NHS England

NHS England

5. Miss D complains NHS England’s independent review panel (IRP) wrongly upheld NHS North East and North Cumbria ICB’s decision that Mrs T was not eligible for CHC funding between 1 January and 20 July 2017.

6. Miss D disagrees with how the IRP considered the skin, psychological and emotional, cognition, behaviour and drug therapies and medication domains. She also disagrees with how the IRP considered the four key characteristics of Mrs T’s needs. She says the IRP did not properly consider the issues she raised about what Mrs T’s records actually said and meant.

7. Miss D says Mrs T wrongly paid for her own care because of the eligibility decision.

8. Miss D would like NHS England to reconsider its IRP assessment decision.

NHS North East and North Cumbria ICB

9. Miss D complains about how NHS North East and North Cumbria ICB handled her concerns that it had not repaid fully backdated care fees it owed.

10. She says she continually had to contact the ICB to get it to resolve this issue, but it responded by unfairly saying her behaviour was unreasonable.

11. Miss D says this was very frustrating and upsetting for her.

12. She would like the ICB to apologise and provide her with a financial remedy for the distress it caused.

13. CHC is a package of care for people who have a ‘primary health need’. An integrated care board (ICB) will decide this by doing a CHC assessment. If that shows the person has a primary health need and is eligible for CHC, it will fund all their health and social care needs.

14. If the ICB decides the person is not eligible for CHC, the person or their representative can appeal that decision, first to the ICB and then to NHS England. NHS England will hold an independent review panel (IRP) to look at the ICB’s decision and how it reached it. The IRP can review all the evidence and reach its own decision. Sometimes that is the same as the ICB’s. But sometimes the IRP overturns the ICB’s decision and says the person should have been eligible. Then the ICB should arrange and fund a package of care for the person, if that is still needed, or reimburse the costs of care they have already paid for.

15. A person or their representative can also ask an ICB to consider if they may have been eligible for CHC for a past period, as long as there were no CHC assessments during that time. This is called a previously unassessed period of care, or PUPoC.

16. In 2016 Mrs T moved to a new residential care home, after her previous home closed. Her husband had died and she had no direct next of kin. Her solicitor had power of attorney for her for her finances, but not her health and welfare. She had been diagnosed with several medical conditions including chronic kidney disease, osteoarthritis, venous eczema, and a combination of Alzheimer’s disease and vascular dementia. She died in 2022, aged 100.

17. In July 2018 the ICB (then the clinical commissioning group, or CCG) assessed her care needs. It did not find her eligible for CHC. NHSE’s IRP overturned that decision.

18. Her solicitors asked for a PUPoC assessment for the period 1 January 2018 to 18 July 2018. In February 2023, the ICB found Mrs T was eligible for CHC in this period.

19. Miss D asked for another PUPoC assessment for 1 January to 31 December 2017. The ICB found Mrs T eligible, but only from 21 July to the end of December. Miss D appealed this decision, to the ICB and then NHS England which held an IRP meeting on 17 April 2024. It upheld the ICB’s decision that Mrs T was not eligible for CHC between 1 January and 20 July 2017. Miss D then complained to us.

20. In September 2023 Miss D complained to the ICB that it had not yet repaid Mrs T’s care costs for the period 1 January to 18 July 2018. She and the ICB contacted each other about this until 13 March 2024, when the ICB confirmed it had now made all payments.

21. On 15 March the ICB’s operations director wrote to Miss D to say it was initiating its procedure for handling habitual and/or persistent complainants. It said the issue of the outstanding fees was closed and it would not answer any more queries on it. The ICB said it would answer queries about other new and unrelated issues and it requested she only communicate with it in writing.

22. Miss D complained to us about this in July 2024.

NHSE

25. Before we set out our decision, we would like to explain how an IRP reaches its decision and what this means for how we look at it.

26. An IRP is a panel set up by NHS England that completes a review of:

a) the primary health need decision made by an ICB or b) the procedure followed by a ICB in reaching a decision as to that person’s eligibility for CHC.

27. The IRP then makes a recommendation to NHS England in light of its findings.

28. 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 made its decision in line with the National Framework.

29. When looking at complaints about IRP decisions, we consider four key questions.

Did the IRP get all the relevant evidence?

30. Paragraph 219 of the National Framework says the following:

‘the key elements involved in considering requests for independent reviews of NHS Continuing Healthcare eligibility include: scrutiny of all available and appropriate evidence as described in the Local Resolution section.’

31. We have reviewed the information provided to us in NHS England’s case file and we can see the IRP had access to the following: • Mrs T’s care home records, GP records, and district nursing records • correspondence from Miss D and her representative, which includes her views and concerns about his eligibility for CHC funding • the decision support tool (DST) and local resolution meeting documentation.

32. We can see there are no obvious omissions in the documents and evidence NHS England considered. We are satisfied there is no indication of a failing in how the IRP established all the appropriate and relevant clinical facts. The IRP had access to information clearly detailing Mrs T’s needs in the period under consideration.

33. Miss D raised concerns about the limited information within the care home records. These records were used for eligibility decisions on the whole of 2017, with the ICB previously finding Mrs T eligible from 21 July 2017 onwards. We can see the records do not contain as much information as we might expect. But we can see they do contain important information and the IRP also had Mrs T’s GP and other medical and district nursing records. Mrs T did not visit a hospital or need mental health services between 1 January and 20 July 2017.

34. We appreciate Miss D’s concerns about what was in the care home records. An IRP can only consider what is available to it. But we can see the IRP not only considered the care home records, but also the rest of her medical and care records. We think this was sufficient for it to make a robust decision. We think the IRP acted in line with paragraph 219219 of the National Framework here.

Before it made its decision, did the IRP consider all the relevant evidence

35. Miss D says the IRP did not pay enough attention to her concerns about Mrs T’s needs, even though she had known her for many decades and regularly spoke to her at the time. The IRP said it accepted Miss D had a long and good relationship with her godmother. It said as of 2017 she had not seen Mrs T for around 16 years and may not, therefore, have had as full and true picture of her godmother’s actual needs and issues during that year.

36. The IRP report and notes show it considered how the panel discussed all the available evidence when it was weighing up the disputed domains. We can see the IRP discussed Miss D’s evidence, including with her on the day. We can see it included this in some detail across the domains.

37. We appreciate Miss D’s frustrations with the CHC process. We can see she raised concerns about making sure her views were heard. We consider her specific concerns about records related to particular domains below. We can see the IRP considered the information in Mrs T’s medical and care records. When it explained its weighting for each domain, it referred to specific pieces of information it taken from these. We can also see the IRP had the National Framework in mind when it discussed its weighting of each domain and key characteristic. It outlined how it weighted each domain and explained how its weighting was in line with the National Framework.

38. Paragraph 219 of the National Framework is also relevant to this part of the IRP’s considerations, and we think it acted in line with this guidance here.

Did the IRP clearly explain how it had reached its decision?

39. Under this question, we look at any disputed weightings in the care domains and how the IRP considered the well managed needs principle.

40. Miss D disagrees with how the IRP determined the skin, psychological and emotional, cognition, behaviour and drug therapies and medication domains.

Skin

41. Miss D disagrees with the IRP’s weighting of this domain. She says it should have been weighted as severe. The IRP weighted it as moderate.

42. Miss D says Mrs T often spoke to her about her skin conditions, including before 2017, saying her skin wept and caused her distress. She says the records show Mrs T had issues with her skin during the period and that, for the period directly afterwards, Mrs T’s needs in this domain have been weighted as severe. She says it is not possible a person’s needs could change so much in a short period of time and Mrs T had a managed need here. She said the lack of full care home records may mean Mrs T was already removing bandages for skin conditions before this was recorded in July 2017.

43. The IRP said Mrs T did have a wound on her leg in January 2017 which needed treating by a district nurse. It said this healed in early February and she was discharged from the district nurse’s care on 9 February. The IRP said Mrs T had no other issues with her skin until July when she developed serious skin wounds. It agreed she had fragile skin but could not find evidence to support a severe need in the period under review.

44. The DST gives the following descriptor for a severe weighting:

‘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.’

45. The descriptor for a moderate weighting is:

‘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.’

46. We have not set out the weighting descriptor in between these, but we have noted it in case the evidence supported this rather than what the IRP or Miss D thought.

47. When we look at the records, we can see Mrs T had a leg wound which was weeping clear liquid in January 2017. The records show she was under the care of the district nurse until February when that wound healed. This supports the view Mrs T was at risk of skin breakdown.

48. The records, including Mrs T’s GP and district nursing records, do not mention any other issue with her skin or Mrs T removing bandages for skin conditions until July 2017. We can then see her skin breakdown in July caused her serious mental and physical pain and required district nursing support. Her skin did not heal as it had earlier in the year.

49. We can see Mrs T had fragile skin and developed open wounds. We appreciate this would have been distressing and painful for her and upsetting for Miss D to hear about. We cannot see she had multiple wounds which were not responding to treatment or a specialist dressing in place throughout the period under review.

50. When we weigh up the evidence, it appears the IRP acted in line with the National Framework and DST guidance when it considered Mrs T’s needs in this domain. Its weighting of moderate captures what the records show. There is no indication of what the IRP would have needed to see to give a higher weighting. We have not seen indications of a failing here.

Psychological and emotional needs

51. Miss D disagrees with the IRP’s weighting of this domain. She says it should have been weighted as high. The IRP said Mrs T had no needs in this domain.

52. Miss D says Mrs T was confused and anxious when she moved into the care home. She says Mrs T was considered to have high needs for a later period, so she cannot understand how this can be different for an earlier time. She has also told us the IRP should have taken more note of the Mental Capacity Act which says: ‘it does not matter whether impairment or disturbance is permanent or temporary’. Miss D says this means Mrs T’s needs should not be different for different periods (please note she says this also applies to the cognition domain).

53. The IRP says Mrs T could be anxious about her skin, but there was no evidence she presented with anxiety on a daily basis. It said the records showed her engaging in social activities and she was not resistant to care at that time. It said there was no record of Mrs T needing to engage with psychiatric specialists or her having needs in this domain which impacted on her health and well-being.

54. The descriptor for a high level of need for this domain is:

‘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.’

55. The descriptor for no needs says:

‘Psychological and emotional needs are not having an impact on their health and well-being.’

56. We have not set out the weighting descriptors in between these, but again we have noted them in case the evidence supported one of these rather than what the IRP or Miss D thought.

57. The records say Mrs T was confused about her medication in February 2017 and so asked her carers to administer it for her. She was described in her care plan as sociable, having made friends in the dining room and would socialise with friends. The records show she went out to lunch with a friend in June.

58. The records do not indicate she suffered from mood disturbances or hallucinations. They do not indicate she had withdrawn from most or all of her daily activities or her care planning or support between January and June 2017. In order to award a higher weighting the IRP would have needed to see evidence of this.

59. Miss D believes the Mental Health Act says the IRP should have awarded a weighting consistent with other periods when Mrs T was found to have a primary health need. Section 2 of the Act says the following:

People who lack capacity

(1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.

(2) It does not matter whether the impairment or disturbance is permanent or temporary.

60. This means that, if you are deciding whether someone lacks capacity, whether they have been capable or not before (or are likely to return to capacity at a later time) is not relevant when making a decision. It is their capacity at that point in time which matters. We understand why Miss D thinks this the Act is important, but this does not mean that someone’s level of capacity is or was necessarily fixed either forwards or backwards in time from a decision point.

61. When we weigh up the evidence, it appears the IRP acted in line with the National Framework and DST guidance when it considered Mrs T’s needs in this domain. There is no indication of what the IRP would have needed to see to give a higher weighting here. We have not seen indications of a failing regarding its decision in this domain.

Cognition

62. Miss D disagrees with the IRP’s weighting of this domain. She says it should be severe. The IRP weighted it as moderate.

63. Miss D says the records contain an ‘Anticipatory Care Planning at the End of Life in Care Homes’ document. She says this was included within the cognition section. Miss D says this included a test of Mrs T’s cognitive abilities. She says this was done in March 2017 and reviewed in September 2017 (and again in March 2018), with the sentence ‘information remains the same’ added. Miss D says this shows Mrs T’s cognition was severe for this period, as it has now been weighted as such for later periods of time.

64. The IRP said this sentence most likely indicated Mrs T’s end of life wishes remained the same rather than it referring to her cognitive ability. It said there were indications Mrs T was sometimes confused during the period, including Miss D’s description of conversations with Mrs T. It also said the records showed she was able to make decisions and express her wishes about a number of things including how carers helped with her medication and washing. It said there was evidence she was aware of risk.

65. The descriptor for severe for this domain is:

‘Cognitive impairment that may, for example, include, marked short or long-term memory issues, or severe disorientation to time, place or person.

The individual is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate their basic needs and to protect them from harm, neglect or health deterioration.’

66. The descriptor for moderate for this domain is:

‘Cognitive impairment (which may include some memory issues) that requires some supervision, prompting and/or assistance with basic care needs and daily living activities. Some awareness of needs and basic risks is evident. The individual is usually able to make choices appropriate to needs with assistance. However, the individual has limited ability even with supervision, prompting or assistance to make decisions about some aspects of their lives, which consequently puts them at some risk of harm, neglect or health deterioration.’

67. We have not set out the weighting descriptors in between these. Again we have noted them in case the evidence supported one of these rather than what the IRP or Miss D thought.

68. We can see from the records Mrs T was confused about her medication in February 2017. More than once she slept in her chair rather than her bed at night, but could not say why she had done that. The records also say she was found to be confused on one further occasion in February.

69. We can also see from the records she was concerned in January 2017 that her weeping leg wound would make her bed wet. When she felt she was struggling with her medication, the records show she specifically asked her carers to administer it for her. In June 2017 she indicated she was happy with her current care plan. This indicates she was orientated to time and place, was able to anticipate possible issues in advance and assess risk.

70. We can also see she completed and signed the ‘Anticipatory Care Planning at the End of Life in Care Homes’ document in March 2017. This included her providing answers to a carer as to what she wanted to happen to her, such as regarding a ‘do not resuscitate’ order.

71. The document includes a mental capacity checklist. According to this, Mrs T understood and could retain information about the decisions about to be made and could communicate her decisions. It says she did not have any impairment which would affect how her mind works. We can see on 14 September 2017 the carer wrote in the review section of this that the ‘information remains the same’.

72. We can see why Miss D believes this means all the information in it remained the same, which would include Mrs T’s mental capacity. We cannot comment on whether Mrs T was capable of making a decision then (she has signed the document) as that period is not being reviewed here. But we appreciate why she feels a later eligibility decision indicates Mrs T had a higher level of need between January and July 2017. Miss D believes the statement about the information remaining the same is the most important piece of evidence, which should have changed the IRP’s decision.

73. We can see the IRP did consider Miss D’s views on this in some detail. It also considered all the evidence for this domain and made its decision based on that, which is what we would expect. When we weigh up the evidence contained in the ‘Anticipatory needs’ document, on the balance of probabilities we think the ‘information’ the statement refers to is Mrs T’s wishes about her end of life care. There is no other obvious information it is referring to, as the document is solely about those wishes. During the period of 1 January to 20 July 2017 we have not seen evidence which indicates Mrs T needed to see medical professionals about her cognition or required specialist care for this area.

74. When we weigh up the evidence, it appears the IRP acted in line with the National Framework and DST guidance when it considered Mrs T’s needs in this domain. There is no indication of what the IRP would have needed to see to give a higher weighting here. We have not seen indications of a failing regarding its decision in this domain.

Behaviour

75. Miss D disagrees with the IRP’s decision on this domain. She says it should have been weighted as severe whilst the IRP said Mrs T had no needs.

76. Miss D says it is impossible for a need to go from so low to severe (as it was weighted after 20 July 2017) in such a short space of time. The IRP says Mrs T was normally independent during the time being reviewed, was able to manage her personal care and make herself presentable. It says there is no evidence of Mrs T displaying challenging behaviour such as physical or verbal aggression or disinhibition.

77. The descriptor for severe for this domain is:

‘‘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.’

78. The descriptor for no needs says there is ‘no evidence of challenging behaviour’.

79. We have not set out the weighting descriptors in between these. Again we have noted them in case the evidence supported one of these rather than what the IRP or Miss D thought.

80. We have looked at Mrs T’s records for this period and just after. We can see that after 20 July she was often screaming, removing medical bandages and therefore causing a threat to herself. She also began to demonstrate disinhibited behaviour. We can see her care plans were changed in late July 2017.

81. When we look at the records we cannot see evidence which indicates challenging behaviour before 20 July. There are no indications the care home needed to change its plans, or that Mrs T’s behaviour caused a threat to others or herself. There is no indication she needed specifically skilled carers to deal with her behaviour or that she needed specialist advice (such as from mental health professionals or medication associated with behavioural problems).

82. We understand Miss D’s concerns about what she sees as a dramatic change in weighting. However, a person’s needs can suddenly change. When we weigh up the evidence, it appears the IRP acted in line with the National Framework and DST guidance when it considered Mrs T’s needs in this domain. There is no indication of what the IRP would have needed to see to give a higher weighting here. Mrs T did not display any of the needs shown in the severe descriptor during the period under review. We have not seen indications of a failing regarding the IRP’s decision in this domain.

Drug therapies and medication

83. Miss D disputes the IRP’s weighting for this domain. She says it should be high or severe. The IRP said Mrs T had low needs.

84. Miss D says she cannot see how this could go from low to high needs in the period after this. She says Mrs T could be quite difficult in taking her medication and had difficulties with this associated with her cognition.

85. The IRP say the records show Mrs T recognised she was having trouble with her medication and asked for assistance from her carers in February 2017. It says there is no indication she needed specially trained carers to administer her medication or it was complex to provide. It says her medication regime was not changed during the review period and there is no evidence Mrs T was not compliant with her regime.

86. The descriptor for a severe weighting for this domain is:

‘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.’

87. The descriptor for a high weighting is:

‘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 nonproblematic to manage.

OR Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.’

88. The descriptor for a weighting of low for this domain is:

‘Requires supervision/administration of and/or prompting with medication but shows compliance with medication regime.

OR Mild pain that is predictable and/or is associated with certain activities of daily living.

Pain and other symptoms do not have an impact on the provision of care.’

89. We have not set out the weighting descriptor for moderate needs, but we have noted it in case the evidence supported this rather than what the IRP or Miss D thought.

90. We can see from the records Mrs T required carers to administer her medication regime. We have not seen evidence this needed to be done by a registered nurse or a carer with specialist training. The records for this period do not indicate Mrs T was non-compliant (we can see she did begin resisting her regime after 20 July 2017) or that she was suffering from pain which had a significant effect on her care or the other domains. The records do not indicate she was suffering from a severe pain which was not responding to treatment at that time. The records say Mrs T was not suffering from any drug sensitivities.

91. We understand Miss D is concerned about her godmother’s medication regime. Mrs T clearly had worries about administering it herself. But we have not seen indications of her having needs between January and July 2017 which would have led the IRP to award a higher weighting. When we weigh up the evidence, we feel the IRP acted in line with the National Framework when determining the weighting for this domain. We do not think it got something wrong here.

Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?

92. Miss D disagrees with how the IRP considered the four key characteristics, which it used to determine whether Mrs T had a primary health need. She believes the IRP was wrong to say Mrs T did not have a primary health need. She has not given us specific reasons why she disagrees with the IRP’s consideration of the key characteristics. We have looked at whether there is anything obviously incorrect in how it looked at these.

93. The IRP said it did not take the view Mrs T’s needs were beyond that which could be expected of a local authority during the period under consideration.

94. Practice guidance 3 (PG3) in the National Framework sets out how to consider the key characteristics. These are the nature, intensity, complexity and unpredictability of the person’s needs. PG3 includes some questions for each characteristic to help guide them in how to think about it. However, the National Framework does not expect an organisation to prescriptively answer each question – they are prompts.

95. For the nature characteristic, the IRP needs to consider 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.

96. We can see the IRP report explains the nature of Mrs T’s conditions and how the domains interacted with each other. It considers the needs which followed from these and how her carers and medical professionals met those needs. This is what we would expect it to do.

97. We can see from the records Mrs T did not require any specialist care at that time, aside from the district nurse seeing to her wounds up to 9 February. Her medication and care were not hard to administer and there were no changes to her care plans until late July, after the period under consideration.

98. The IRP said Mrs T’s care was routine and not above what a local authority could provide. When we weigh up the evidence, we have not seen indications the IRP got something wrong when making its decision on this characteristic.

99. The intensity characteristic is about both extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained or ongoing care (‘continuity’).

100. We can see the IRP considered the totality of Mrs T’s needs and the support she needed as a result in its report. It said she needed care across a number of domains, but she was able to act independently in a number of areas. It said there was no evidence she needed care outside that which was already planned or an intense level of care during a 24-hour period.

101. We have considered Mrs T’s records and have not seen evidence the intensity of her needs indicated a primary health need at that time. When we weigh up the evidence, we have not seen indications the IRP got something wrong when making its decision on this characteristic.

102. The complexity characteristic is concerned with how the person’s needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/ or manage the care. 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.

103. We can see the IRP report considers the complexity of Mrs T’s needs, including what her carers needed to provide for her. This includes that they needed to be alert, vigilant and monitor and observe her closely. It said her care regime did not need an increased level of skill though and her health and social needs at that time were primarily about having a safe environment.

104. When we weigh up the evidence, we have not seen indications Mrs T’s care needs were complex to manage at that time. There are no indications she needed specialised medical support or carers or that her needs were beyond what the local authority could provide. The IRP appears to have described her needs thoroughly here. We do not think it got something wrong when it considered the complexity characteristic.

105. The National Framework says the unpredictability characteristic is about the degree to which needs fluctuate and thereby cause challenges in their management. It does not mean whether everything a patient does can be predicted.

106. The IRP said there is no evidence Mrs T’s care needs changed significantly on a daily basis at that time. It said there is no evidence her carers could not anticipate her needs or that her care plans did not meet those needs. It said there was no evidence her needs fluctuated between 1 January and 20 July 2017.

107. When we weigh up the evidence, we think the IRP report explained Mrs T’s needs and how they interacted in detail for each characteristic. The report considered the questions for each characteristic as we would expect it to and provided a detailed explanation of why it made its decision.

108. We understand why Miss D thinks Mrs T had a primary health need at this time. She was clearly not well. When we weigh up the evidence, we have not seen evidence her needs or care plan to deal with these changed suddenly or unexpectedly or that her care was particularly difficult to manage. Carers appear to have known how to deal with her and did not need a higher level of skill or training to do this. It appears the IRP considered the Mrs T’s needs in the four characteristics in line with the National Framework. We have not seen an indication of a failing here.

North East and North Cumbria Integrated Care Board

109. Miss D says the ICB did not refund CHC costs for Mrs T as it should have done. She says she had to both remind the ICB that it had not refunded costs for a particular period of time and then had to correct how it had calculated interest payments it owed. Miss D says the ICB then unfairly sent her a letter saying her behaviour was unreasonable, despite having made these mistakes. She found this to be upsetting and stressful.

110. The ICB says it has acknowledged that it did not refund Mrs T’s estate for the period of 1 January to 18 July 2018 as quickly as it should have done, but that it has done that now. It says it did correct some issues regarding the interest due and has apologised for this. It says not everything Miss D said how the interest should have been calculated was correct. The ICB says Miss D made excessive contact with it between September 2023 and March 2024 and so it wrote to Miss D to restrict her contact with it as a result.

Reimbursement

111. We can see from the records Miss D did alert the ICB in September 2023 that it had not yet reimbursed the period which the ICB had confirmed in February that Mrs T had been eligible for CHC. We cannot say from the records the ICB would not have reimbursed this if Miss D had not reminded it, but we can see her communications triggered it into doing so.

112. We can also see the ICB did recalculate the interest following its correspondence with Miss D. It has accepted it made some errors in how it calculated interest. It acknowledged it had used an incorrect RPI rate and said it has amended and corrected this. The ICB did not accept all of the points Miss D made about how it should have calculated the interest and did not make any further changes.

113. We understand how important this issue is to Miss D. We can see the ICB has now put things right. It repaid the necessary CHC fees (including the interest) for the period she highlighted in February 2024.

114. We can see the ICB was slow in reimbursing the funded care for this period. It then needed to recalculate the interest. As a result, Miss D felt she needed to follow this up with emails and calls. She also asked a retired solicitor for advice on what interest level the ICB should pay.

115. We do not think there is good reason to ask the ICB to do anything more. It put things right when it reimbursed Mrs T’s estate with the costs of her care. We accept Miss D had to do more than she should have to prompt the ICB to do this and to calculate the right amount of interest. She says this was distressing for her and we accept that. When we weigh up the evidence, we have not seen any indication this had a significant impact, for example that it stopped her going about her daily life. When an organisation gets things wrong that have a low level impact, we have to consider if it is proportionate for us to investigate this further. We do not think this is, given the impact Miss D has described.

Unreasonable behaviour

116. In March 2024 the ICB wrote to Miss D. It said she had made an excessive number of telephone calls and emails to it since September 2023. It said she had made over 100 forms of contact with the ICB to its teams about Mrs T’s CHC payments between September 2023 and March 2024. It said she had also been abusive about a member of its staff and made unreasonable demands.

117. Miss D says she needed to contact the ICB in order to get the issues she had highlighted resolved. She says the ICB encouraged her to make contact with it, including sending her a complaint form. She says she was not verbally aggressive to ICB staff but it called her whilst she was in a restaurant and not able to clearly understand the conversation. Miss D has also told us the ICB sent her a complaint form to complete. She feels it was then unfair for it to complain about her contacting it.

118. The relevant standard is the ICB’s complaints policy, which describes its procedure for what it calls habitual or persistent complainants. It says a habitual or persistent complainant is someone whose actions include being abusive or making excessive number of contacts with the ICB, or placing unreasonable demands/expectations on its staff. It does not define how many contacts this would be.

119. We agree Miss D needed to contact the ICB to ask about the reimbursement and to make her complaint. The ICB was right to send her a complaint form so she could complain. This does not mean it should have been prepared to accept excessive contacts. We cannot say the ICB was wrong to describe her responses as excessive or persistent, as over 100 contacts is a significant amount. This included sending the same thing on multiple occasions and chasing responses very quickly after she had emailed, when the ICB had had little time to review and respond.

120. This appears to have been grounds for the ICB for restricting her contact, in line with its policy.

121. The records show the ICB terminated a telephone conversation with Miss D in December 2023. This was because the member of the ICB felt Miss D’s behaviour was not acceptable. Miss D disputes what happened. We do not have independent evidence of what was said in the conversation in December 2023. We have no reason to disbelieve either party. Based on the available evidence we could never conclude the ICB was wrong to end the call. Even without this, Miss D’s behaviour met the criteria for restriction in the ICB’s complaints policy.

122. We have not seen evidence the ICB did not follow its complaints procedure. It also said it would still accept written communication from Miss D, so we cannot say it prevented her from contacting it entirely.

123. We understand the issue of the repayments was very important to Miss D. We also appreciate she feels upset by the ICB saying she was a persistent complainant. We hope we have clearly explained our views on these issues. We wish her well for the future and thank her for raising her concerns with us.

1. We have carefully considered Miss D’s complaint about NHS England. We have seen no indication that anything went seriously wrong in how its independent review panel (IRP) made its decision about Mrs T’s eligibility for continuing healthcare (CHC) funding between 1 January and 20 July 2017.

2. We appreciate how highly distressing Mrs T’s last years were for her and Miss D. We also understand Miss D found the CHC funding appeals process upsetting and confusing. We hope this statement will give her more clarity on why the IRP made its decision.

3. We have also considered Miss D’s complaint about the ICB. The ICB has paid the CHC fees, including the relevant interest, for a period in 2018 that it had retrospectively confirmed Mrs T was eligible for CHC. We do not think it needs to do more. We think it followed the guidance on persistent complainants in its complaint policy when it wrote to Miss D in March 2024.

4. We understand Miss D feels she had to contact the ICB about the unpaid fees in September 2023 and therefore it has treated her unfairly. We appreciate how upsetting and frustrating she says communicating with the ICB has been. We hope our statement will help to bring her some closure about what happened.