4. Mr P complains about NHS England’s IRP decision on 9 May 2023 to uphold the Integrated Care Board (ICB) that Mrs P was not eligible for continuing healthcare (CHC) funding from 17 August to 12 October 2020.
5. As a result, Mrs P had to fund her own care. Mr P would like NHS England to review this decision.
6. Mrs P had Alzheimer’s disease (a type of dementia) and other health conditions. She moved into a nursing home in July 2019 when she needed more care to meet her needs. Alzheimer’s disease affected her understanding of her need for support and her awareness of where she lived and why. This meant she could become upset and distressed about other people living with her in the care home, and at staff trying to meet her daily needs, for example providing personal care and support with meals.
7. A CHC checklist (a screening tool for assessment) was completed on 22 September 2020. It decided Mrs P needed a full assessment for CHC.
8. On 12 October 2020, the ICB completed a decision support tool (an assessment tool for CHC). It found Mrs P not eligible for CHC. A local resolution meeting followed, which upheld the decision.
9. Mr P asked for an independent review. An IRP was first held on 28 April 2022 and a second panel was held on 9 March 2023. This is not usually required, but there were process issues which meant a second panel was necessary. The second IRP upheld the previous decision that Mrs P was not eligible for CHC. The IRP looked at whether Mrs P should have been eligible for CHC between 17 August and 12 October 2020.
13. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this, and we have not found any indications that something has gone wrong.
14. 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 (2022) when it considered whether Mrs P was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHS England should follow when considering if someone is eligible for CHC.
15. 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 find the IRP did not follow the National Framework when it made its decision.
16. The IRP reviews if the CCG should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the CCG’s procedures when it was coming to its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the CCG made a mistake, it can:
• recommend the CCG reconsiders if the patient had a primary health need, and • recommend the CCG addresses any procedural faults the IRP identified.
17. When we look at a complaint about an IRP, we consider if it considered all the relevant information when it made its eligibility decision, and how this was explained.
Did the IRP clearly explain how it reached its decision?
18. When we look at a complaint about an IRP, we determine whether it considered all the relevant information and provided evidence-based rationales for each domain when it made its eligibility decision. We focus only on the disputed domains.
19. Mr P agreed with how the IRP considered all the domains except behaviour. He said Mrs P had a severe level of need. The ICB said Mrs P had a high level of need and the IRP agreed with it.
20. The DST says a high level of behaviour need is:
‘“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 risk. Compliance is variable but usually responsive to planned interventions’
21. The DST says a severe level of behaviour need is:
‘“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’
22. The IRP considered the care home’s risk assessments and incident reports. The IRP noted some incidents recorded in the daily logs did not have separate incident reports and gave examples of this in October 2020. Mrs P had a behaviour care plan in place. The care home also referred Mrs P to the Older Peoples Mental Health Team (OPMHT) for support from a community psychiatric nurse (CPN) due to daily challenging behaviour between 29 September and 4 October 2020.
23. We considered whether the CPN reviews needed to be exhausted to consider Mrs P’s needs. Our nursing adviser told us the evidence showed she lived in the care home from July 2019 and had been known to the mental health team for behavioural needs since October 2019. Increased behavioural needs had been reported in August 2020 when the CPN was involved, but it was otherwise well established that Mrs P’s behaviour could be challenging. Therefore, there was no evidence to support delaying the DST in October 2020 in line with the National Framework.
24. Mrs P was physically and verbally aggressive, and the IRP noted she required medication and 1:1 supervision at times to manage this behaviour. Her family said it was asked to remove a ring due to risk of injury to others. Examples were given of police involvement when she held a staff member against a wall. The IRP could not see any recorded information about the police involvement, but the family believed this was around the time of the DST (which was 12 October). She also attacked another resident without warning, requiring 1:1 supervision to reduce further risk to residents.
25. Mr P also said Mrs P would inappropriately remove her clothing. There is evidence of this on 19 September when she locked herself in another resident’s room, removed her clothing, and became distressed when staff tried to persuade her to leave the room. We could not see other examples of this behaviour in Mrs P’s daily care records.
26. The care home used a medication called lorazepam to manage Mrs P’s behaviour. It is used to treat anxiety, agitation and sleep problems. It was administered on a ‘PRN’ (pro re nata) basis, meaning ‘as needed’. Her DST said a regular dose was given most mornings, but the IRP could not see evidence of this. The IRP said risperidone was administered twice a day, which is an antipsychotic medication used to treat aggression in people with Alzheimer’s disease.
27. The OPMHT said staff needed to document any behaviour that meant lorazepam was administered. Due to its side effects, such as drowsiness, weakness, and dizziness, it increased Mrs P’s risk of falls so her blood pressure also needed to be monitored after each administration. It documented several falls during the period being assessed. We can see the IRP considered this.
28. The OPMHT’s plan in October 2020 also suggested staff to speak to the family about Mrs P’s likes and dislikes to provide positive distractions and avoid any triggers of negative behaviour. The IRP said care plans reflected this by telling staff to provide reassurance in response to Mrs P becoming anxious or distressed. The review was scheduled to be completed after the DST.
29. The IRP said Mrs P was ‘verbally aggressive in the main’ but there were references to threats of physical harm to staff and other residents in the incident reports. It provided several examples of her challenging behaviour to evidence this. The IRP could not see evidence that she was beginning to hit or attack residents, and the evidence appears to support that staff were able to de-escalate any perceived threats of physical harm with reassurance and distraction. We appreciate Mr P referred to a police incident, but we could not see evidence of this event and as a single event, it does not reflect the level of need Mrs P had on a day-to-day basis.
30. Medication, reassurance and occasional 1:1 supervision was needed to meet Mrs P’s behavioural needs. The IRP said it could not see evidence to suggest 1:1 support was needed on a regular basis, but we could see 1:1 referred to as a reactive risk-reducing measure in many of the incident reports for the period in question. The records said her compliance was variable, but she usually responded to interventions.
31. There is a care plan titled ‘distressed behaviour, negative response to intervention, becomes suspicious of others’. This plan outlines the distraction and reassurance techniques used to support Mrs P when she was distressed, but there were no specific triggers documented in this plan. Similarly, a care plan for mental health and cognition says Mrs P could ‘become anxious and distressed and hit out or throw things – at times no trigger can be discerned’. There is a reference to being in her personal space being a trigger.
32. A care plan for medication says Mrs P could be ‘paranoid’ about medication and staff trying to poison her. Covert medication was agreed, but we can see a staff member referred to her noticing the taste of medication in her food and drink, or being suspicious of this. They say also impacted on them giving her medication to reduce her agitation. The IRP referred to the CPN saying it was not always clear why lorazepam was administered, but this appears to be advice about improving record keeping rather than suggesting lorazepam was not appropriate for Mrs P.
33. These plans all appear to reflect the type of incidents reported. The IRP said planned interventions were effective in minimising but not always eliminating risks. We can see the staff used pre-established interventions to try to provide reassurance or distraction to Mrs P. This appeared to vary in success but Mrs P was often responsive, if after one or two attempts to distract and/or reassure her.
34. Whilst Mrs P’s challenging behaviour is frequently described as ‘unpredictable’ by staff, the records indicate they knew how to approach her to de-escalate any incidents and support Mrs P. They did so without any notable specialist skill or response techniques, using distraction techniques and reassurance. The only exceptional incidents that could be described as outside of the range of planned interventions are those which reportedly required police intervention. But we were unable to confirm when or why this happened as it was not recorded in any evidence. It also appeared to be a standalone event and overall, Mrs P did respond to planned interventions on most occasions.
35. The IRP concluded Mrs P’s challenging behaviour was of type or frequency that posed a predictable risk to self, others and property. We think it weighed up all the relevant evidence before it reached this decision.
36. We cannot see indications of a failing with how the IRP considered the evidence. We understand there is disagreement about how challenging Mrs P’s behavioural needs were. We appreciate Mrs P was frequently distressed because she believed others were in her home and using her belongings. We understand this would have been very worrying for her family.
Key characteristics consideration
37. Mr P complains the IRP has not correctly considered the characteristics of Mrs P’s needs.
38. The IRP said Mrs P needs totalled one severe need, four high needs, three moderate needs, and one low need. Mrs P had no needs in three domains. There was one disputed domain, behaviour. If changed to reflect Mr P’s views, that would have resulted in two severe needs (and subsequently one fewer high need).
39. Paragraphs 36 to 38 of the DST guidance explains what needs to be considered when deciding if someone has a primary health need and is therefore eligible for CHC funding.
40. The DST guidance says a clear recommendation (and decision) of eligibility for CHC would be expected in the following cases (paragraph 36):
• A level of priority needs in any one of the four domains that carry this level • A total of two or more incidences of identified severe needs across all care domains.
41. Whilst the DST suggests this would result in a ‘clear recommendation (and decision) of eligibility’, the DST guidance also says the interactions between needs in different care domains, and the evidence from risk assessments should be considered when determining whether someone is eligible for CHC. It says whether an individual 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.
42. This means whether Mrs P’s behavioural needs were deemed severe or high, the IRP also needed to consider the nature, complexity, intensity and unpredictability of her needs to determine if she was eligible for CHC.
43. 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 (PG) 3, When identifying a primary health need, how should the four key characteristics be approached?’ (PG 3). 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 P’s needs.
Nature
44. The National Framework says this characteristic 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.’
45. The IRP outlined Mrs P’s needs resulting from her medical conditions. It said that because of those needs, Mrs P needed to live in a safe and supportive environment to monitor her and provide care as required. Each area of need according to the domains was considered, along with what type of intervention was required to meet the need. For example, Mrs P was said to need help from staff to meet her personal care needs, but she was able to exercise some choice around what clothing she wore. The IRP noted there was suggestion that Mrs P could undertake some personal care tasks herself, but Mr P provided evidence to suggest this was not accurate and the IRP accepted this.
46. The IRP also referred to Mr P’s written submissions, such as considering that Deprivation of Liberty Safeguards was in place (DoLS is a legal process to authorise the constant care and supervision of someone who lacks the mental capacity to make choices about their own care.).
47. There was evidence that the IRP considered the level of skill needed to meet Mrs P’s needs. For example, when looking at Mrs P’s medication needs, the IRP considered the frequency of medication being needed to manage her behaviour, and the need for reviews from the Older People’s Mental Health Team (OPMHT) and her GP. The IRP did not identify any ‘consistent or prolonged’ input from staff or that any specialist training was required. It referred to suitable training for the administration of Mrs P’s medication, but it concluded that this was ‘no more than incidental or ancillary’ to the provision of accommodation which social services are under a duty to provide.
48. Mr P’s representative said it was incorrect for the IRP to refer to any ‘particular training’ of staff. PG 3 outlines guidance questions for each characteristic. For nature, one question is ‘Is there particular knowledge/skill/training required to anticipate and address the need? Could anyone do it without specific training?’. Whilst the IRP does not have to answer every question in PG 3, these questions are intended to guide the discussion about the person’s needs and the type or quality of the interventions to meet them. The IRP considering the skill of staff is not an indication of a failing, but evidence that it considered the guidance questions.
49. There are no indications of any failings with how the IRP considered the nature of Mrs P’s needs. It summarises her daily needs without emphasis on her diagnoses, and how staff typically support her, including external professionals. We cannot see any indications of her needs being marginalised due to how her needs were being managed. Staff needed to anticipate all her needs, and she still faced risks, for example with falls, communication (such as pain), and expressing her emotions which would result in aggressive behaviour,
Intensity
50. The National Framework says intensity ‘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.
51. The IRP summarised the domains in which Mrs P had needs, and what level of need it had determined from the available evidence.
52. The IRP considered the amount of time Mrs P’s needs took to meet, as well as the number of staff. Mrs P could be resistant to care, and it was noted that staff used a ‘retreat and return’ approach with her if needed. The IRP said there was no evidence of Mrs P needing more than two staff to meet her needs, or a particularly long amount of time. It said there was no evidence of unplanned interventions being required, and that her behaviour was not a barrier to providing the care she needed.
53. The IRP considered Mrs P’s behaviour in more detail, as it accepted her behaviour could be challenging. The IRP noted the care plans said there was a risk of physical and verbal aggression, but it considered this was mainly verbal. The IRP went into detail about how her verbal aggression presented itself, for example, being accusatory about her things being taken.
54. The IRP considered the impact on Mrs P’s needs, particularly regarding medication. A covert medication plan was in place for when it was required. The IRP noted she could be suspicious of people poisoning her.
55. The IRP said reassurance, distraction and guiding Mrs P to another room appeared to usually deescalate any incidents of aggression. It noted 1:1 time was regularly scheduled for the morning on the advice of the OPMHT.
56. The IRP concluded there was no intensity of behavioural need in the context of CHC. It said there was no evidence she needed extra care to support her on an ongoing, extended and dedicated 1:1 basis. It described the support as ‘intermittent’ and ‘ad-hoc’ from care staff, because Mrs P did not always need this support.
57. The care home’s incident forms show Mrs P often needed 1:1 attention or monitoring after any incidents of verbal or physical aggression towards staff or other residents, such as 30 minute checks. It has already been noted that the OPMHT recommended regular 1:1 time in the morning to try to reduce the risk of Mrs P becoming agitated or aggressive towards people, by keeping her occupied. The IRP concluded there was no evidence of Mrs P needing this care on an ‘ongoing, extended and dedicated 1:1 basis’, but it did appear to be recommended as part of the risk reduction each morning to try to prevent Mrs P getting agitated and aggressive towards other people.
58. We could also see staff had documented about the effectiveness of medication. For example an incident form dated 22 August 2020 said staff noted Mrs P seemed to detect covert medication due to the taste and became suspicious of poisoning. On 18 September 2020 staff noted how lorazepam did not seem to affect Mrs P.
59. More than one staff member may not have been required to monitor or distract Mrs P at any given time. But there is a sense from the records that staff needed to be aware of her whereabouts and interactions with other residents to promptly de-escalate what appeared to be sometimes a sudden change in behaviour that did not always have obvious triggers. We would expect this to be considered further in the unpredictability characteristic.
60. The IRP summarised Mrs P’s other care needs in a similar way. We considered the representative’s written submissions and cannot see any specific challenges to the intensity characteristic, other than the reference to the chart within the National Framework at Figure 1. They suggest this shows the higher level of need in the domains, the more likely the unpredictability and intensity of the needs. The representative also emphasised that needs should be considered in combination or ‘totality’.
61. There are no indications of failings in how the IRP considered the intensity or duration of Mrs P’s needs in line with the National Framework. The consideration reflects the evidence in her care records, and we cannot see any evidence of marginalised needs.
Complexity
62. 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’).
63. The IRP said cognitive impairment was a ‘core issue’ interacting with Mrs P’s other areas of need. This was particularly when understanding her basic needs and how to meet them, and what risks there were to herself if she did not meet them. Staff needed to anticipate all her needs and offer support to meet them.
64. It also identified other interactions of needs, such as skin integrity, continence, and nutrition. Mrs P was incontinent, but she ate well and was not nutritionally at risk, and her skin remained intact. The IRP said this interaction was not complex to monitor. It is important to note that the National Framework does not require needs to interact to be considered complex, and a single need could amount to complexity.
65. There was consideration of whether Mrs P’s behaviour was complex. The IRP looked at the way staff responded to Mrs P’s behaviour, which was to distract her and guide her to other rooms. It suggested this resolved her aggressive behaviour. Incidents recorded in the care records often referred to her hitting or attempting to hit staff. The IRP said it did not consider Mrs P’s behaviour to be complex. There is no evidence of any concerns raised by staff about risk to themselves because of difficulties providing her care.
66. The IRP considered medication as a separate issue to Mrs P’s behavioural needs. The evidence showed the OPMHT recommended the monitoring of Mrs P’s blood pressure when lorazepam was administered as needed to manage Mrs P’s behaviour. This was because it increased the risk of falls due to its possible impact on blood pressure. The IRP did not consider the relationship between using lorazepam to manage Mrs P’s behaviour, and the medication increasing the risk of falls, as a potentially complex need.
67. The IRP also said Mrs P’s medication regime was not complex, although there was a need for covert medication. It said there were infrequent instances of Mrs P’s medication administration being unsuccessful. The evidence showed staff were concerned about non-compliance, and medication seeming to be ineffective. The OPMHT was involved in reviewing Mrs P’s behavioural needs and suggesting approaches to help manage her behaviour. Medication could have been adjusted as part of these reviews if it was felt to be appropriate.
68. The IRP concluded that Mrs P’s needs were not complex to meet. It could not see evidence of staff needing an increased level of knowledge to support her. The care provided to her was at a level that was expected in a care home environment, with support from the OPMHT and GP.
69. There are no indications of failings in how the IRP considered the complexity of Mrs P’s needs in line with the National Framework. The consideration reflects the evidence in her care records, and we cannot see any evidence of marginalised needs. Mrs P had challenging behavioural needs, but the evidence showed she was supported with the level of care expected in a care home with some ad-hoc input from other professionals such as the OPMHT and GP, and her behaviour was not a barrier to staff meeting her other needs.
Unpredictability
70. 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.’
71. The IRP said Mrs P’s care plans had needed no significant changes and they were meeting her needs. It considered whether staff were able to anticipate when her needs might arise, and for the most part staff did anticipate her needs. It said there was some deterioration over time as would be expected with a dementia diagnosis, and this was not rapid, unstable, or unpredictable.
72. There was consideration about the unpredictability of Mrs P’s behaviour. The IRP found she was often noted to be ‘calm and accepting’ of support but could also have incidents of verbal aggression towards other residents and staff.
73. It said the fluctuations in behaviour did not indicate unpredictability as defined by the National Framework. It said the skill and knowledge of staff required to respond to Mrs P’s behaviour was not above the level of skills and knowledge required from care staff within her care home. The evidence showed her needs were addressed as they arose with no consequences arising due to unpredictability.
74. We considered the evidence about Mrs P’s behaviour. We noted that care staff often recorded the incidents as having no known cause or trigger, and regularly used the word ‘unpredictable’ to describe her. Whilst there were some obvious patterns of behaviour, such as often being in the dining room for mealtimes when she became agitated, we could also see incidents outside of mealtimes and in other locations of the home which could be described as standalone incidents. For example, there was an incident where she entered another resident’s bedroom, locked the door and removed her clothing.
75. It is important to note that even though staff may not have been able to predict when these incidents would happen, it was predictable that they would at some point and, importantly, how care staff should respond to them. Mrs P’s daily care records show staff often provided her with 1:1 care or 30 minute observations after incidents of heightened anxiety and verbal aggression, to ensure she did not return to people she was directing abuse towards. Staff needed to administer PRN (as needed) medication (lorazepam) as a last resort, due to not being able to calm Mrs P down. Whilst we understand the staff had at times recorded medication could have no effect, there was no evidence of incidents escalating to a point where staff could not manage the situation and prevent harm to Mrs P, other residents, or staff. They relied on distraction and reassurance to reduce her anxiety or distress.
76. Mr P’s representative highlighted that the information in the DST noted Mrs P’s behaviour was recorded as ‘still difficult to manage despite all steps from the CPN (community psychiatric nurse) and GP being followed as well as administering all prescribed medication’ in October 2010.
77. Whilst these incidents were undoubtedly upsetting for Mrs P and other residents and challenging for the staff, they were able to successfully de-escalate these situations with encouragement, reassurance, and distraction techniques in line with their usual behaviour management approaches. There is no evidence of difficulties in meeting her care needs because of challenging behaviour, and on most days, she was settled and accepting of support.
78. The OPMHT also noted the PRN medication increased the risk of falls and recommended checking Mrs P’s blood pressure if it needed to be administered. The IRP considered this when summarising the nature of her needs.
79. The IRP considered the consequences of Mrs P’s behaviour not being managed or what harm could arise to herself or other people if staff were not immediately available to respond to incidents. We could see the IRP considered if there was a risk of her getting into conflict with other people and, as a result, potentially harming them or being harmed herself in retaliation from other residents. We considered Mr P’s submission to the IRP that there was a police incident following Mrs P assaulting another person, but we could not confirm whether this was within the period of care under consideration by the IRP, and we were satisfied that this incident was not a reflection of her behaviour overall when considered alongside the daily care records.
80. As with nature, Mr P’s representative raised concern about reference to the skill or knowledge of staff when considering the unpredictability of Mrs P’s needs. PG 3’s guidance questions for considering unpredictability include ‘to what extent is professional knowledge/skill required to respond spontaneously and appropriately?’. It is not a failing for the IRP to consider the skill and knowledge of staff, and the National Framework expects that it should do this, being mindful of the well-managed needs principle so as not to marginalise any needs. The IRP report is very clear about Mrs P’s behavioural needs, and there are no indications of her needs being marginalised in the report.
81. After careful consideration, we think there are no indications of failings in how the IRP considered the unpredictability of Mrs P’s needs. We can see Mrs P’s needs could be challenging for staff to meet because of her lack of understanding why staff needed to do this and why other people lived in her home with her, but they were able to meet her needs despite this.
82. In summary, we have not identified any failings in the IRP’s consideration of Mrs P’s eligibility for CHC funding. We were able to see a clear consideration of her needs based on the available evidence. This included Mr P’s submissions. We appreciate disagreements about the interpretation of the domains and key characteristics are common in the CHC process, but we are satisfied that the IRP’s rationale for each disputed part of the consideration is evidenced by the care records.
83. We appreciate it is difficult to talk about a loved one’s deteriorating health, but it is of great importance to us that people share their concerns with us if they believe something has gone wrong. We want to thank Mr P and his family for taking the time to share their concerns about this IRP decision so we can be reassured it has followed the National Framework.
1. We have carefully considered Mr P’s complaint about NHS England’s independent review panel’s (IRP) continuing healthcare (CHC) eligibility decision.
2. After careful consideration of the evidence, we have seen no indication that anything went wrong with the IRP’s decision about Mrs P’s eligibility for CHC funding.
3. The CHC process requires in-depth discussions about a person’s needs, and we know it can be very upsetting for families to need to repeat this information to us after an already lengthy CHC appeals process. We do not underestimate how challenging this is, and we appreciate the time and effort Mr P has taken to bring his complaint to us.