East Berkshire CCG

3. Mr A complains that the IRP upheld the CCG’s decision that his late mother was not eligible for NHS continuing care funding (CHC). He complains specifically that the skin domain should have been scored high, and that the IRP did not consider all of the information available.

4. He also complains that a number of errors were made by the CCG. These were identified by NHSE as the following:

• He had not been informed that Mrs A was to be assessed for CHC at a current assessment.

• He was not offered the opportunity of being involved with the current assessment, and subsequently his comments were not taken into account.

5. Finally, he complains that the IRP did not carry out an appropriate consideration of the four key indicators.

6. He has said that as a result of the IRP’s decision, he has been financially impacted.

7. He is seeking a new IRP to be convened in order to consider this matter.

9. Mr A was represented by a law firm, referred to in this report as as ‘the Solicitors’.

Consideration of the ‘skin’ domain

10. Mr A says this care domain should have been weighted as a high level of need. The IRP and CCG weighted this domain as moderate.

11. The definitions for the weighting of the care domains are set out in the Decision Support Tool (DST). The DST is a document which is completed prior to the IRP, during the CHC consideration process. It aids in assessing whether CHC funding should be granted. The National Framework, which sets out the process for CHC consideration, states that a DST must be completed when considering eligibility for CHC.

12. Moderate needs in this domain are defined 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 ‘a skin condition which requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment.’

13. A high level of need in this domain is defined as ‘pressure damage or open wound, pressure ulcer with full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule, which is responding to treatment” OR “specialist dressing regime in place; responding to treatment’.

14. The complaint letter to us from the Solicitors states that Mr A believes his mother should have scored high under the skin domain and explains that conclusion has been reached upon further consideration of the IRP report and the available information.

15. We have reviewed the IRP report that was completed in October 2019. In this report, it appears that Mr A did not challenge the IRP’s view that his mother had a moderate need at this time. The report sets out that under this domain, the CCG, Mr A, and the IRP all agreed that there was a moderate level of need. The Solicitors confirmed to us via email in July 2021 that the weighting of this domain was not challenged by Mr A and his family during the IRP.

16. Our role is to consider whether the IRP took into account all of the available evidence in order to reach a robust conclusion. At the time of the IRP, neither Mr A nor the Solicitors presented a disagreement with the original domain weighting of moderate.

17. The National Framework says that NHS England’s consideration of a request for an independent review should include ‘scrutiny of all available and appropriate evidence’. This was Mr A’s opportunity to put his argument and evidence forward to challenge the eligibility decision. He did not do that and therefore there is no indication that the IRP failed to consider his evidence when reaching its decision.

18. We have not identified any indications of failings in the IRP’s consideration of this domain, as the IRP did not have a dispute to consider at the time. Whilst we recognise that Mr A has since changed his mind and believes this domain should be weighted as high, we cannot criticise the IRP for its consideration of this domain, as it was not challenged at the time.

Consideration of the key indicator ‘complexity’

19. Mr A has said that he does not feel the IRP fully considered the four key indicators in relation to his mother’s care needs.

20. Eligibility for CHC is determined by considering whether an individual has a primary health need. A primary health need can be established by considering the individual’s care needs, with reference to the four key indicators of nature, intensity, complexity and unpredictability. We have considered each of these four indicators below, beginning with the complexity indicator.

21. The National Framework defines complexity as:

‘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. 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.’

22. Mr A complains that the submissions his representative made regarding this key indicator were not taken into consideration by the IRP. However, under the ‘evidence considered’ section in the IRP report we can see that this includes the submission from the Solicitors dated August 2017, and the ‘updated submission from [the Solicitors], October 2019.’

23. We have reviewed the information set out by the Solicitors in relation to this key indicator.

24. The Solicitors argued that, as Mrs A could not reliably communicate, the care home had to anticipate her needs, which contributed towards a level of complexity consistent with a primary health need. The Solicitors also stated that Mrs A was at risk of malnutrition and her food had to be prepared separately due to her coeliac disease (a disease in which the small intestine is hypersensitive to gluten).

25. The Solicitors state that the management of Mrs A’s skin was complex, as she was immobile, which increased the risk of skin deterioration, and she suffered with pressure sores. Finally, the Solicitors state that Mrs A had complex needs in her medication, as she required morphine, a strong painkilling drug, to be administered on 1 October.

26. We have seen that the Solicitors have highlighted Mrs A’s needs, but other than the information set out regarding the skin domain, the Solicitors have not set out how these domains interact with one another to bring a complexity of need that is consistent with a primary health need, as set out in the guidance.

27. The IRP recognised that Mrs A’s dementia (a term used to refer to the inability to remember, think, or make decision that impact day to day life) and consequent cognitive deficit affected all her care needs, but noted that meeting her needs was not problematic, and could be managed effectively by the care home.

28. The IRP stated that the only exception to this was during the final three weeks of Mrs A’s life, when clinical judgment was needed to determine when morphine was appropriate for pain relief.

29. The IRP concluded that the complexity of Mrs A’s needs did not constitute a primary health need.

30. We have reviewed the records for Mrs A in order to consider the complexity of her needs. We have not identified any complexity in her needs that have resulted from an interaction of her needs.

31. The records from the case home show that generally, Mrs A’s needs were managed well by them. We understand that the Solicitors state that Mrs A was at risk of malnutrition. However, her needs in relation to her food and drink intake were managed well by the care home, and no specialist input was required. For example, on 3 February, the records state ‘good diet taken. Continued to mobilise well with help of staff.’

32. On 28 September, the records state ‘assisted with personal hygiene needs. Ate and drank well. Continued to nurse in bed.’ The following day the records show that the doctor was called, but no follow up action was required, and no medication was prescribed.

33. On 1 October the records state that she ‘continued to show signs of deterioration’ but other than the prescription of morphine, no additional care was required at this time.

34. Reviewing the GP records, there were occasional visits from the GP to the care home to care for Mrs A. There were a few instances of pressures sores, a suspected urinary tract infection (UTI - an infection of your bladder, kidneys or the tubes connected to them on 22 January, and she suffered with diarrhoea (a condition in which faeces are discharged from the bowels frequently and in a liquid form). The reasons for the GP visits to the care home do not appear to interact with one another. No additional specialist input was required to anticipate or manage Mrs A’s needs.

35. Her health deteriorated gradually throughout the period under review, but we have not seen any evidence to show that the care needs interacted with one another to cause a level of complexity consistent with a primary health need. We have not seen that her needs were complex to manage, and all the care was provided efficiently by care staff with occasional input from the GP.

36. We have not seen any additional evidence to suggest an interaction of needs that has not been considered by the IRP. We have seen that the IRP has considered the family’s submissions on this matter, and a robust consideration of this key indicator has been carried out, which is supported by the records of the care given. Therefore, we have not identified any indications of failings in relation to this point.

Consideration of the key indicator ‘unpredictability’

37. The National Framework defines unpredictability as:

‘Unpredictability 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. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.’

38. The Solicitors say that the submissions that it made regarding this key indicator were not taken into consideration by the IRP. However, under the ‘evidence considered’ on the IRP report we can see that this includes the submission from the Solicitors dated August 2017, and the ‘updated submission from [the Solicitors], October 2019.’

39. We have reviewed the information set out by the Solicitors in relation to this key indicator. The Solicitors stated that the Local Resolution Meeting (LRM) did not consider the unpredictability of Mrs A’s needs. They highlighted that Mrs A had episodes of challenging behaviour, notably that she was aggressive. The Solicitors also stated that Mrs A’s condition rapidly deteriorated from 29 September.

40. The IRP noted that Mrs A’s condition was deteriorating gradually as she neared the end of her life. The IRP recognised that Mrs A’s needs could be anticipated, and her care was planned and delivered appropriately. The IRP noted that professional input was provided by the registered nurse at the care home, with support from community mental health practitioners, but their input was not regularly required. The IRP noted that the care plans did not change frequently.

41. We have reviewed Mrs A’s records in order to consider the unpredictability of her needs.

42. The DST noted, under significant events, that Mrs A attended the accident and emergency department (A&E) in December 2012, but this is before the review period. Under significant events, there are two events listed in the review period. On 1 October, when Mrs A’s condition worsened, and on 2 October, when she died in the nursing home.

43. We have not seen any significant events that were not predicted and planned for during this period.

44. There were only two entries in Mrs A’s GP records during the period under review. A chesty cough in September and dementia in October.

45. Mrs A had a substantial weight loss during this period, but records show she continued to eat and drink well. For example, records on 9 February state ‘ate and drank well’. On 13 May the records state ‘good diet taken with assistance’. On 24 June the records say ‘ate all her meals well.’

46. We note that the Solicitors state that her care needs had to be anticipated, meaning that her care needs were unpredictable. However, we have seen that her care needs were anticipated and managed well, and there were no instances of sudden deterioration or occasions which required specialist or unplanned input.

47. The IRP concluded by stating that it did not consider that Mrs A’s needs had a level of unpredictability that was consistent with a primary health need.

48. We have not seen that Mrs A had any sudden changes in her levels of need or rapid deterioration that required additional input from anyone other than care home staff and the GP. She was not admitted to hospital during the review period and we have not identified any other evidence that has not been already considered by the IRP in relation to the unpredictability of Mrs A’s needs.

49. As such we consider the IRP’s consideration of this key indicator consider all of the relevant evidence, including the family’s submissions, and its conclusions are supported by the records of the care given.

Consideration of key indicator ‘nature’

50. The National Framework defines Nature as:

‘Nature 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.’

51. The Solicitors complain that the submissions it made regarding this key indicator were not taken into consideration by the IRP. However, under the ‘evidence considered’ on the IRP, we can see that this includes the submission from the Solicitors dated August 2017, and the ‘updated submission from [the Solicitors], October 2019.’

52. We have reviewed the information submitted to the IRP from the Solicitors in relation to this key indicator. The Solicitors set out that Mrs A was often confused, unable to fully communicate her needs, immobile and at high risk of falls, doubly incontinent, suffered with pressure sores, and she had pain throughout the period. The Solicitors also pointed out that Mrs A was administered morphine from 1 October, but this is the last day of the period under review and does not give an overall view of her care needs for the entire period. The IRP took into consideration all of these points.

53. The IRP report sets out that Mrs A was dependent on others to keep her safe and support her with all activities of daily living. The IRP noted that she was mostly compliant with her care, but did display challenging behaviour at the end of January. She was unable to reliably communicate her needs, and could not make major decisions about her life or assess risk. The IRP noted that she would participate in activities when encouraged to do so by staff, she slept and ate well, and GP records dated 18 June note that she was generally in good spirits.

54. The IRP considered Mrs A’s mobility, noting that it was variable and declined over the period under review. She was able to assist and co-operate with transfers, and the IRP noted that from June Mrs A stayed in bed for at least part of the day.

55. The IRP recognised that Mrs A had weight loss, which the GP believed was linked to her dementia. She had to have her food pureed in order to reduce her risk of choking, but she continued to eat and drink well despite this.

56. The IRP noted that Mrs A was doubly incontinent but that this was managed effectively by the care home. The IRP also recognised that she suffered with pressure sores and blisters, but was seen by a Tissue Viability Nurse and the grade 2 pressure sore, which developed in June, was healing by September.

57. The IRP states that Mrs A’s drug regime was not complex, and she was compliant with her medication. Morphine was administered as required from 10 September to help Mrs A manage her discomfort, although the GP did note that she was eating and drinking and clinically well at this time.

58. The IRP states that there was nothing to suggest that her shortness of breath had any impact on her final illness, and there were no indications of altered states of consciousness.

59. The IRP concluded its consideration of the nature of Mrs A’s needs by stating that her condition was deteriorating gradually throughout the period, and that whilst she required compassionate care over a 24-hour period, there was no indication within the records that she needed a level of care that went above and beyond what could be provided by the care home.

60. We have reviewed the records in relation to this key indicator in order to consider the nature of Mrs A’s needs.

61. Mrs A had a number of medical conditions including osteoarthritis (degeneration of joint cartilage and the underlying bone), Parkinson’s disease (a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement), and Lewy body dementia (a type of progressive dementia that leads to a decline in thinking, reasoning and independent function). Mrs A had pressure sores that needed to be managed and she needed to be turned in bed to avoid the exacerbation of these sores. The records show that this took place regularly and was managed well. On 29 September the daily care notes state ‘repositioned regularly’.

62. The Solicitors submit that Mrs A was often confused and unable to fully communicate her needs. The records show that on the whole Mrs A’s needs were met fully by the care home staff. The records show this throughout the period under review. Records from 27 July state ‘all meals taken well’. Records on 21 September state ‘pads checked and changed’. On 29 September the records state ‘safety and comfort maintained.’

63. These are just examples of the information contained in the records, which on the whole show that Mrs A’s care needs were met throughout this period under review.

64. The IRP has carried out a full consideration of the nature of Mrs A’s needs, and whether these would constitute a primary health need. Mrs A was compliant and co-operative with the care she received.

65. The IRP considered all of the points that were raised by the Solicitors and its conclusions are supported the records of the care provided to Mrs A. We therefore have not identified any indications of failings in relation to this point.

Consideration of the key indicator ‘intensity’

66. The National Framework defines Intensity as:

‘Intensity 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’).’

67. The Solicitors complains that the submissions that it made regarding this key indicator were not taken into consideration by the IRP. However, under the ‘evidence considered’ on the IRP, we can see that this includes the submission from the Solicitors dated August 2017, and the ‘updated submission from [the Solicitors], October 2019.’

68. We have reviewed the Solicitors’ submission for the intensity of Mrs A’s needs. The Solicitors have focused largely on the consideration made by the LRM. The Solicitors have stressed that Mrs A had difficulties communicating, mobilising (which impacted her skin integrity), and her medication and nutritional needs had to be monitored. The submission did not set out why these points formed a totality of need that was intense enough to constitute a primary health need. We have seen that the IRP have considered all of these points in its consideration of this key indicator.

69. The IRP recognised that Mrs A had needs in ten out of the 11 domains. The IRP noted that she only had severe needs in the cognition domain. She had a high level of need in the nutrition and the drug therapies and medication domains. She had moderate needs in the communication, mobility, continence, skin, and behaviour domains. The remaining domains were scored as low.

70. The IRP noted that care needed to be delivered as necessary over a 24-hour period and Mrs A required a gluten-free diet, but she ate and drank well with some assistance, slept well, and was compliant with her medication. She needed help with her mobility as it declined, and she needed turning every three to four hours, but the IRP noted that these interventions were not lengthy and could be carried out by the care staff.

71. We have reviewed Mrs A’s records in order to consider the intensity of her needs. The DST noted that whilst Mrs A was prescribed medication during this period, there were no unplanned interventions from any specialist services. Mrs A did need a specialist diet, but there was no need for frequent dietetic review during this period.

72. We have seen in the records that occasionally Mrs A had to be seen by her GP, but there were no specialist interventions required from other medical professionals. The DST also highlighted that care interventions required were not particularly intense or frequent during the period under review.

73. The records on 29 July state ‘All meds taken well. Continues to be nursed in bed.’ There are numerous references to her being turned in bed and this is managed by the care home staff. For example, on the same date as above, the records state ‘Magda is being turned two hourly.’ On 12 August the records state ‘nursed in bed on air mattress with regular turns.’

74. We have seen that Mrs A’s needs were met. The records on 29 September state ‘Dr did not prescribe any meds but only advised to keep her comfortable.’ This shows that her needs towards the end of the period were not intense enough to warrant additional medication, prior to the prescription of morphine the day before her death.

75. On 29 September the records state ‘medication not given as she is unable to swallow.’ It is clear that towards the end of the period under review, there were some difficulties in providing the care that Mrs A needed. However other than this point we have seen that her needs were met, as evidenced in the information set out above.

76. The IRP concluded that Mrs A’s needs did not meet an intensity associated with a primary care need.

77. We have seen that all of the available information, including the family’s submissions, was taken into account by the IRP. Its conclusions are supported by the records of the care Mrs A received.

Mrs A had not been informed by the CCG that her mother was to be assessed for NHS Continuing Healthcare at a current assessment.

78. The IRP has considered this complaint point regarding the CCG. The IRP recognised that the CCG has apologised for the shortcomings in dealing with the case.

79. The IRP noted the apology and accepted the CCG’s assurances that it had recruited more staff and changed its procedures since Mrs A’s assessment. We have seen that the IRP has acknowledged the family’s concerns and recognised that this has been addressed by the CCG. The National Framework sets out that the IRP’s role is to consider the procedure followed by the CCG in reaching its decision, which we have seen it has done. Our Principles for Remedy say that we expect organisations to acknowledge and apologise for its errors and to take action to ensure they do not happen again.

80. We have seen that the CCG has taken appropriate actions and therefore do not consider that there are any indications of failings in relation to the IRP’s consideration of this matter. We are also satisfied, given our consideration above, that this didn’t impact the eligibility decision and so do not consider that any further remedy is required. We therefore do not consider that there are any indications of failings in relation to this point as the IRP has acted appropriately in its consideration of the CCG’s actions.

Mrs A was not offered the opportunity of being involved with the current assessment carried out by the CCG, and subsequently her comments were not taken into account.

81. The IRP has considered this complaint point regarding the CCG. As above, the IRP recognised that the CCG has apologised for the shortcomings in dealing with the case. The IRP considered both of these complaint points under the same heading.

82. The IRP noted the apology that was offered by the CCG, and accepted its assurances that the CCG had recruited more staff and changed its procedures since Mrs A’s assessment.

83. As above, we have seen that the IRP has acknowledged the family’s concerns and recognised that this has been addressed by the CCG. We therefore do not consider that there are any indications of failings in relation to this point as the IRP has acted appropriately in its consideration of the CCGs actions.

84. In summary, we have decided we will not take further action on your complaint. I hope I have explained the thorough consideration we have given to our decision and clearly outlined the reasons for it.

1. We have carefully considered Mr A’s complaint about NHS England and its independent review panel (IRP) decision. We have seen no indication that anything went wrong in relation to the IRP’s decision on eligibility. We have also seen no indication that anything went wrong in the way the IRP considered the clinical commissioning group’s (CCG) handling of the initial assessment.

2. We understand that this has been a long and difficult process for Mr A to pursue and appreciate the emotional and financial impact the decisions reached in this case have caused. We hope our explanation for our decision below reassures Mr A of the detailed consideration we have given to his complaint.