NHS England

3. Mr E complains about NHSE’s decision to uphold NHS Cheshire and Merseyside Integrated Care Board’s (the ICB) decision his mother was not eligible for NHS CHC for the period 1 July 2016 to 15 August 2016, following an Independent Review Panel (IRP) in May 2025.

4. Mr E disagrees with how the IRP considered: • the domains of Nutrition, Skin, Mobility, Psychological & Emotional Needs, Behaviour, and Drug Therapies & Medication • the date at which his mother was eligible.

5. Mr E says as a result, his mother had to pay for care costs which the NHS should have covered, which meant she had to sell her home.

6. As an outcome, Mr E wants NHSE to reconsider its decision and reimburse the care costs.

7. Mrs E had been a resident at a number of care homes before settling at one in April 2016. Mrs E remained there until she died in January 2018.

8. Mrs E had an extensive medical history, including: • a diagnosis of Alzheimer’s disease (the most common cause of dementia, a group of symptoms associated with an ongoing decline of brain functioning) in 2012 • a transient ischaemic attack (a temporary disruption in the blood supply to part of the brain, known as a ‘mini stroke’) in 2012, cerebrovascular (blood flow in the brain) disease, and high blood pressure • osteoarthritis (when the protective cartilage that cushions the ends of the bones gradually wears away), lumbar disc degeneration (the natural breakdown of the cushioning between the bones of the spine), and a broken arm in 2014 • psoriasis (a chronic skin condition resulting in raised inflamed patches), leg ulcers, and cellulitis (a bacterial skin infection affecting the deeper layers of the skin and underlying tissue).

9. In April 2023 the ICB undertook a desktop review of Mrs E’s eligibility for NHS CHC for the period 1 July 2016 to 10 September 2017. This was following our earlier involvement with the decision making process in this case. The ICB determined Mrs E was eligible for NHS CHC from 1 July 2017, but not eligible before.

10. Mr E appealed the ICB’s decision, so it held a local resolution meeting (LRM) in November 2023. The LRM upheld the decision that Mrs E did not have a primary health need before 1 July 2017, and so was not eligible for NHS CHC during this time.

11. Mr E applied for an independent review of the decision through NHSE’s IRP process. NHSE asked the ICB to complete a new DST for the period 1 July 2016 to 30 June 2017, which it did on 25 October 2024.

12. NHSE held an IRP meeting in May 2025.

13. The IRP determined that the ICB’s decision, that Mrs E was not eligible for NHS CHC, was unsound for the period from 16 August 2016, and asked it to reconsider its decision.

14. The IRP determined that the ICB’s decision, that Mrs E was not eligible for NHS CHC, was sound for the period from 16 August 2016. It is this decision which we are considering in this complaint.

17. Before we discuss our decision, we would like to explain some information about how an IRP reaches its decision, and what this means for how we look at it.

18. 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.

19. It is our role to decide whether the IRP made the decision that Mrs E was not eligible for NHS CHC in line with the National Framework. We cannot question discretionary decisions when these have been made without maladministration (fault). This includes decisions about eligibility for NHS CHC, where the decisions are based on clinical judgements.

20. The fact that someone else has a different opinion does not mean there must have been a fault in the decision-making process. 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.

21. The National Framework sets out that the diagnosis of a particular disease or condition does not in itself determine eligibility for NHS CHC eligibility, and this decision should be made based on the individual’s assessed needs.

22. The IRP can also reach a view as to whether the individual should or should not be considered to have a primary health need. If it is established the individual has a primary health need, they will be eligible for NHS CHC.

23. 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.

Nutrition

24. Mr E complains about how the IRP considered the domain of Nutrition. Mr E did not specify to us which level of need he believes his mother met the criteria for, but the IRP report says he submitted she had a High level of need. Mr E mentions his mother’s nutrition records being discontinued, and her only eating ice cream.

25. The IRP disagreed with the ICB in its assessment of a Moderate level of need, and concluded Mrs E had a High level of need for the period in question.

26. If Mr E believed his mother had a higher level of need than this, he should have raised this with the IRP at the time. We cannot be critical of the IRP’s consideration of this domain, if it agreed with the level of need Mr E submitted to it. We therefore will not consider this aspect of the complaint any further.

Skin

27. Mr E complains about how the IRP considered the domain of Skin, and says his mother met the criteria for a Severe level of need in this domain.

28. Mr E says he does not believe his mother’s skin tears had healed, and that she had a Waterlow score (a clinical tool used to assess a patient's risk of developing pressure ulcers) of 22 (20+ is considered very high risk).

29. The IRP agreed with the ICB in its assessment of a Moderate level of need in this domain for the period in question.

30. The DST defines Severe needs in this domain as, ‘Open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’ which are not responding to treatment and require regular monitoring/reassessment.’ or ‘Open wound(s), pressure ulcer(s) with ‘full thickness skin loss with extensive destruction and tissue necrosis extending to underlying bone, tendon or joint capsule’ or above’ or ‘Multiple wounds which are not responding to treatment.’

31. The DST defines Moderate needs in this domain as, ‘Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.’ or ‘Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.’ or ‘An identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment.’

32. Mrs E’s records mention some of her pressure wounds having healed. Even if some skin tears had not fully healed, this does not necessarily meet the descriptors for a higher level of need than Moderate. The descriptor for Moderate needs includes open wounds which are responding to treatment, not which have necessarily healed. The descriptor for Severe needs says the open wounds must have full thickness skin loss with damage or necrosis to subcutaneous tissue (the bottom most layer of the skin). Mr E has not claimed this was the case.

33. The descriptors do not include specific Waterlow score ranges, but being at very high risk of developing pressure ulcers matches the first part of the descriptor for Moderate needs.

34. We have not identified any indications of failings in the IRP’s consideration of Mrs E’s needs as they relate to Skin. We therefore will not consider this aspect of the complaint any further.

Mobility

35. Mr E complains about how the IRP considered the domain of Mobility, and says his mother met the criteria for a Severe level of need in this domain.

36. Mr E says his mother was bedridden.

37. The IRP agreed with the ICB in its assessment of a High level of need in this domain for the period in question.

38. The DST defines Severe needs in this domain as, ‘Completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.’

39. The DST defines High needs in this domain as, ‘Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.’ or ‘Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate’ or ‘At a high risk of falls (as evidenced in a falls history and risk assessment).’ or ‘Involuntary spasms or contractures placing the individual or others at risk.’

40. Being bedridden could match the descriptor for either a High or Severe level of need. The important difference in the two descriptors is whether there is high risk of serious harm on movement. The IRP thoroughly documented its discussion of the evidence brought to it when considering whether Ms E met this threshold, and decided she did not.

41. We have not identified any indications of failings in the IRP’s consideration of Mrs E’s needs as they relate to Mobility. We therefore will not consider this aspect of the complaint any further.

Psychological & Emotional Needs

42. Mr E complains about how the IRP considered the domain of Psychological & Emotional Needs. Mr E did not specify to us which level of need his mother met the criteria for, but the IRP report says he submitted she had a High level of need.

43. Mr E says it was only his mother’s worsening physical health which made her too weak to display her previous behaviours.

44. The IRP agreed with the ICB in its assessment of a Low level of need in this domain for the period in question.

45. 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.’

46. 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.’

47. The IRP recognises that Mrs E’s lack of reported agitation or other psychological symptoms in 2016 coincided with the time it was believed she was dying. If there was no evidence of needs arising because of Ms E’s psychological or emotional state during the period we are considering, we cannot be critical of the IRP for not scoring her any higher. We would not consider this to be a ‘well managed need’ as the need had not arisen which needs to be managed, due to Ms E’s physical health.

48. We understand how challenging it is to witness a parent in distress. We have not identified any indications of failings in the IRP’s consideration of Mrs E’s needs as they relate to Psychological & Emotional Needs. We therefore will not consider this aspect of the complaint any further.

Behaviour

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

50. Mr E says it was only his mother’s worsening physical health which made her too weak to display her previous behaviours.

51. The IRP agreed with the ICB in its assessment of a Moderate level of need in this domain for the period in question.

52. 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.’

53. The DST defines Moderate needs in this domain as, ‘‘Challenging’ behaviour that follows a predictable pattern. The risk assessment indicates a pattern of behaviour that can be managed by skilled carers or care workers who are able to maintain a level of behaviour that does not pose a risk to self, others or property. The individual is nearly always compliant with care.’

54. The IRP recognises what Mr E said about his mother’s behaviour in previous care homes, but says there is limited evidence of challenging behaviour during the period it is considering, before March 2017. This may again coincide with the time it was believed Mrs E was dying. Again, if there was limited evidence of needs arising because of challenging behaviour during the period we are considering, we cannot be critical of the IRP for not scoring Mrs E any higher. We would not consider this to be a ‘well managed need’ as the need had not arisen which needs to be managed, due to Ms E’s physical health.

55. We recognise Mr E had a different opinion to the IRP. We have not identified any indications of failings in the IRP’s consideration of Mrs E’s needs as they relate to Behaviour. We therefore will not consider this aspect of the complaint any further.

Drug Therapies & Medication

56. Mr E complains about how the IRP considered the domain of Drug Therapies & Medication, and says his mother met the criteria for a Severe level of need in this domain.

57. Mr E mentions his mother was taking end of life medications, as well as lorazepam which was stopped and restarted.

58. The IRP agreed with the ICB in its assessment of a High level of need in this domain for the period in question.

59. The DST defines Severe needs 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.’

60. The DST defines High needs 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 ‘Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.’

61. A patient being at end of life, and taking the relevant medications, does not automatically mean they are eligible for NHS CHC. The descriptors for this domain do not mention the type of medication, and an infrequent change of medication does not match the descriptors for a Severe or even High level of need.

62. We understand how difficult it is when a parent is reaching the end of life. We have not identified any indications of failings in the IRP’s consideration of Mrs E’s needs as they relate to Drug Therapies & Medication. We therefore will not consider this aspect of the complaint any further.

Eligibility date

63. Mr E complains about how the IRP considered the date at which his mother was eligible for NHS CHC.

64. Mr E says his mother was at end of life, and needed 24-hour nursing during the period in question. Mr E also says his mother’s condition was just as bad from 1 July 2016.

65. As discussed above, a person being at end of life does not automatically mean they are eligible for NHS CHC, as eligibility is based on their assessed level of need. Anyone in a nursing home would be receiving 24-hour care, so again we cannot use this to say a person is eligible for NHS CHC.

66. We have not identified any failings in the IRP’s consideration of any of the contested domains. This means we will only consider the IRP’s decision about when to decide Mrs E was eligible for NHS CHC from, given the domain weightings it decided upon.

67. We recognise the IRP determined Mrs E’s level of need for each domain was consistent throughout the period 1 July 2016 to 23 March 2017. We therefore understand why Mr E may feel as though the eligibility date the IRP decided on is arbitrary.

68. The DST says, ‘At the end of the DST, there is a summary sheet to provide an overview of the levels chosen and a summary of the individual’s needs, along with the MDT’s recommendation about eligibility or ineligibility. A clear recommendation (and decision) of eligibility for NHS Continuing Healthcare would be expected in each of the following cases: • 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.

Where there is either • A severe level need combined with needs in a number of other domains or • A number of domains with high and/or moderate needs

This may also, depending on the combination of needs, indicate a primary health need and therefore careful consideration needs to be given to the eligibility decision and clear reasons recorded if the decision is that the person does not have a primary health need.

In all cases, the overall need, the interactions between needs in different care domains, and the evidence from risk assessments should be taken into account in determining whether a recommendation of eligibility for NHS Continuing Healthcare should be made. It is not possible to equate a number of incidences of one level with a number of incidences of another level, as in, for example ‘two moderates equals one high’. The judgement 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.’

69. This sets out that eligibility for NHS CHC is not determined by domain weightings alone. It therefore follows that a person could be found eligible mid-way through a period where their domain weightings have not changed, as was the case for Mrs E.

70. Following the IRP’s consideration of each of the domains, it considered the four key characteristics (nature, intensity, complexity and unpredictability) and the incidental and ancillary test. Mr E has not told us about any specific concerns with the IRP’s consideration of these.

71. The IRP set out that it considered the nature, intensity, and complexity of Mrs E’s needs increased as of 16 August 2016. The IRP determined that the nature of Mrs E’s needs were indicative of a primary health need from this date. The IRP determined the intensity and complexity of Mrs E’s needs were indicative of a primary health need from later dates. The IRP determined the complexity of Mrs E’s needs were not indicative of a primary health need during the period under review.

72. Under nature, the IRP set out its consideration of Mrs E’s needs, the effect of those needs, and the interventions required to manage them. Under intensity, the IRP set out its consideration of the extent and severity of Mrs E’s needs, and the support required to meet them. Under complexity, the IRP set out its consideration of how Mrs E’s needs presented and interacted, and the skill required to meet them. Under unpredictability, the IRP set out its consideration of whether Mrs E’s needs fluctuated, whether she was rapidly deteriorating, and the risk involved in her care.

73. The IRP then set out its consideration of the incidental and ancillary test, and its summary of its overall decision as to whether Mrs E had a primary health need. The IRP concluded that Mrs E had a primary health need, and so was eligible for NHS CHC, from 16 August 2016.

74. We have not identified any indications of failings in the IRP’s consideration of the four key characteristics or the incidental and ancillary test. This means we cannot be critical of the date the IRP determined Mrs E was eligible for NHS CHC from. We therefore will not consider this aspect of the complaint any further.

75. We recognise it is difficult to see a parent unwell and needing support in a care home. We thank Mr E for bringing us his concerns with NHSE’s IRP meeting and subsequent report. Having considered these, we have found NHSE acted in line with the National Framework when it reached its view on Mrs E’s eligibility. We therefore will not consider Mr E’s complaint any further.

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

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