15. It is our role to decide whether NHS England’s IRP acted in line with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care when it considered whether Miss N was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHS England should follow when it considered if someone is eligible for CHC.
16. We cannot consider the discretionary decisions the IRP made when it decided on eligibility. This includes the decisions it makes based on clinical judgement and clinician’s opinions. We can only consider if the IRP has followed the National Framework. This means we can only uphold a complaint about a CHC eligibility decision if we think the IRP did not follow the National Framework when it made its decision.
17. The IRP reviews if the ICB should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the ICB’s procedures when it made its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the ICB made a mistake, it can:
• recommend the ICB reconsiders if the patient had a primary health need, and • recommend the ICB addresses any procedural faults the IRP identified.
18. When we look at a complaint about an IRP, we consider if it took into account all the relevant information when it made its eligibility decision. Mrs O disagreed with the IRP’s consideration of Miss N’s needs in four of the 12 domains. She also did not agree with the overall conclusion that Miss N was not eligible for CHC so we will look at how it considered the ‘primary health need’ test.
Did the IRP clearly explain how it had reached its decision?
19. The National Framework says ICB’s and NHS England should use the decision support tool (DST) to determine a person’s eligibility. The DST breaks a person’s care needs down into 12 areas. These are what we refer to as the domains. Each domain is broken down into levels of need and can range from ‘no needs’ to ‘priority’. It also describes each level of need to guide clinicians. We call these the descriptors. Mrs O has complained about specific domains, and we have looked at each of them individually here.
Communication
20. Mrs O says Miss N’s needs in this domain should be high.
21. The DST describes a high level of need in this domain as:
‘Unable to reliably communicate their needs at any time and in any way, even when all practicable steps to assist them have been taken. The individual has to have most of their needs anticipated because of their inability to communicate them.’
22. Mrs O and her advocate said that on a day-to-day basis, Miss N’s needs had not changed since 2006, when she was first awarded CHC. They explained that they might ask Miss N if she wanted a drink, and although she might say no or yes, the answer might not be reliable. They say, even with instructions, it is very difficult as she cannot reliability communicate her needs, even with assistance.
23. Mrs O told the IRP that all of Miss N’s needs are anticipated and she cannot make even basic decisions.
24. The IRP has scored this domain as moderate.
25. The DST describes the moderate domain as:
‘Communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.’
26. The IRP said it gave careful consideration to the documentary evidence and the submissions made. It quoted the care plan review from 2016 (on page 136), which says:
‘Lizzie has no verbal communication. Lizzie will usually answer questions providing they are not too complicated. She has a communication book using symbols/pictures. She will answer yes/no using eye pointing and she can also touch a carers hand or an object to indicate her choice. Lizzie needs a quiet environment with no distractions to help her communicate effectively’ and ‘Lizzie needs people who know her well and are able to interpret signs of discomfort/distress or upset and intervene accordingly’.
27. The IRP say that it is evident that over the review period, significant professional effort was in place to assist in the development of Miss N’s communication skills. It then carried on to quote a summary from the Speech and Language Therapy (SaLT) report, SaLT reviews, and Miss N’s communication profile.
28. The IRP concluded that following consideration of the available evidence, this supported a moderate level of need. There was evidence of Miss N communicating her needs and wishes.
29. The IRP did not consider there was evidence which supported the proposition ‘unable to reliably communicate their needs at any time and in any way’, which is the key element of the descriptor for a high level of need.
30. In summary, the IRP has explained it concluded there were well-documented examples of Miss N being encouraged to make choices when these were offered by staff, and that this was crucial in facilitating a degree of autonomy. These examples included DVD/TV choices and items of clothing and choices of drinks or food. The use of augmented communication enabled Miss N to express herself and promote her communication abilities.
31. From viewing the available information, we can see that the care plans that were put in place throughout the review period remained unchanged in relation to communication. They show that Miss N was able to make choices by herself, but was given options from the staff to allow her to do this.
32. We can see from looking at the care records that Miss N was not completely unable to communicate her needs. She was able to make choices such as if she would like to eat, what clothes she would like to wear, if she would like to go to bed and if she needed painkillers.
33. Whilst Miss N’s communication was not always accurate or reliable, there is nothing to suggest that she was completely unable to communicate reliably, which is what would need to be evidenced to consider the high weighting for this domain. Staff could easily assist Miss N with anticipating her needs and helping her make basic choices.
34. When considering this domain, we can see the IRP considered both the evidence Mrs O’s views on communication needs. When we weigh up the evidence, it appears the IRP acted in line with the National Framework. There is no indication of what the IRP would have needed to see to give a higher weighting here. We have not seen indications of a failing regarding its decision in this domain.
Psychological and Emotional Needs
35. Mrs O says that Miss N’s needs are high in this domain.
36. The DST describes a high level of need in this domain as:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being.
OR
Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.’
37. Mrs O said that she disagreed with the ICB’s level of need of need. She confirmed that the care home was very motivated to ensure that residents made full use of the community.
38. Mrs O’s advocate added that a moderate level of need is one which is characterised by anxiety and periods of distress that don’t readily respond to reassurance and have increasing impact on well-being, whereas high is where there is a severe impact on well-being. As Miss N could be upset for a whole shift, she felt this was a high level of need.
39. The IRP concluded that Miss O’s needs are moderate in this domain.
40. The DST describes a moderate level of need in this domain as:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being.
OR
Due to their psychological or emotional state the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.’
41. The IRP said that it gave careful consideration to the evidence available and the submissions made.
42. It noted that it was evident that throughout the review period, Miss N was regularly engaged in social activities with other residents and staff and with her family, and this included outings such as shopping and the theatre. There was therefore no evidence that she had withdrawn in any way from daily activities.
43. The IRP explained the care records indicate that mood swings and discomfort or distress were related to Miss N’s menstrual cycle or other sources of discomfort such as constipation or the need to change posture.
44. It is acknowledged that Miss N could be distressed for no apparent reason and staff needed to undertake a process of elimination in order to resolve this. Strategies included provision of paracetamol, postural change, reassurance, singing and other distractions. These were usually but not always successful in reducing her distress.
45. The IRP concluded that there was evidence of symptoms of distress and that Miss N was not always responsive to prompts, distractions and reassurance or other strategies such as pain relief when offered by care staff. The IRP noted that Miss N’s menstrual cycle was particularly problematic. Therefore, in summary, the IRP concluded that this presented evidence that Miss N’s needs were moderate in this domain.
46. From viewing the evidence, within the care plans and risk assessments, it is noted that Miss N does not appear to have any psychological issues. We cannot see that any services relating to psychological and mental health needed to intervene to due Miss N’s psychological needs.
47. When any psychological or emotional events did occur, which were normally associated with her behaviour, Miss N was able to respond when the staff used different methods to reassure or distract Miss N.
48. From viewing the care home records, we can see that Miss N was frequently involved in activities inside and outside the care home. There was not much resistance to this, and she had not withdrawn from any activities due to her psychological state.
49. The IRP explained the reasons for its views on Miss N’s level of need in this domain, and we can see that it considered and considered Miss O’s views. We can see no indications of failings in how the IRP considered this domain, and how it concluded that this should be a moderate level of need, as the evidence correlates with the descriptor.
Behaviour
50. Mrs O says that Miss N’s needs in this domain are severe/priority.
51. The DST describes a severe level of need in this domain as:
‘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.’
52. The DST describes a priority level of need in this domain as:
‘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.’
53. Mrs O said that the ICB’s considerations were formed from the evidence in Miss N’s care plans, but these care plans were not the best, and not very detailed. She said that the care notes don’t show a full picture of how Miss N was on daily basis.
54. Miss N’s behaviours were often unpredictable. Staff also, on occasion, used restraints as she would kick out. Medication was also used to calm her down on occasion. Mrs O said that these behaviours could go on for a long time.
55. Mrs O explained Miss N needed carers who were trained to deal with her behaviour, and if they did not use restraints, she would kick carers and damage property. Miss N also occasionally had medication to calm her down.
56. Mrs O said that during the review period, Miss N needed 1-1 care. During periods of challenging behaviour, there would be two staff with her. Sometimes they had to give her pain relief, and she would eventually exhaust herself.
57. Mrs O said that if Miss N she did not have this care, she would cause chaos. Lastly, Mrs O said that ankle restraints were in place in the review period.
58. The IRP concluded Miss O’s needs are high in this domain.
59. The DST describes a high level of need in this domain as:
‘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.’
The IRP considered the available evidence and submissions.
60. The IRP identified that in the care plan review on page 1346, dated April 2016, it says that Miss N’s behaviours can include kicking, hair pulling and lashing out. These can be attributed to a variety of factors such as frustration, ill-health or on occasion an unknown factor.
61. The IRP explained skilled staff are required to support Miss N when these behaviours were presented. It also confirms that advice from a behavioural psychologist from the Learning Disabilities Team was instigated via the GP and took place in 2015. The review notes that these behaviours had largely reduced by this time and the conclusion of this assessment was that he confirmed that the interventions they were using were appropriate for her.
62. The IRP said that there is no evidence of further clinical advice after this visit. In addition, there is no evidence of a prescription for any ‘as required’ medication to stabilise Miss N’s mood or agitation, other than the recorded discussion with a consultant neurologist which considers the prescription of a low-level anti- depressant to act as a mood stabiliser to deal with the emotional fall-out of pre- menstrual tension.
63. In order to gain a fuller understanding of Miss N’s behaviours, the IRP said it reviewed the care records in the case file and the antecedent, behaviour, consequence (ABC) charts provided.
64. The IRP noted that in written submissions and at the Panel meeting, Mrs O has challenged that such records are not reliable and properly descriptive of her daughter’s behaviour. The Panel took the view that these are documents that provide accountability for the actions taken by care staff in discharging their responsibilities.
65. The IRP explained Miss N displayed a range of challenging behaviours that did require staff to intervene with a range of appropriate responses as outlined in her care plans. The care records and ABC charts indicate that these strategies were usually successful in mitigating any risks that such behaviours might present to self and others.
66. The IRP noted Miss N’s episodes of challenging behaviour were well understood and did constitute a level of risk to herself and others (e.g., hair pulling, lashing out at staff and hitting out at objects). The evidence indicated the staff team had a repertoire of strategies to manage this behaviour when it occurred in order to reduce its impact and mitigate any risks. It was evident that these strategies could not eliminate this behaviour.
67. The evidence did not indicate that the challenging behaviour was of such a frequency or severity that it posed a significant risk to self, others or property. The IRP explained there was no evidence that responses required actions which were outside of planned interventions, nor was there evidence that the challenging behaviour was of such severity, frequency or unpredictability that there was an immediate and serious risk to self, others or property.
68. Lastly, the IRP said that Miss N clearly benefited from a trained staff team who she knew and trusted and who were familiar with her and how to respond during episodes of challenging behaviour. Her behaviours were known and understood and as assessed by the behaviour psychologist, the strategies to manage this were appropriate to her needs. The interventions were effective in minimising risk, and it was also evident that any episodes of non-compliance were minimised. Therefore, the IRP concluded that Mrs N’s care needs were high in this domain.
69. From viewing the available evidence, we can see that Miss N did have periods of challenging behaviour. This mainly involved grabbing and kicking. There were also times where she could become agitated and upset.
70. The staff were able to expect these episodes, and intervene effectively when they took place, to minimise risks. However, we cannot see Miss N’s behaviour created such a risk that it was deemed serious enough to present a risk to herself, others, or property, that could not be readily responded to.
71. Behavioural charts were filled out when these incidents occurred to recognise any patterns in the behaviour, and what intervention took place to calm the situation.
72. The IRP explained the reasons for its views on Miss N’s needs in this domain at a detail that we would expect. We can see no indications of failings in how the IRP considered this domain, and how it concluded that this should be the right level of need, as the evidence correlates with the descriptor.
73. We think the IRP considered Mrs Douglas’s mobility needs in line with the National Framework.
Drug therapies and medication: Symptom control
74. Mrs O says that Miss N’s needs in this domain are high/severe.
75. The DST describes a high level of need in this domain as:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non- problematic to manage.
OR
76. Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.’
77. The DST describes a severe level of need in this domain as:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. Even with such monitoring the condition is usually problematic to manage.
OR
Severe recurrent or constant pain which is not responding to treatment.
OR
Non-compliance with medication, placing them at severe risk of relapse.’
78. Mrs O and her advocate explained that Miss N’s weighting in this domain is high, bordering on severe. It was explained that Miss N did not understand why she needed to take medication and that it requires staff to have special skills to deal with her.
79. Mrs O stated Miss N was not able to understand the need for medication and that she was non-concordant with her medication regime, placing her on the border of high and severe levels of need. In addition, the medication Tegretol (anticonvulsant medication) requires specialist monitoring.
80. The IRP said that Miss N’s weighting in this domain should be moderate.
81. The DST describes a moderate weighting as:
‘Requires the administration of medication (by a registered nurse, carer or care worker) due to:
Non-compliance, or type of medication (for example insulin), or route of medication (for example PEG).
OR
Moderate pain which follows a predictable pattern; or other symptoms which are having a moderate effect on other domains or on the provision of care.’
82. The IRP said it gave careful consideration to the evidence and submissions. In Miss N’s case due to her cognitive impairment and its impact on her capacity, she required her prescriptions to be obtained and administered as prescribed; she could not therefore be said to be in a position to act in non- concordance with her prescribed medication.
83. It is noted that she would sometimes push staff away and this could be regarded as non-compliance and therefore staff strategies were in place as discussed in the behaviour domain to manage this. The IRP did not find evidence that non-compliance was a recurring issue that impacted on the care staff’s abilities to ensure she received the appropriate medication.
84. Miss N received her medication via the PEG (a device used to put nutrition and medication directly into the stomach). It was noted in the care records that she was offered paracetamol for pain relief when required.
85. The IRP agreed that none of Miss N’s medication regime was so complex that it required staff to receive specialist training because there were risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects, which would have warranted consideration of a high or severe level of need.
86. The IRP therefore agreed Miss N required her medication to be obtained and administered via the PEG. There were incidents of non-compliance but there were managed by staff and there were no indications that these were of such concern that they impacted on the medication administration regime. Pain was managed via the use of paracetamol when required.
87. On this basis, the IRP concluded that Miss N’s needs were moderate in this domain.
88. From viewing the evidence, it shows that Miss N was on a number of medications that needed to be administered by trained staff, and that she was mostly compliant with this.
89. Miss N was given her medication via her percutaneous endoscopic gastrostomy (PEG) tube. We can see from the care plans and records that the staff were all able to give Miss N her medication via her PEG and were effectively trained to do so.
90. Miss N could occasionally grab her PEG when she was given medication, but the carers were able to use methods that helped Mrs N to either be calmed or distracted, so that medication could be given.
91. Whilst Miss N needed assistance to take medication, she was not at risk regarding the effectiveness or any side effects of the medication.
92. Our view is that the IRP recognised all the evidence surrounding Miss N’s and the ICB’s views. The IRP explained the reasons for its views on the levels of need for this domain. For this reason, we have seen no indications of failings in this part of the IRP’s process.
Four key characteristics
93. The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. The National Framework separates this test into four key characteristics: nature, intensity, complexity, and unpredictability. This test is used to establish if the quantity or type of a person’s care needs are more than what the local authority can provide. This indicates they have a primary health need, which in turn indicates they are eligible for CHC.
94. The National Framework sets out questions for the IRP to consider to help establish a person’s level of need. They are outlined in Practice Guidance 3 ‘When identifying a primary health need, how should the four key characteristics be approached?’ (PG3). (This is the section title in the 2018 version.) The National Framework is clear the questions it provides are not meant to be strictly applied and are there to guide the IRP’s considerations. We use these questions when we are looking at whether the IRP properly considered the four key characteristics of Mrs Douglas’s needs.
95. Mrs O disagrees with the IRP’s consideration of each of the four key characteristics.
Nature
96. The National Framework says nature should ‘describe the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.’
97. We can see the IRP considered the nature Miss N’s needs at a level of detail we would expect to see and with PG3 in mind. The IRP has focused on her individual day to day needs, and how these impacted her health and wellbeing.
98. The IRP listed Miss N’s medical conditions, and it has discussed each individual domain descriptor in lengthily detail, which is what we would expect. It also showed that it took into consideration Mrs O’s consideration of each domain.
99. It discussed the impact of Miss N’s needs, and its consideration that Miss N’s day-to-day support related to the majority of her living, and needed monitoring and care 24 hours a day.
100. The IRP weighed everything up before it concluded that the nature of Miss N’s needs was within the remit of the local authority and did not demonstrate characteristics of a primary health need.
101. From viewing the available care records, they show Miss N’s needs were not outside of that expected from the care setting that she was in.
102. The care staff could deliver the 24 hour care that Miss N required to keep her safe and well. The care notes and frequent care plans show that Miss N’s care could be anticipated when needed and planned accordingly, and without frequent changes to her care plans. Also, that Miss N’s needs did not rapidly increase throughout the review period.
103. Miss N received other support from other services such as SaLT, her GP and physiotherapist. Services such as this are within the remit of what the local authority can provide.
104. We are satisfied the IRP has considered Miss N’s individually and interactively, which is in line with the National Framework. Given the above, we do not consider there to be any indications of failings in the IRP’s decision-making process. The IRP’s reasoning is supported by the records and is in line with the National Framework.
Intensity
105. The National Framework says this characteristic ‘relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’). It sets out that assessors should look at how severe a person’s needs are, how often an intervention is and how long it takes, how many carers are needed, and whether the care is needed over several domains.
106. The IRP report shows that it considered the intensity indicator, in detail. It shows the panel understood that identified that due to Miss N’s conditions and overall cognitive impairment, this did mean that Miss N needed support with the majority of her day-to-day care. Despite this, it said that the level of care that was needed was not beyond what the local authority could provide.
107. It recognised that appropriate care was in place for Miss N’s safety, and carers were well trained to look after her. No additional training was required to be able to look after Miss N, and there were no indications Miss N’s care took longer than what was expected due to its intensity.
108. From the evidence that we have viewed, it shows that the frequency and length of care interventions, coupled with the level of skill, knowledge and experience required, created problems in delivering care successfully. No increased level of professional skill, training or expertise was required to keep Miss N safe and well.
109. We think the IRP’s decision about the intensity of Miss N’s needs was in line with the guidance set out in the National Framework.
Complexity
110. The National Framework says 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.’ It sets out that assessors should think about how difficult it is to manage the need and alleviate the symptoms, how the needs impact on each other, how much knowledge and skill is needed, and whether the person’s response makes it difficult to provide support.
111. We can see there is evidence of interactions between many of Miss N’s needs. For example, her cognition interacted with the majority of the other domains. However, the IRP explained, and we are satisfied with its finding, that there was no indication that Miss N’s needs were overly complex to manage, and this is supported by the evidence.
112. Miss N’s needs could be anticipated and planned accordingly, as we have seen from the detailed care plans which show detailed planning for each of her needs individually and interactively. However, these were only needed to be reviewed yearly.
113. The evidence supports this and shows that carers did not need to depart from their care plans to manage those needs. Also, no specialist care or interventions were needed. There were strategies in place to address any challenging behaviour, which were successful.
114. Despite the domain interactions, none of Miss N’s needs were above and beyond what was expected. Having considered the above, we find no indications of failings in the decision making of the IRP. We can find no evidence to suggest an interaction between the needs led to an increase in the level of skills or knowledge required to care for Miss N.
115. As such, we are satisfied the IRP has considered the complexity indicator in line with the National Framework and has based its decision on the available evidence.
Unpredictability
116. The final key characteristic of a person’s level of need is unpredictability. The National Framework defines it as ‘the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’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.’
117. The IRP acknowledged that when Miss N showed a level of challenging behaviour, there were actions which were known to the staff to respond to the behaviour.
118. The IRP explained that it did not find a that there was a high level of unpredictability, and that changes to her care plans were infrequent. Most needs were planned for or anticipated, and carers were able to manage her day-to-day care with planned interventions.
119. From viewing the care plans, we cannot identify that Miss N’s needs were or became unpredictable at any point during the review period. Staff were able to manage Miss N’s needs in line with the care plans, which did not need to be regularly reviewed or adjusted. We have seen no evidence that Miss N was so unpredictable that her care became difficult to manage and therefore the records support the IRP’s rationale.
120. We find the records support the IRP’s rationale that there were no sudden or critical changes in the care responses that were required, and skilled interventions were not needed. The panel stated there was no unpredictability regarding Miss N’s care.
121. Based on the above consideration, we find there is no evidence to indicate failings in the decision making of NHSE. The panel considered this key characteristic in line with the National Framework. It considered the records to identify if any interventions were required.
122. The IRP explained its consideration of each indicator in depth, as well as looking at and acknowledging Mrs O and her advocates views.
123. We find the IRP’s conclusions are in line with the National Framework and are supported by the records
Conclusion
124. The IRP’s rationale for its decisions is in line with the National Framework and refers to the relevant evidence throughout. We are satisfied the IRP has fairly considered the comments and observations of Mrs O and the ICB in coming to its final decision.
125. We appreciate the time and effort that Mrs O has taken to bring the complaint to us. While we did not find indications of failings in the eligibility consideration, we understand the distress and frustration of pursing a CHC complaint. We were sorry to learn of her concerns and hope our explanations provide reassurance that the right process has been followed.