NHS England Midlands and East

3. Mrs P complains NHSE IRP upheld the ICB’s decision that her father Mr A was not eligible for CHC funding in May 2023.

4. Mrs P disagreed with the IRP’s consideration of the behaviour domain and the four key characteristics when deciding if Mr A was eligible for CHC funding.

5. Mr A’s family have been left responsible for care fees they think the NHS should have paid.

6. She would like the IRP to repeat her father’s assessment and recognise he was eligible for CHC funding.

7. Continuing healthcare is a package of health and social care funded by an integrated care board (ICB) for people who have a primary health need. The ICB decides if a person has a primary health need by doing an assessment. A multidisciplinary team (MDT) considers their needs using a decision support tool (DST). If the ICB decides the person does not have a primary health need, so is not eligible for CHC, the person or their representative can appeal the decision. This is first locally to the ICB and then to NHSE. NHSE may organise an IRP to consider the ICB’s decision.

8. Mr A lived in a nursing home. He had vascular dementia and had suffered strokes. The ICB arranged a full CHC assessment for 30 May 2023. Mrs P appealed the decision, locally and then to NHSE. NHSE held an IRP on October 2024. It upheld the ICB’s decision. Mr A sadly died February 2026.

Behaviour

18. Mrs P considered her father’s needs in this domain were high to severe. The IRP weighted this domain as high.

19. Mrs P says around the time of her father’s assessment (May 2023) there were instances when he was grabbing, threatening or attacking care staff. His agitation often manifested with aggression and while two carers often met his needs, there was a time a carer used the alarm button to call for added support. He also expressed negative behaviours toward other residents, was often uncompliant with support and posed a risk himself.

20. The IRP acknowledged a small number of incidents where Mr A had threatened and hit staff with his Zimmer frame. It noted he did spend time in communal areas but was mainly in his room. It found carers did not record they could not manage Mr A’s behaviour, and his behaviour was not so severe that it needed medications (blockers or sedatives for example). One or two carers were routinely enough to meet his needs.

21. The DST descriptor for a high level of need in this domain 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 risks. Compliance is variable but usually responsive to planned interventions.’

22. The DST descriptor for a severe level of need in this domain 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.’

23. From the records we can see that at the time of the assessment, Mr A had severe cognitive impairment which had a ripple effect on his overall needs. While his behaviours did pose a risk to himself and others, there were few significant incidents. When they did arise, carers promptly managed or de-escalated the situation, so it generally did not interfere with administering support or care.

24. To weight this domain as severe, the IRP would have needed to see Mr A’s behaviour generally or consistently posed significant harm to himself or others. Metrics used to consider this may be how many skilled staff he needed, the force Mr A can reasonably exert, if he needed medication to manage his behaviours or how much, if any added support he needed that was outside of his planned interventions.

25. When we consider the records, we do not think the IRP made a mistake here. Mr A’s records show he could become confused, frustrated and aggressive when staff attempted care interventions, which led to him displaying challenging behaviours. The risk of harm could be reasonably predicted with his cognitive decline. To reduce it, the carers used reassurance and communication strategies such as redirecting his attention or explaining the care intervention. This gave Mr A the opportunity to calm down or diffuse the situation enough for staff to continue providing support.

26. While Mr A’s behaviours posed a risk and there were instances where he caused minor harm, we think the IRP adequately captured the severity of this when it weighted this domain high. We do not think the instances of this were so prolonged, frequent or significant over the review period to suggest a higher weighting was more appropriate. Mr A was increasingly resistant to support, but carers could predict and manage most instances within his routine care plan. While there was a more high-level incident, this was not reflective of his day-to-day needs at the time of the assessment. Mr A exhibiting needs in this domain that could not be entirely mitigated or eliminated, does not necessarily mean his needs here were severe. We think the IRP made an evidence-based view on Mr A’s patterns of behaviour.

27. After considering the evidence in Mr A’s records, we do not think the IRP made a mistake here. We think its decision that he had a high level of behaviour need is reflected in the evidence and DST descriptors.

Four key characteristics

28. Mrs P did not agree with the overall conclusion her father was not eligible for CHC. So, we will look at how it considered the ‘primary health need’ test.

29. The IRP applies an eligibility test to help it decide 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 suggests they have a primary health need, which in turn indicates they may be eligible for CHC.

30. The National Framework sets out questions for the IRP to consider helping 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). 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 considered the four key characteristics of Mrs B’s needs.

Did the IRP appropriately apply the four key characteristics?

Nature

31. 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 needed to manage them.’

32. Mrs P says her father could not reliably communicate his needs and his challenging behaviour meant he was often uncompliant with care. She says his deterioration was proven by his increased level of management. He was often suicidal, confused and had behavioural and mobility issues which put him at higher risk to himself and others. The overall interactions of the domains should have demonstrated he had a primary health need.

33. The IRP found Mr A’s needs could generally be predicted so were routinely met within his care plan. It acknowledged his severe cognitive function affected his ability to reliably communicate and he did not understand to what extent he needed support, so carers often had to anticipate his needs. It also acknowledged his several existing comorbidities however it found the interactions of his needs were not complex or difficult to manage.

34. The IRP found the nature of Mr A’s needs did not suggest a primary health need. We do not think it made a mistake here. It took information for its discussions about each domain and recognised the level of skill needed to keep Mr A safe and well. It found the local authority could look after him with the support of community services, such as his GP.

35. We acknowledge there were some aspects of care, such as his communication, cognition, behaviour and psychological and emotional needs that needed more attention. His GP prescribed medications and made necessary referrals, but the records show the care home could routinely suitably meet his needs without specialist support. Despite his high risk of falls Mr A could independently mobilise, feed himself and had no significant pressure sores or lesions.

36. Mr A’s records show he had low moods and occasions where he was non-compliant with care. But in many of these instances his carers also described him as being ‘content’, having turned down non-high-risk items such as non-essential drinks or outings. At other times he declined medications (ointments and creams), but it did not prevent them from easily being administered. We also accept there were occasions where he declined activities and was unhappy or agitated but again carers anticipated and managed this routinely.

37. We do not doubt Mr A’s carers needed to be skilled to keep him safe and well and our decision here should not take away from this. When we have looked at Mr A’s records, we cannot see his carers needed any specialist skills or that his care could not be adequately met by the care home. Mr A was compliant with his care interventions for most of the review period.

38. We think the IRP acted in line with the guidance set out in the National Framework when it considered the nature of Mr A’s needs. We do not think it made a mistake here.

Intensity

39. The National Framework says this characteristic ‘relates to both 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’)’.

40. Mrs P says the IRP did not properly consider the severity of Mr A’s needs here and it did not explore how often he needed support with his continence or skin integrity. He was doubly incontinent and often struggled with constipation which required monitoring. It did not consider his significant risk of falls considering he had fallen eight times in the year before the full assessment. His moods and behaviour also posed serious harm to himself and others which meant care interventions generally took longer.

41. The IRP found most of his care could be delivered in a planned way and additional support was provided by the GP in line with the Care Act. It acknowledged he needed intermittent monitoring throughout the day, and his cognitive and communication difficulties meant he primarily relied on support from one carer. Staff supported with his personal care and there was an occasional incident that needed support from more carers. These instances were infrequent and he generally did not need specialist support.

42. The records are consistent with the IRP’s findings. We can see care could be delivered by the local authority following a care plan that has been assessed, planned and monitored by registered nurses and carers with his GP only consulted when needed. While Mr A did have two notable behavioural incidents, infrequent involvement by added staff or a GP or specialist would not amount to a primary health need.

43. When we considered the evidence against the framework, the report shows the IRP looked at the interactions of Mr A needs across several domains and did not see evidence his needs presented in such a ‘intense’ way that there was a primary need here. It found Mr A had moderate continence and skin needs but they were not so severe that it could not be managed routinely by staff in the care home.

44. The IRP considered Mr A’s risk of falls and noted he needed to be monitored every 30 minutes. He had been referred for assessment but that this appeared to be effectively managed and mitigated. He fell eight times the year before the assessment but only once in the prior six months. Mr A was also able to mobilise and had a stable weight, this is consistent with his records.

45. The IRP considered how carers were often able to reassure and communicate with Mr A to get him to cooperate with care interventions when he was uncompliant and how this alone was often effective. The overarching impression from the time of the assessment was that one carer could often meet his needs. While he had different needs, the interactions were not intense enough to suggest they could not be met within his care plan or required especially skilled staff to implement it.

46. The IRP found the intensity of Mr A’s needs did not show a primary health need. We have looked at the information in its report, and we cannot see it made a mistake here. We think it considered the evidence and acted in line with the National Framework.

Complexity

47. The National Framework says complexity ‘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.’

48. The report shows the IRP looked at how difficult it was for Mr A’s carers to manage his needs. It explained the evidence suggests his care workers could routinely keep him safe and well without intervention from specialists. It acknowledged Mr A’s cognitive needs were progressive and affected all aspects of his daily care. It explored the communication tactics carers would use to diffuse or redirect instances when he became agitated. It discussed his increased risk of harm and falls, and the measures implemented in his care plan to mitigate this.

49. The report evaluated how Mr A’s needs interacted with each other and whether this made it more difficult for his carers to keep him safe. It acknowledged an interaction between his cognition, communication, behaviour and mobility. It found each of these domains had a severe to high level of need, but the interactions were not complex to manage. We think this is supported by the information in Mr A’s care plans.

50. We can see the IRP considered all the question prompts in the National Framework. It thought about how complex his needs were. It acknowledged the impact of his poor cognition on his other needs and set out the monitoring staff needed to do to keep him safe. It saw these were interactions that did not require enhanced skills or knowledge and most of his needs could be anticipated. We cannot see it made a mistake in how it considered this. We think it acted in line with the National Framework.

Unpredictability

51. The National Framework defines unpredictability 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 prompt care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.’

52. We have already seen Mr A needed others to meet his daily activities and his mobility, skin, weight and mental health was monitored. We have also seen how Mr A displayed some challenging behaviours and how carers navigated this.

53. This key characteristic relates to whether care workers can anticipate when a care need might arise. It looks at whether the level of need changes and whether the person is unstable. It also looks at whether a skilled response is needed at very short notice, the frequency of this and how much monitoring is needed.

54. The IRP clearly had this guidance in mind when it looked at the unpredictability of Mr A’s needs. It saw his care plans were consistent and did not need regularly changing or regular input or oversight from skilled staff or specialised care, which would be a strong indication of unpredictability. Any infrequent challenging behaviours that arose were promptly and adequately met by the care home.

55. It acknowledged he had progressive but not rapid cognitive decline which impacted his daily care. Mr A’s general health was not fluctuating, nor was he generally declining rapidly at the time of his assessment. Overall, care workers did not need to employ spontaneous, skilled responses to manage this care.

56. The IRP summarised this part of its report saying Mr A was generally compliant and care workers appeared to be able to manage his needs in line with consistent care plans and with planned interventions. We think the evidence in his records supports this. We cannot see the IRP made a mistake here.

57. We appreciate Mr A was entirely dependent on the care he received, and we do not wish to undermine the challenges his care staff faced in meeting his needs, especially in relation to his mobility, communication, behaviours, psychology and cognition. We fully understand why Mrs P asked us to look at this and we can see why she highlighted the points she did. We do not wish to take away from this with our decision.

58. We are satisfied there are no indications of failings in how the IRP considered Mr A’s needs and how it applied the primary health need test.

1. We have carefully considered Mrs P’s complaint about how NHS England’s (NHSE) independent review panel (IRP) considered the local integrated care board’s (the ICB) decision not to give her father, Mr A, NHS funded continuing healthcare (CHC). We think NHSE acted in line with the National Framework for CHC when it considered Mr A’s needs.

2. We are sorry to read Mrs P’s account of her father’s health, and we can clearly see the impact his dementia had on him. We appreciate the amount of time Mrs P has dedicated to taking his complaint through the NHS appeals procedure and then bringing it to us. We also appreciate the costs of her father’s care and the impact this had on his estate.