NHS England - London (Local office)

3. Mr P complains about NHSE’s decision to uphold South West London Clinical Commissioning Group’s (the CCG) decision his mother, Mrs P, was not eligible for NHS CHC, following an Independent Review Panel (IRP) in December 2022.

4. Mr P disagrees with how the IRP considered: • the domains of Psychological and Emotional Needs, Behaviour, and Drug Therapies and Medication • the four key characteristics • his mother’s eligibility, given the domain weightings it agreed with.

5. Mr P says as a result, his mother had to pay for care costs which the NHS should have covered. Mr P also says going through this appeals process has caused him distress and inconvenience.

6. As an outcome, Mr P wants NHSE to apologise, reconsider its decision, and provide him with a financial remedy.

7. Mrs P moved to a care home in November 2018.

8. Mrs P sadly died in April 2020. The period that the CCG assessed Mrs P for NHS CHC for is between these two dates.

9. In November 2021, the CCG wrote to Mr P with the outcome of its retrospective NHS CHC assessment of Mrs P. The CCG concluded that Mrs P was not eligible for NHS CHC during this period as she did not have a primary health need.

10. Mr P appealed the CCG’s decision in December 2021, and the CCG held a local resolution meeting (LRM) in February 2022. The LRM upheld the decision that Mrs P did not have a primary health need, and so was not eligible for NHS CHC.

11. Mr P applied for an independent review of the decision through NHSE’s IRP process. NHSE held an IRP meeting in December 2022. It is this process which we are considering in this complaint.

14. Before we discuss our decision, we will explain some information about how an IRP reaches its decision, and what this means for how we consider it.

15. The National Framework sets out that an individual, or their representative, may ask NHSE to arrange an IRP to review a CCG or ICB’s decision to decline NHS CHC.

16. The purpose of the IRP is to review the procedure followed by the CCG or ICB in reaching its decision about an individual’s eligibility for NHS CHC.

17. The IRP can also reach a view as to whether the individual should be considered to have a primary health need, and therefore be eligible for NHS CHC.

18. It is our role to decide whether the IRP made the decision to uphold that Mrs P was not eligible for NHS CHC in line with the National Framework.

19. When we consider a complaint about an IRP, we look at whether it took account of all the relevant information provided to it in reaching its decision about whether this was the case.

20. We cannot question discretionary decisions when the IRP has made these without maladministration (fault). This includes decisions about eligibility for NHS CHC, where the decisions are based on clinical judgements. The fact that someone else has a different opinion does not mean there must have been a fault in the decision-making process.

Psychological and Emotional Needs

21. Mr P complains about how the IRP considered the domain of Psychological and Emotional Needs, and says his mother met the criteria for a High level of need in this domain.

22. Mr P says that his mother had severely impaired cognition and high needs in communication, meaning that she was unable to reliably express her wishes or needs. This meant she had no input into her care planning, she did not engage any social activities, and her behaviour became challenging and unpredictable during the administration of personal care.

23. The IRP agreed with the CCG in its assessment of a Low level of need in this domain.

24. The DST defines High needs 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.’

25. The DST defines Low needs in this domain as, ‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which are having an impact on their health and/or well-being but respond to prompts, distraction and/or reassurance.’ or ‘Requires prompts to motivate self towards activity and to engage them in care planning, support, and/or daily activities.’

26. This domain is concerned with the needs arising from a person’s psychological and emotional state. When challenging this domain, the needs Mr P has told us about are in relation to his mother’s Cognition, Communication, and Behaviour. Mr P has not told us about any needs arising from his mother’s psychological and emotional state, other than the ones the IRP agreed with.

27. We have not identified any indications of failings in the IRP’s consideration of Mrs P’s needs as they relate to Psychological and Emotional Needs. We therefore will not consider this aspect of the complaint any further.

Behaviour

28. Mr P complains about how the IRP considered the domain of Behaviour, and says his mother met the criteria for a Severe or Priority level of need in this domain.

29. Mr P says: • his mother displayed challenging behaviour which was unpredictable • his mother needed two to three staff to administer her personal care due to the risk of her punching, kicking, stamping, spitting or swearing, and staff were unable to complete care interventions on three out of seven occasions • the care home needed to involve the Care Home Intervention Team (CHIT) to help deal with his mother’s behaviour.

30. The IRP agreed with the CCG in its assessment of a High level of need in this domain.

31. The DST defines Priority needs 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.’

32. The DST defines Severe needs 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.’

33. The DST defines High needs 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.’

34. We recognise that there are references to Mrs P’s behaviour being unpredictable, and that only the descriptor of a Priority level of need mentions unpredictability. However, it says ‘unpredictability that presents an immediate and serious risk to self, others or property’, not just ‘unpredictability’. The IRP have thoroughly considered Mrs P’s challenging behaviour and whether it meets this threshold, and concluded it did not.

35. The number of staff required for care interventions does not form part of the descriptors for the levels of need in this domain. The IRP have considered the severity of the risk to self, others or property during these interventions. Staff being unable to complete care interventions on three out of seven occasions is in relation to Mrs P only bathing on average four days a week, due to a dislike of this process. It is worth noting that compliance here is in relation to all aspects of care, not just personal care. The IRP have considered whether this meant Mrs P was not ‘usually’ responsive to planned interventions, and concluded it did not.

36. We recognise that the CHIT are not routine care home staff, and the descriptor for a Severe level of need does mention a person needing a prompt and skilled responses outside the range of planned interventions. The CHIT exist to provide assessment, support and guidance, rather than actively respond to a person’s challenging behaviours when they are happening. The involvement of guidance and support from outside organisations does not form part of the descriptors for the levels of need in this domain.

37. We understand Mr P does not agree with the view of the IRP, and we recognise how challenging it is to witness a loved one have a change in behaviour. We have not identified any indications of failings in the IRP’s consideration of Mrs P’s needs as they relate to Behaviour. We therefore will not consider this aspect of the complaint any further.

Drug Therapies and Medication

38. Mr P complains about how the IRP considered the domain of Drug Therapies and Medication, and says his mother met the criteria for a Priority level of need in this domain.

39. Mr P says his mother required the covert administration of medication by the staff, as without this her condition would have rapidly deteriorated, and that this needed careful monitoring.

40. The IRP agreed with the CCG in its assessment of a Moderate level of need in this domain.

41. The DST defines Priority needs in this domain as, ‘Has a drug regime that requires daily monitoring by a registered nurse to ensure effective symptom and pain management associated with a rapidly changing and/or deteriorating condition.’ or ‘Unremitting and overwhelming pain despite all efforts to control pain effectively.’

42. The DST defines Moderate needs in this domain 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.’

43. All medications provided to patients in a care home setting need staff to monitor them. The descriptor of a Priority level of need specifies that a person’s drug ‘regime’ needs daily monitoring, which was not the case for Mrs P. The staff routinely administered Mrs P’s medication in the same covert way, without issue. This matches the descriptor of a Moderate level of need.

44. We have not identified any indications of failings in the IRP’s consideration of Mrs P’s needs as they relate to Drug Therapies and Medication. We therefore will not consider this aspect of the complaint any further.

Nature

45. Mr P complains about how the IRP considered the nature of his mother’s needs, and disagrees with many of the conclusions it came to.

46. The National Framework says, ‘Nature: This describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.’

47. The IRP set out its comprehensive consideration of Mrs P’s needs, the effect of those needs, and the interventions required to manage them.

48. We have not identified any indications of failings in the IRP’s consideration of the nature of Mrs P’s needs. We therefore will not consider this aspect of the complaint any further.

Intensity

49. Mr P complains about how the IRP considered the intensity of his mother’s needs, and disagrees with many of the conclusions it came to.

50. The National Framework says, ‘Intensity: This 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’).’

51. The IRP set out its comprehensive consideration of the extent and severity of Mrs P’s needs, and the support required to meet them.

52. We have not identified any indications of failings in the IRP’s consideration of the intensity of Mrs P’s needs. We therefore will not consider this aspect of the complaint any further.

Complexity

53. Mr P complains about how the IRP considered the complexity of his mother’s needs, and disagrees with many of the conclusions it came to.

54. The National Framework says, ‘Complexity: 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. This may arise with a single condition, or it could include the presence of multiple conditions or the interaction between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as where a physical health need results in the individual developing a mental health need.’

55. The IRP set out its comprehensive consideration of how Mrs P’s needs presented and interacted, and the skill required to meet them.

56. We have not identified any indications of failings in the IRP’s consideration of the complexity of Mrs P’s needs. We therefore will not consider this aspect of the complaint any further.

Unpredictability

57. Mr P complains about how the IRP considered the unpredictability of his mother’s needs, and disagrees with many of the conclusions it came to.

58. The National Framework says, ‘Unpredictability: This describes 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.’

59. The IRP set out its of whether Mrs P’s needs fluctuated, whether she was rapidly deteriorating, and the risk involved in her care.

60. We have not identified any indications of failings in the IRP’s consideration of the unpredictability of Mrs P’s needs. We therefore will not consider this aspect of the complaint any further.

Eligibility decision

61. Mr P complains about how the IRP considered his mother’s eligibility, given the domain weightings it agreed with.

62. The National Framework says, ‘Although the tool supports the process of determining eligibility and ensures consistent and comprehensive consideration of an individual’s needs, it cannot directly determine eligibility. Indicative guidelines as to threshold are set out in the tool (for example, if one area of need is at Priority level, then this demonstrates a primary health need), but these are not to be viewed prescriptively. Professional judgement should be exercised in all cases to ensure that the individual’s overall level of need is correctly determined. The tool is to aid decision-making in terms of whether the nature, complexity, intensity or unpredictability of a person’s needs are such that the individual has a primary health need.’

63. The IRP set out its consideration of whether it believed Mrs P had a primary health need, given the domain weightings, the four key characteristics and the incidental and ancillary test, and concluded she did not. We have not identified any indications of failings in the IRP’s consideration of Mrs P’s eligibility. We therefore will not consider this aspect of the complaint any further.

64. We understand how strongly Mr P feels that his mother should have been eligible for NHS CHC. We recognise it is difficult to see a parent unwell and needing support in a care home. We have fully considered Mr P’s concerns and have found the IRP acted in line with the National Framework when it reached its view. We therefore will not consider Mr P’s complaint any further.

1. We have carefully considered Mr P’s complaint about NHS England (NHSE). We were very sorry to learn about the death of Mr P’s mother, Mrs P. We recognise that the NHS Continuing Healthcare (CHC) process can be difficult, time consuming, and stressful.

2. We have decided not to consider Mr P’s complaint any further. This is because we have not found any indications of failings in NHSE’s consideration of Mr P’s appeal.