NHS England

3. Mr C complains that NHS England made the wrong decision that his mother, Mrs I, was not eligible for NHS continuing care (CHC) in June 2018 and July 2019. He says NHSE’s IRP and desktop review did not properly consider: • the behaviour domain • the complexity and intensity of his mother’s needs, which he feels demonstrated a primary health need • the well managed needs principle.

4. Mr C says NHS England’s decision was very disappointing and meant his mother has been financially disadvantaged as she had to pay for her own care.

5. Mr C wants NHS England to reconsider its decision.

6. Continuing healthcare (CHC) is a package of health and social care that is funded by the NHS for people who have a primary health need. ICBs manage CHC and decide if a person has a primary health need by doing a CHC assessment. A multidisciplinary team (MDT) will use a decision support tool (DST) which looks at a person’s care needs in 12 areas. These are what we refer to as the domains. Each domain is broken down into weightings that range from ‘no needs’ to ‘high’, ‘severe’ or ‘priority’, depending on the domain. The DST describes each weighting to guide clinicians. We call these the descriptors. The MDT also considers the four key characteristics of the person’s needs.

7. If an ICB decides the person does not have a primary health need and is therefore not eligible for CHC, the person or their representative can appeal this decision. This is first to the ICB and then to NHS England, which may decide to arrange an independent review panel (IRP) to consider the ICB’s decision.

8. Mrs I’s medical history shows that she has both physical and mental health conditions, including dementia.

9. She moved into an assisted living complex in September 2017, then into a care home in July 2018. In September 2019 she moved temporarily to another care home, and to a further care home in September 2020 where she currently resides.

10. During this period, Mrs I had two CHC assessments, neither of which found her eligible for CHC. The first was in June 2018. Mr C appealed the decision and a local resolution meeting took place in January 2019. The ICB documented that it had been very difficult to reach a conclusion. It recommended that Mrs I should have another assessment with a registered general nurse and a registered mental health nurse, and a social worker. That happened when she had the second assessment in July 2019. While this assessment did not find her eligible for CHC, it found she was eligible for NHS funded nursing care (FNC). This is where the NHS pays for the nursing element of care provided in a home with nursing provision.

11. The family were told they could apply directly to NHS England to consider the July 2019 decision. So Mr C appealed both the June 2018 and July 2019 decisions to NHS England. It held an independent review panel (IRP) meeting in August 2022 to consider both decisions. NHS England upheld both the ICB’s decisions. It sent its decision letter in September 2022.

12. Mr C initially came to us in September 2023. In May 2024 we asked NHS England to reconsider its decision. In August 2024, NHS England did a desktop review. It decided it could find no evidence of a primary health need.

13. Mr C came back to us in August 2025 as he remained dissatisfied with the outcome.

18. Before we decide if we should do 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.

19. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Mrs I 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.

20. 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.

21. 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 was coming to 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.

22. 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.

23. In this case, NHS England was looking at Mrs I’s needs at two separate points, in June 2018 and July 2019. During all but the very beginning of that period, she was living in the first care home (where she moved in July 2018 from the assisted living complex). We can see it considered evidence of her needs between these two points. The evidence we have seen so far indicates there was no significant difference in her needs at the times of the two assessments. So we are not differentiating between them when we give our view.

Domains

Behaviour

24. Mr C has told us he disagrees with how NHS England considered the behaviour domain. He says his mother’s needs were severe. This is key because her cognition was weighted as severe and the National Framework says that two severe weightings would usually indicate a primary health need and eligibility for CHC.

25. Mr C is unhappy it said his mother’s requirement for one-to-one care and supervision did not amount to a ‘prompt and skilled response that might be outside the range of planned interventions’. He says his mother required and received nine hours per day of constant dedicated 1:1 supervision during her waking hours to keep her and others safe from harm. The nursing home did not routinely provide this, as the residents usually received only a small number of 1:1 personal care interventions each day.

26. NHS England agreed with the ICB and said Mrs I’s behaviour needs were high.

27. The IRP felt Mrs I had disinhibited behaviour, which was predictable and consequently had 1:1 supervision if she wandered around the home to deter her from inappropriate interaction with other residents. However, it said there was no evidence that this required a ‘skilled’ response from a carer with, for example, specific behaviour management training. The independent chair within the desktop review also agreed with the weighing of high.

28. A severe level of need is described in the DST 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.’

29. A high level of need is described in the DST 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’.

30. We can see NHS England felt Mrs I’s behaviour did not align with the severe descriptor because she did not present with aggressive and physical outbursts. It also stated that she did not damage property and that her behaviour was ‘unthreatening’.

31. Our adviser said Mrs I lived with other vulnerable residents who, based on her behaviours, would inevitably have found her actions threatening and, in some cases, frightening.

32. The records show Mrs I would invade other people’s spaces and go into their rooms. She was sexually disinhibited and was obsessed with a male resident to the point that the care staff had to keep them separated.

33. The IRP discussed Mrs I’s pica (a mental health disorder characterised by the compulsive consumption of non-food items, which can pose serious health risks) within the nutrition and psychological and emotional domains. But it was also a behaviour that required the care staff to monitor and be aware of. Mrs I would eat anything that she could get hold of, including inanimate objects and faeces.

34. She required 1:1 carer supervision for her behaviours, but restraint was not needed. Our adviser said many homes and specialist units now use alternative methods such as distraction, diversion, observation, and giving space instead of restraint.

35. The DST guidance highlights the complexity of human behaviour, which can include challenging behaviours stemming from various factors such as communication difficulties or mental health issues. The evidence shows us Mrs I exhibited passive, non-aggressive invasive behaviour, severe disinhibition, and inappropriate interference with others, requiring 1:1 supervision to minimise risks like eating inedible items or making advances on others. The care home could provide some 1:1 care, but not to the extent she needed. Her unpredictable behaviour necessitated safeguarding alerts, additional staff beyond planned interventions, and separation from a resident she was fixated on - actions outside standard care arrangements.

36. Taking into consideration Mrs I’s behaviours, the fact that there were safeguarding alerts raised showed the evidence did not just align with the high descriptor.

37. She required a prompt and skilled response to her behaviour, provided by the 1:1 presence. Her behaviour was severe and frequent in nature which led to safeguarding issues. She was at risk of retaliation from other residents who may have found her invasive or unwarranted in her actions towards them.

38. A risk assessment in the IRP files also shows that Mrs I was assessed as high to severe risk in most areas of her daily life.

39. Therefore, we have found a failing here in how the IRP and desktop review considered this domain. We think it did not consider Mrs I’s behaviour needs in line with the DST guidance.

Key characteristics

40. The IRP applies an eligibility test to help it make a decision about a person’s CHC eligibility. This is called the four key characteristics – the nature, intensity, complexity and unpredictability of their needs. 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.

41. 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 properly considered the key characteristics of a person’s needs.

42. Mr C has told us he disagrees with NHS England’s consideration of the intensity and complexity key characteristics.

43. Mr C disagrees that his mother's needs were ancillary to social care, arguing her requirement for nine hours of 1:1 supervision daily exceeded routine care. Her first care home could not handle her complex behavioural needs, and the Court of Protection ordered her transfer to a specialist placement capable of meeting her requirements.

44. The IRP and desktop review determined her needs were addressed through FNC, GP support, the community mental health team, and secondary NHS services, taking a holistic view in their recommendation.

Intensity

45. 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 needed and how long it takes, how many carers are needed, and whether the care is across over several domains.

46. The IRP report shows there was a brief discussion about the intensity of Mrs I’s needs. It asked the family to set out the domains where her needs were greatest and whether the combination of the domains required consistent care throughout a 24-hour period. The IRP noted Mrs I required one carer to support her with personal hygiene, dressing, meals and drinks and the administration of medicine. In the desktop review, the chair agreed with the IRP.

47. Our adviser said the rationale is not as detailed as it should have been and did not explore why 1:1 presence was required. We do not think NHSE has adequately explained why the panel and desktop review did not find that she was intense to look after.

48. Our adviser said Mrs I had close observation and a 1:1 presence for nine hours a day to ensure that she did not interfere with other residents, eat inappropriate inanimate objects and to protect her dignity when she was disinhibited. As mentioned earlier above, this amount of 1:1 care was not to the extent she needed. This gave rise to a level of intensity that is not a feature of routine care.

49. The records show she needed supervision and monitoring with her general health and daily activities. Her care needed to be delivered with an increasing frequency of support.

50. The IRP recognised she had a level of need in many of the care domains, including for her obsessive compulsive disorder (OCD) and disinhibited behaviour. We note it concluded the levels of care required in these domains were what local authority carers could be expected to provide and were not intense enough to determine a primary health need. But the evidence is the majority of her interventions were not straightforward to meet for care staff within the nursing home.

51. The sexualised nature of some aspects of her behaviour also placed her at risk (when she developed an infatuation with another male resident). Although the eventual resolution was to introduce a physical distancing regime between them to keep Mrs I safe, the provision of supervision to that level proved beyond the capacity of the home.

52. It is not clear that the IRP and desktop review fully took these points into account. We have found NHS England’s decision about the intensity of Mrs I’s needs was not in line with the guidance set out in the National Framework.

Complexity

53. The National Framework says this characteristic 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.

54. The IRP report shows the panel briefly discussed the complexity of Mrs I’s needs. It felt her care for her physical frailties was not difficult to deliver. It said her level of cognition was linked to her behaviour and communication needs. The interactions did not become difficult or need adjusting on a regular basis. It said her overall care, including medication, was overseen by the hospital and the CMHT who would advise the GP and care home staff accordingly. It said specialist staff were not required to administer care to Mrs I as part of her daily care regime. In the desktop review, the chair agreed with the IRP.

55. Again, our adviser said the narrative for the complexity key characteristic should have contained more rationale for why the IRP did not feel that Mrs I’s needs were complex. The evidence is there was complexity in her presentation that arose from her psychological OCD, infatuation with a male resident and her behaviours of disinhibition, invading other people’s spaces and her pica and eating strange items.

56. Our adviser noted she could not be cared for in a general nursing home, leading to her being given notice and needing to move to another placement, where she required further 1:1 carer support. She only moved in September 2019, after the second assessment, but there is no evidence that her complex needs had only arisen at that time. The evidence shows those needs were present at the time of both CHC assessments.

57. We do not think NHS England thought about the knowledge and skill needed to care for Mrs I in detail. It did not think about whether the needs combined to create complexity and set out why it thought they did not.

58. We do not think NHS England considered the factors PG3 says it should. The evidence shows Mrs I’s care interventions were difficult to manage and needed specific skill and knowledge beyond that which a well-trained carer would have. The way in which she responded to interactions with care staff meant it was more complex to provide her care. Her needs were difficult to plan or provide for. This meant the carers and nurses required a higher level of skill and awareness than is normally expected to observe for and identify interventions for immediate action and remedy.

59. It is not clear NHS England fully took these points into account. We have found its decision about the complexity of Mrs I’s needs was not in line with the guidance set out in the National Framework.

Well managed needs

60. Mr C says his mother required skilled 1:1 supervision, provided by agency workers and family members, to manage risks linked to her severe, complex needs. Despite this support, she remained at risk, and her needs exceeded what the local authority could provide. He feels NHS England downplayed her needs because they were often successfully managed.

61. NHS England said it considered the well managed needs principle during its deliberations, and its conclusions were based on an objective assessment of her needs across care domains.

62. The National Framework says: ‘care must be taken not to misinterpret a situation where the individual’s care needs are being well-managed as being a reduction in their actual day-to-day care needs.’

63. We can see why Mr C was concerned about the IRP’s consideration of the well managed needs principle. Mrs I had a variety of needs which he felt the IRP did not recognise.

64. We have considered if the IRP did misinterpret Mrs I’s needs because of the level of care she received. We think the IRP did not correctly apply this principle.

65. The IRP acknowledged she needed a degree of skilled oversight and input but did not deem it as a skilled response outside of routine provision within her home.

66. Our adviser said the evidence we have seen so far indicates that Mrs I’s 1:1 care masked the extent of her needs. Without this additional care, her behaviours would have escalated, leading to more incidents, as Mr C stated. The IRP use phrases like ‘not inherently risky’ and ‘largely predictable’.

67. There is no evidence within the IRP report or desktop review about how NHS England considered the well managed needs principle, as it says it did, in line with the National Framework. It did not refer to how staff managed her needs, which it must do to make decisions about the key characteristics.

68. The report shows the IRP’s application of the well managed need principle was not supported by the evidence available and in line with the National Framework.

Impact

69. We are not persuaded Mr C, on behalf of his mother, has yet had a fair consideration of his appeal to NHS England. We can see the CHC process has been distressing and disappointing for Mr C and the family and is not yet adequately resolved, almost four years after the IRP. We cannot say what decision NHS England should have made. But there remains the possibility that Mrs I has incorrectly had to pay for care which should have been covered by CHC funding.

1. We have found that NHS England has not yet reviewed Mrs I’s eligibility for continuing healthcare (CHC) funding in line with the National Framework at either its IRP or via its desktop review.

2. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide if the IRP or desktop review decision was made in line with the National Framework. We cannot recommend NHS England changes its decision. So we are recommending NHS England holds a new IRP to reconsider the evidence available to it.

70. In considering our recommendations, we have referred to the ‘NHS Complaint Standards’. These state that NHS organisations should be open and honest when things have gone wrong, recognise when this has had an impact on people, and identify suitable ways to put things right.

71. We cannot ask NHS England to come to a different decision regarding Mrs I’s eligibility for CHC funding. It is not our role to decide whether a person has a primary health need.

72. We recommend NHS England holds a new IRP to consider Mr C’s appeal in respect of his mother’s eligibility for CHC funding in June 2018 and July 2019. Within one month of the date of this report, NHS England should contact Mr C to confirm when it will hold the IRP and the arrangements for this.

73. NHS England should send us evidence it has complied with our recommendation.