional time to communicate with the staff and for the staff to take time and skill to ensure they have interpreted what she requires. At times Mrs X can become fixated on certain topics and it is difficult to distract her.
Mrs X is able to weight bear but requires two members of staff to transfer or reposition her. Mrs X is very stiff and finds it difficult to move her legs and feet and her upper body is rigid. Mrs X suffers with pain in her contracted arm and associated shoulder and she needs to be transferred and moved with care and consideration given her tendency to be giddy and suffer with postural hypotension.
Mrs X has a PEG in situ, and she is in receipt of five bolus feeds a day as well as water 30mls pre and post bolus feed and additional water with her medications which is undertaken three times a day. This equates to eight care interventions a day plus the care of the PEG site and this has to be undertaken by the nursing staff. In addition, Mrs X is offered a small amount of diet and fluids for pleasure and she can take some time to eat. Mrs X has to be in the correct position during the receipt of her PEG and oral nutrition and remain in this position for at least 45 minutes to prevent the risk of choking and aspiration. Mrs X is also weighed on a monthly basis.
Mrs X has been diagnosed with an overactive bladder and will frequently ask for the toilet. Mrs X has continence pads in situ and is occasionally incontinent of faeces. The staff have to provide preventative intervention several times a day to reduce the risk of skin integrity issues and on a daily basis a skin check is required due to the fragility of her skin and propensity to suffer skin tears. During washing and dressing and any transfers or repositioning the staff have to be very careful not to cause her any damage to her skin. At times Mrs X has required dressings to skin wounds that she has sustained from falls.
Mrs X requires frequent interventions during the day and night related to all her care needs and the staff need to be skilled and knowledgeable and fully aware of her presenting condition to reduce the risks she is exposed to. In order to reduce any risks, the staff have to ensure that they undertake Mrs X’s care needs in a timely fashion and with care attention.
Mrs X presents with a level of intensity that cannot be lawfully met by the Local Authority.
Mrs X has a high level of care needs that interact across the care domains. Mrs X has a high level of cognitive impairment and is unable to assess risk to herself. Mrs X is very impulsive and will attempt to stand unaided and has fallen and suffered with significant minor injuries. Mrs X has short term memory loss and is unable to remember that she is likely to fall should she try to mobilise unaided.
The risk of falling has been exacerbated by postural hypotension and giddiness. Mrs X is also unable to control her balance and when leaning forward in the chair she is at high risk of falling forwards, which she has on a number of occasions. Mrs X does not have any sitting balance and she has a specialised chair and wheelchair to support her. Mrs X has a very rigid upper body and one of her arms is contracted, this prevents her from responding to any potential falls and reducing any injury that may occur. Mrs X has fractured her femur in the past and is prescribed Zoledronic Acid IV every year to reduce the risk of further fractures should she fall.
Mrs X suffers with pain and is prescribed a Butrans Patch 10mcg and Paracetamol, but she still has discomfort in her arm and shoulder and is particularly an issue when being moved and repositioned.
At times of infection Mrs X becomes more confused and agitated and she experiences vivid dreams and hallucinations. Mrs X also has the tendency to become fixated on a certain topic and it is difficult to distract her, if not impossible at times. Mrs X is prescribed an antidepressant and the dose of this medication has recently been increased due to low mood, she had become apathetic and lost interest in herself. Mrs X has experienced a significant amount of change and trauma in her life recently and she has withdrawn from a majority of activities and socialising with other residents. Mrs X has become dependent on her very supportive family and the staff for her interaction and support.
Mrs X has difficulty communicating her care needs and will become frustrated. Mrs X has difficulty moving her lower jaw to form words and her speech is slurred. Mrs X may be able to say one word, but she cannot form a sentence and she has a speech amplifier as her speech is very quiet. Mrs X is unable to communicate using facial expression or hand gestures and the staff have to anticipate her care needs which is also evident when she has pushed her call bell. Mrs X is unable to look down as her eye movement is restricted and she looks to the ceiling all the time. This impacts upon her ability to use eye movement to communicate and also increases the difficulty she has viewing anything, like the television. Mrs X’s hearing appears to be intact. The Speech and Language Therapist has provided equipment to aid Mrs X when she attempts to communicate.
Mrs X is at high risk of choking and aspiration and she receives her nutrition via the PEG which is delivered five times a day. In order to maintain some pleasure, Mrs X is offered thickened fluids and a pureed diet at normal mealtimes, but she is only to be offered up to 10 teaspoons of food and fluid at one mealtime. Mrs X is clearly at risk of choking and aspiration and an agreement has been reached with the Speech and Language Therapist that in order to maintain some pleasure regarding food and fluid that a small amount of diet can be offered. It is very important to note that although Mrs X does not need any oral intake to maintain her nutrition, however, it is of great importance that for her general health and wellbeing this is continued for as long as possible. Mrs X is weighed monthly and reviewed by the Dietician on a regular basis to ensure her feeding regime is meeting her nutritional needs.
The staff have to be skilled, knowledgeable and trained to administer the PEG feeds and assist Mrs X with her puree diet and thickened fluids meals and be aware that she needs to be in an upright position during and after receipt of any method of delivery to reduce the risk of choking and aspiration. This is also to be undertaken when Mrs X has her medication administered via the PEG. Mrs X can become breathless when eating or drinking and she is prescribed oral balance gel due to a dry mouth. If Mrs X should choke the staff have to know how to respond appropriately.
Mrs X experiences urinary frequency and incontinence and she has been diagnosed with an overactive bladder due to detrusor hyper-reflexia and will frequently want to use the toilet and then not pass any urine. Mrs X was previously prescribed medication in order to manage this problem, but this is not evident at the time of assessment. Mrs X suffers with frequent urine infections which are treated with antibiotics and she becomes confused and agitated. Mrs X is prescribed medication to manage her bowels as she tends to become constipated. Mrs X is occasionally incontinent of faeces.
Mrs X is at high risk of developing skin integrity issues. This is due to her immobility and urinary incontinence as well as her tendency to become very hot and sweaty. Preventative intervention is required several times a day and she has been provided with a pressure relieving mattress and specialist chairs with pressure relieving qualities. Mrs X has very thin skin and she bruises easily, and she has suffered with significant wounds to her legs and head due to falls, and also skin tears during washing and dressing. Removing Mrs X’s top clothing and washing and drying the skin folds is difficult due to the contractures, rigidity and pain she suffers in her upper body.
Mrs X is prescribed analgesia, but she still suffers with pain. The PEG site has to be cleaned on a daily basis and inspected for patency given the issue that was experienced in [date] when the PEG tube was cracked and had to be replaced.
Mrs X is administered her medication via the PEG where appropriate. Mrs X is prescribed Pyridostigimine which has to be given on time otherwise her symptoms are likely to become worse. Mrs X remains under the care of the Neurological Team and she has been referred to the Hospice for symptom management when required.
Mrs X is presenting with a range of care needs that are complex in nature and cannot be viewed in isolation of each other. Mrs X has been at the nursing home since [date] and the staff have become skilled and knowledgeable in relation to her diagnosis and her presenting care needs. The staff would have required additional training to understand the disease process and the associated care needs to understand and adequately plan Mrs X’s care in order to reduce the risks that she is constantly exposed to.
The degree of complexity of Mrs X’s needs cannot be lawfully met by the Local Authority.
The nature of Mrs X’s disease is progressive and consequently unpredictable. Mrs X has clearly deteriorated since the beginning of [date] and her functional status has reduced. There did not appear to be a specific reason for this decline and her care needs. Mrs X’s care needs are, in part, being met due to the skill of the staff and knowledge of her condition. The staff have become familiar with Mrs X and her disease pathway and this is of great benefit to her.
The deterioration that Mrs X has experienced in the past and also suffered at the beginning of [date] indicates that this is very likely to happen again given the deteriorating nature of the condition she is suffering. Mrs X will continue to present with urine infections and falls and the risks already highlighted will not reduce albeit they may change as the disease progresses.
Mrs X’s care needs are unpredictable and beyond the remit of what the Local Authority can lawfully provide.
Having reviewed all the evidence, and having considered the nature, complexity, intensity and unpredictability of Mrs X’s overall healthcare needs (taking into account any interaction between those needs and the evidence from all supporting information provided), it is recommended that Mrs X did have a Primary Health Need, as identified by the MDT [date(s)] and at the time of assessment on [date], as her care needs were over and above that which the Local Authority would be expected to provide.
We hope that you have found the series of blogs on the Key Indicators helpful and will now give you more confidence in dealing with the DST and understanding the level of detail (and time!) required to compile a thorough assessment of needs.
Getting to grips with the 4 Key Indicators underpins the whole assessment and appeal process. However, we expect that most families are going to need specialist help at the MDT or with an appeal, to avoid being over-whelmed by the CCG’s assessors and the whole process. Otherwise, they could jeopardise their relative’s chances of success. If you want help, visit our one-to-one page for more information of call our Advice Line.
If you don’t agree with the CCG’s outcome following the MDT – then you must appeal. Beware, as there are strict time limits for doing so. Our caretobedifferent website contains many free useful articles and tips on appealing. Use the search box to take a look.