NHS England

4. Mrs T complains about the outcome of the Independent Review Panel (IRP), convened by NHS England on 13 July 2023 to consider NHS Sussex Integrated Care Board’s (ICB) decision that her late mother, Mrs Z, was not eligible for NHS continuing healthcare (CHC) funding for the period of 22 March 2017 to 24 May 2017.

5. Mrs T believes for the period the IRP reviewed, Mrs Z should have been entitled to CHC funding to meet the cost of her care. Mrs T believes the IRP did not properly consider her mother’s needs in the following domains:

• nutrition • psychological and emotional needs • cognition.

6. Mrs T also believes the IRP did not properly consider the nature, complexity, intensity and unpredictability of Mrs Z’s needs, which she believes show she had a primary health need.

7. Mrs T also raises procedural concerns.

8. Mrs T says these failings have resulted in a substantial financial loss to her mother’s estate.

9. Mrs T would like NHSE to reconsider its decision.

10. Continuing healthcare (CHC) funding is NHS funding provided to cover the health and social care needs of people with complex health needs.

11. A checklist is used to determine a patient’s needs. A positive checklist indicates a patient has high needs and so is to be discussed at a meeting attended by different clinicians (MDT).

12. A decision support tool (DST) is a national tool for CHC funding. The tool brings together information from the assessment of a patient needs (checklist) to facilitate evidence-based recommendations and decision-making regarding eligibility for NHS Continuing Healthcare (CHC) during the MDT.

13. An IRP is an independent review panel used to review the MDT decision regarding CHC funding.

14. Mrs T raises concerns about NHSE’s decision her mother was not eligible for CHC funding.

15. Mrs Z’s eligibility for NHS Continuing Healthcare was first assessed in May 2017, with the Decision Support Tool (DST) being completed on 25 May 2017.

16. The ICB decided Mrs T was not eligible and this decision was upheld at the local resolution stage. In this report, the DST completed in May 2017 is referred to as ‘the 2017 current DST’. This assessment was not under review by the IRP having been considered by a differently constituted IRP in August 2019.

17. The ICB subsequently completed a retrospective review for the period from 22 October 2014 to 24 May 2017.

18. According to the ICB’s procedure for retrospective assessments, a nurse assessor prepared a draft DST on 11 March 2021. This was then shared with Mrs T for comments.

19. On 30 April 2021, a multi-disciplinary team (MDT) finalised the DST and decided Mrs Z was eligible for the period from 22 October 2014 to 21 March 2017 but not eligible from 22 March 2017 to 24 May 2017.

20. In this report, the DST completed on 30 April 2021 is referred to as ‘the retrospective DST’. It considered a range of evidence, including information contained within the 2017 current DST.

21. Mrs T was dissatisfied with the outcome and submitted an appeal on 10 November 2021 in respect of the period from 22 March 2017 to 24 May 2017.

22. Initially, the ICB declined to accept the appeal, on the basis the period from 22 March 2017 to 24 May 2017 had already been considered by the IRP which reviewed the 2017 current DST. However, following further discussions with NHSE, the ICB agreed to consider the appeal.

23. The local resolution meeting (LRM) took place on 6 September 2022, and Mrs T and Mrs Z’s son attended. Following the meeting, the ICB upheld the decision Mrs Z was not eligible for the period from 22 March 2017 to 24 May 2017. Mrs Z was informed of the outcome by letter dated 4 October 2022.

24. Mrs T was dissatisfied with the outcome and requested an Independent Review. The reasons were set out in the Request for Independent Review dated 28 February 2023.

25. Mrs T also sent a letter dated 19 May 2023 containing additional notes for the IRP.

26. The IRP upheld the ICB’s decision and found Mrs Z was not eligible for CHC funding for the period of 22 March 2017 to 24 May 2017.

30. It is our role to decide whether NHSE’s IRP acted in line with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2022) when it considered whether Mrs Z was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHSE should follow when considering if someone is eligible for CHC.

31. We cannot consider the discretionary decisions the IRP made when it decided on eligibility. This includes the decisions it makes based on clinical judgement and clinician’s opinions. We can only consider if the IRP has followed the National Framework. This means we can only uphold a complaint about a CHC eligibility decision if we find the IRP did not follow the National Framework when it made its decision.

32. The IRP reviews if the ICB should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the ICB’s procedures when it was coming to its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the ICB made a mistake, it can:

• recommend the ICB reconsiders if the patient had a primary health need, and • recommend the ICB addresses any procedural faults the IRP identified.

33. It is important to note that NHSE’s decision supersedes all previous eligibility decisions. Therefore, procedural issues only have a direct substantial effect on the overall eligibility decision in exceptional circumstances.

34. Moreover, our remit solely concerns the review of IRP’s decision-making process and whether it followed the National Framework in coming to its decision. We do not review the ICB’s original decision, nor can we comment on whether a different process should have been followed by the ICB. With regards to procedural issues raised by complainants, our role is to review whether the IRP adequately responded to the issues raised.

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

35. Mrs T has told us she disagreed with how the IRP considered several of the domains the health service uses to determine a person’s care needs.

Nutrition

36. In her complaint to us, Mrs T explains her mother’s needs in the nutrition domain should have been weighted as High, as she continued to lose weight despite being sedentary and high calorific diet.

37. To see a weighting of High in this domain, the IRP would need to see the following:

‘Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.

OR Subcutaneous fluids that are managed by the individual or specifically trained carers or care workers.

OR Nutritional status “at risk” and may be associated with unintended, significant weight loss OR Significant weight loss or gain due to identified eating disorder.

OR Problems relating to a feeding device (for example PEG) that require skilled assessment and review’.

38. The ICB assessed the level of need as low, the IRP agreed with this assessment.

39. The DST describes Low needs as the following:

‘Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).

OR Able to take food and drink by mouth but requires additional/supplementary feeding’.

40. In the written submissions and at the IRP meeting, the family said that they had not been aware that the level of need had been changed from High to Low by the ICB.

41. The family informed the IRP about the help their mother needed at mealtimes. If food was left on her left side, she would not be able to see it. The turnover of staff meant the food was sometimes positioned incorrectly.

42. If the family were there, they would see the problem and sort it out. They also brought in food their mother liked such as cucumber sandwiches and treats.

43. The ICB thought there had been some confusion. The eligibility panel had changed the level from High to Low. At the local resolution stage, there was no discussion of the domain. The ICB considered this was because the family were unaware of the change.

44. The ICB said it had some reservations about the change from High to Low. It could understand why the eligibility panel had reached their view because Mrs Z’s body mass index (BMI) remained acceptable despite the weight loss.

45. Body Mass Index (BMI) is a tool that estimates the amount of body fat by using height and weight measurements. The optimum range for adults is to have a BMI of between 18 and 25. Measurements either side of this would indicate a patient is underweight (below 18) or overweight (above 25).

46.  Although the GP recommended a high calorie diet, Mrs Z was not referred for dietic support. Considering Mrs Z’s weight loss, the ICB would have left the level of need as High.

47. In terms of the changes, IRP said it could understand why some confusion had arisen for the family. The family were consulted on the draft retrospective DST and the subsequent change from High to Low by the eligibility panel was not drawn to their attention.

48. The panel also explained the confusion may have been exacerbated by what happened with the 2017 current DST. The appropriate level of need had initially been assessed as Low, but this was changed to high by the eligibility panel.

49. When considering the evidence, the IRP found Mrs Z did not have dysphagia (difficulty swallowing), a need for subcutaneous fluids, an identified eating disorder or issues relating to a feeding device. Subcutaneous fluids are a method of delivering hydration and electrolytes directly under the skin for gradual absorption into the bloodstream.

50. The IRP also acknowledged Mrs Z’s weight loss. In October 2016, she weighed 80.4kg, and during the period under review she weighed 63kg. The IRP considered she was not underweight with a BMI of 23, which was within the healthy range.  It also found Mrs Z’s malnutrition universal screening tool (MUST) score was recorded as zero.

51. ‘MUST’ is a five-step screening tool to identify adults, who are malnourished, at risk of malnutrition (undernutrition), or obese. It also includes management guidelines which can be used to develop a care plan.

52. The panel concluded it would not be appropriate to consider Mrs Z as being at ‘nutritional risk’ during the period under review. The IRP also acknowledged Mrs Z had Type 2 diabetes.

53. It said there was no indication that dietary adjustments for diabetes contributed to her weight loss. She had been prescribed medication for diabetes, but this had been stopped. It considered her needs did not fall within the High descriptor for this domain.

54. The IRP said Mrs Z remained able to and preferred to feed herself and considered she could only use her right-hand. It recognised her food had to be positioned correctly on her right side and cut into bit-sized pieces.

55. The panel concluded Mrs Z needs did not fall within the descriptors of the Moderate level of need.

56. The IRP found the appropriate level of need was Low.

57. While there is no clear rationale as to why the ICB changed the level of scoring in nutrition from Low to High, the evidence shows an appropriate score for the domain of nutrition is Low.

58. The evidence shows Mrs Z was able to feed herself but required assistance to cut her food up as she could only use her right hand.

59. Mrs Z was assessed and had no problem with dysphagia (difficulty in swallowing) and only required reminding to ensure she cleared the left side of her mouth.

60. The daily care records note throughout the review period Mrs Z ‘ate and drank fairly well’

61. Mrs Z’s weight was monitored and recorded with her BMI being recorded. Her BMI and weight records show when she was admitted to the care home, she was overweight and this declined slowly over a period of time.

62. Mrs Z’s weight was stable and as were her BMI, calculations showing she became a healthy weight after being admitted. Her MUST score was zero.

63. Her score of zero showed she required monitoring only, and this was done via monthly weights. The records show she lost some weight in August 2017 (outside the review period) but there is a note explaining she had not been very well. By the next weigh in she had recovered the weight she had lost.

64.  The records also show Mrs Z’s care plan details the actions required from the registered nurses which includes every month to ‘monitor [Mrs Z’s] weights and MUST score, every month complete the Nutritional Care Pathway form. If there is a significant weight loss, consult the GP’.

65. We cannot find any evidence to support Mrs Z was referred to dietetic services. The records show Mrs Z was assessed as being able to eat and swallow foods and fluids of a normal consistency after an initial loss of weight (where she was overweight at 80.4kg) she was then at a stable weight during this period.

66. Our adviser comments the IRP describes Mrs Z’s needs comprehensively and is well discussed. Our adviser also says the panel were appropriate in awarding the score of Low in this domain.

67. We recognise Mrs T’s concerns about her mother’s needs in the nutrition domain. We think the IRP acted in line with the National Framework when it considered Mrs Z’s needs in this domain. We have seen no indication of failings in how the IRP considered this domain.

Psychological and emotional needs 68. Mrs T explains her mother’s needs in the psychological and emotional needs domain should have been weighted as High.

69. The DST describes 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.’

70. The ICB assessed the level of need as moderate, the IRP agreed with this assessment.

71. The DST describes moderate needs in this domain as:

‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being.

OR Due to their psychological or emotional state, the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.’

72.  In her complaint to us, Mrs T says her mother had been seen by various ‘experts’ over the years, all of which reached the same conclusion. Her eviction from the first care home was in part due to the lack of success of the consultant clinical neuropsychologist.

73. Mrs T says the IRP report agrees in part with the Moderate score because ‘She still maintained eating and drinking’. Mrs T contends this as the nutrition domain highlights an unexplained weight loss despite being on a fortified diet and being immobile.

74. She says there are conflicting comments in different domains. Mrs T says the family evidenced no improvement or reduction in needs during this period for her mother’s psychological and emotional needs, as in many of the other domains these symptoms worsened.

75. The family informed the panel they had been told by the care home manager the community mental health team (CMHT) had visited and said they could not do any more for their mother. The family were not told Mrs Z was being discharged because she had improved.

76. They did not see the two letters from the CMHT until after the local resolution stage, but the letters did not say that she had improved. It appeared to be more to do with the home managing her needs.

77. The family did not understand how the above could be a basis for ending eligibility and it was contrary to the guidance.

78. The IRP discussed the evidence and found Mrs Z continued to experience anxiety, hallucinations and distress. It said the anxiety and distress manifested itself in shouting out or banging.

79. The IRP recognised there was likely some under-reporting by the care home notes which state this was occasional. This was supported by the content of the 2017 DST which found staff reported Mrs Z called out daily and shouted consistently. Mrs Z would generally be calling for help, but staff found it difficult to reassure her. The shouting often included verbal abuse of staff.

80. The IRP discussed the medications she was prescribed, and the medication administration record (MAR) charts included in the file covered only part of the period under review.

81. The daily care records found Lorazepam was given for agitation on 27 March 2017. The 2017 current DST indicated the last time that she was given it before that assessment was on 1 May 2017.

82. For a High level of need based on the first descriptor, the IRP said there must be evidence of a severe impact on health and/or well-being. The IRP was unable to identify evidence of this in the records.

83. The IRP found evidence of weight loss (discussed in nutrition) but Mrs Z was continuing to eat and drink. She was sometimes unsettled at night but there was no indication of concerns being raised with the GP about sleep deprivation. The carers were able to provide personal care and her skin was intact. There were no changes to the psychotropic medication.

84. The IRP also considered whether the second descriptor of the High level of need applied but could not find evidence Mrs Z had withdrawn from all attempts to engage in her support and/or daily activities.

85. It referred to the evidence which indicated she continued to talk to carers and family and to watch TV.

86. The IRP concluded the appropriate level of need during the period under review was Moderate based on the first descriptor of that level of need.

87. The panel recognised Mrs Z could not be readily reassured and the impact on her health and wellbeing.

88. The IRP recognised and discussed the family’s concerns about the distinction the ICB had drawn between the position during the period now under review and the position before then (when the ICB had awarded a High level of need).

89. The IRP referred to the retrospective assessment for the entirety of the original assessed period and could not identify any significant differences between Mrs Z’s presentation in early 2017 and her presentation during the period under review.

90.  The IRP’s understanding of CMHT’s correspondence was she was being discharged because the service could not meaningfully add to what the home were doing to support her, not because she had ‘improved’.

91. The panel said the family correctly identified the National Framework says decisions about eligibility cannot be based on the ability of the care provider to manage care or the fact that a need is well-managed.

92. The IRP did not used the ability of the home to manage needs or the need for specialist involvement as a touchstone for assessing the appropriate level of need.

93. The IRP based its decision on all the available evidence for the period under review and the content of the descriptors of the High level of need.

94. The IRP recognised these comments offered no satisfactory explanation as to why the level of need was assessed as High before 22 March. The IRP speculated there might be a coherent explanation based on greater stability in Mrs Z’s needs from in or around late 2016 and early 2017, with the date of 22 March being chosen only because of the difficulty of identifying an earlier cut-off date.

95. The panel says the IRP’s role was to make its own recommendation on the appropriate level of need for the period under review. It says it would not be appropriate to alter or revise its judgement because the ICB had chosen to award a High level of need for the period immediately prior to that.

96. Our adviser says the IRP based its recommendation on the evidence which was succinct to the area of psychological and emotional needs.

97. The records show reports of Mrs Z experiencing hallucinations, significant anxiety and mood swings, and paranoia. Mrs Z thought people were poisoning her and keeping her prisoner in the home.

98. The records show her anxiety was unmanageable in the previous care home setting but once living in an appropriate residency and having been prescribed the correct medication these symptoms settled.

99. A CMHT record from a clinical practitioner dated 22 March 2017 notes the care home manager reported while Mrs Z can be uncooperative at time, ‘the staff now feel they have gotten to know her and what she likes and dislikes’.

100. Her medication was discussed, and compliance with the medication. The manager agreed the carers were meeting her needs and she was responding to an established routine. At the meeting, the manager agreed the ‘carers are meetings her needs and she is responding to an established routine, she no longer requires [clinical psychiatric nurse] input’.

101. Our adviser says the IRP did not diminish or discount the fact Mrs Z had psychological and emotional issues and recognised this in its score of Moderate. As such, the IRP considered this domain whilst observing the well managed needs principle.

102. The principle of ‘well-managed needs’ ensures care assessments focus on the underlying nature, intensity, complexity, and unpredictability of a person’s needs, rather than just how well those needs are being controlled or managed through effective care. It prevents situations where well-managed needs appear diminished and ensures individuals are not unfairly denied support or funding, particularly in decisions about CHC eligibility.

103. Having viewed the records, and input from our adviser, we consider the IRP acted in line with the National Framework when it considered Mrs Z’s needs in this domain. We acknowledge Mrs T feels her mother’s needs were High, but the evidence suggests this domain was weighted appropriately according to the moderate descriptor for psychological and emotional needs. We have seen no indication of failings in how the IRP considered this domain.

Cognition

104. Mrs T felt her mother’s needs should have been weighted as High. The ICB assessed Mrs Z’s needs in the cognition domain as moderate between 22 March 2017 to 31 March 2017, and High between 1 April 2017 to 24 May 2017. The IRP agreed with the ICB’s weighting.

105. A Moderate weighting in the cognition domain is described by the DST as:

‘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.’

106. A High weighting in the cognition domain is described by the DST as:

‘Cognitive impairment that could, for example, include frequent short-term memory issues and maybe disorientation to time and place. The individual has awareness of only a limited range of needs and basic risks. Although they may be able to make some choices appropriate to need on a limited range of issues they are unable to consistently do so on most issues, even with supervision, prompting or assistance. The individual finds it difficult even with supervision, prompting or assistance to make decisions about key aspects of their lives, which consequently puts them at high risk of harm, neglect or health deterioration.’

107. Mrs T informed the panel Mrs Z had been assessed as having a High level of need in the 2017 current DST which had looked at evidence for three months preceding 25 May 2017. The family said, although she could construct sentences, the content of her communications was nonsense.

108. The family said Mrs Z hallucinated. For example, she sometimes believed that one or other of her children had been murdered or kidnapped.

109. The family also reported she consistently recognised them and could identify she was in a nursing home. but this was not consistent.

110. The IRP found Mrs Z was stated to have had a Mini-Mental State Evaluation (MMSE) of 25/30 in 2015. In November 2016, when she was formally diagnosed with dementia, her score was reported to be 2/28, which was a very significant decline, while there may have been daily fluctuations.

111.  The Mini-Mental State Examination (MMSE) is a commonly used tool in healthcare to assess a person’s cognitive function. It helps identify potential cognitive impairments, such as those associated with dementia, Alzheimer’s disease, or other neurological conditions.

112. The MMSE is scored out of 30 points. A score of 25 out of 30 typically indicates mild cognitive impairment. It may also fall into the normal range for some individuals depending on their age, education level, or cultural background.

113. A score between indicates 26–30: normal cognition, 21–25: mild cognitive impairment, 10–20: moderate cognitive impairment, less than 10: severe cognitive impairment.

114. It considered the ICB’s explanation at the IRP which said Mrs Z had a mental capacity assessment by a Deprivation of Liberty Safeguards (DoLS) practitioner in November 2016 for the purposes of assessing her capacity to decide whether she could continue to live at the care home.

115. The assessor concluded while Mrs Z may experience short-term memory difficulties, this did not prevent her from making this decision for herself.

116. The IRP also agreed with the ICB as there was evidence of some further decline since then. It acknowledged there was no further reassessment of Mrs Z’s capacity to decide where she wanted to live. The 2017 current DST, which was completed on 25 May 2017, recorded the family and the home manager had identified Mrs Z was variable with her orientation to time.

117. The panel referred to the nursing home records which indicated Mrs Z generally continued to be able to make simple choices about the menu or clothes.

118. The IRP concluded there was evidence of a gradual change of needs. It said noting the difficulties of pinpointing a date where a change is gradual, the IRP considered the ICB’s approach of using 1 April 2017 was reasonable as it linked with nursing home reports of increased confusion in that month, including to the GP notes.

119. The IRP concluded the appropriate level of need was Moderate up to and including 31 March 2017 and High thereafter.

120. The evidence shows Mrs Z was initially mildly confused and she would become more confused when she had an infection. The evidence also shows she required 11 courses of antibiotics for chest and urine infections, and she responded well to the treatment.

121. Mrs Z’s GP notes she ‘may have some capacity to make some decisions but may lack the capacity to make complex decisions’.

122. Our adviser comments the weightings in the domain of cognition reflect the progression of Mrs Z’s illness of vascular dementia, as the change was not rapid but gradual over time. As the period progresses, the evidence shows a gradual decline in Mrs Z’s cognitive ability.

123. As such, it was appropriate the domain was weighted as Moderate up until 31 March 17 and thereafter as High.

124. We also considered whether IRP provided an appropriate explanation when considering the changes in the moderate level to high level with a difference of one day.

125. The report evidences the panel carefully considered the differences between the two periods of care, recognising changes in the level of need based on evidence from GP records, including dated entries. It also acknowledges when the care home informed the GP about concerns regarding a change in Mrs Z’s presentation.

126. Our adviser states while it is challenging to pinpoint the exact timing of such changes, decisions rely on determining the facts from available evidence and identifying an appropriate date for focus, particularly in retrospective reviews.

127. We have carefully analysed the evidence, and with input from our adviser, we consider the IRP took thoughtful and appropriate consideration of this domain in line with the National Framework. While we understand how important this issue is to Mrs T, we have not identified anything that went wrong in this area.

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

128. The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. The National Framework separates this test into four key characteristics: nature, intensity, complexity, and unpredictability. This test is used to establish if the quantity or type of a person’s care needs are more than what the local authority can provide. This indicates they have a primary health need, which in turn indicates they are eligible for CHC.

129. The National Framework sets out questions for the IRP to consider to help establish a person’s level of need. They are outlined in ‘Practice Guidance 3, When identifying a primary health need, how should the four key characteristics be approached?’ (PG3). The National Framework is clear the questions it provides are not meant to be strictly applied and are there to guide the IRP’s considerations. We use these questions when we are looking at whether the IRP properly considered the four key characteristics of Mrs Z’s needs.

130. Below, we will consider the IRP notes, and submissions as Mrs T says she disagrees with the rationale for the four key indicators. We have considered whether the IRP’s decisions and rationale about the four key indicators were clinically accurate. We will consider each key indicator in turn.

Nature

131. The National Framework says this characteristic should ‘describe the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them’.

132. Mrs T disagrees with the IRP’s summary of her mother’s needs it provided in its consideration of the Nature characteristic.

133. In her complaint to us, Mrs T has explained comprehensively about the needs her mother had, which included monitoring and assistance in all aspects of her care.

134. She says the nature of Mrs Z needs continued to be over and above the level of care expected to be provided by the local authority. Her needs did not improve, reduce or disappear, they were managed within the home.

135. In the written submissions and at the IRP meeting, the family informed the panel their mother had been assessed by the ICB as having a Primary Health Need from 22 October 2014 to 21 March 2017 but not from 22 March 2017 to 24 May 2017. The ICB relied on the discharge from CMHT. The family told the IRP it did not understand this and felt the Primary Health Need had not changed.

136. The IRP outlined how it considered the types of interventions Mrs Z needed from her carers to keep her safe. It talked about these interventions across a range of the domains, and we can see it discussed the impact of these needs on Mrs Z’s overall health and well-being.

137. It took information from its discussions about the ten domains and recognised the level of skill needed to keep Mrs Z safe and well.

138. The IRP recognised Mrs Z required assistance with all the activities of daily living which included eating and drinking, washing and dressing, taking medication, interaction, accessing care services as required. While she could feed herself, she required carers for anything which required changing positions or using two hands.

139. The panel recognised how Mrs Z’s care was impacted by her psychological, emotional and behavioural needs but the care home was able to provide this care without any complex techniques and maintained a routine. Her personal care was also not compromised.

140. The IRP found her medication regime was stable and Lorazepam was given infrequently. When she was discharged from CMHT in March 2017, the panel considered no indication of a re-referral was required during the period under review.

141. The panel discussed how most of Mrs Z’s needs could be met by carers with training in how to look after dementia patients. The additional knowledge and skill required for the oversight of her care such as administering medication or taking blood samples were taken care of by the registered nurses at the care home.

142. It also recognised while there was a deterioration in Mrs Z’s cognition, there was no evidence of a rapid deterioration. It considered there was some weight loss, but her BMI was in the healthy range and there was no indication for a referral to the dietician.

143. The panel also said her pain management was not complex, and the GP input did not require staff to carry out any additional care interventions except for implementing a high calorie diet.

144. While Mrs Z’s behaviours were challenging, the IRP considered measures were in place and were straightforward. It found there was limited nursing input and no requirement for other health services beyond the usual GP services.

145. The IRP concluded the nature of Mrs Z needs did not show that she had a Primary Health Need.

146. Paragraph 3.3 of the National Framework sets out the following questions to consider when considering this need:

‘Questions that may help to consider this include:

• How does the individual or the practitioner describe the needs (rather than the medical condition leading to them)? What adjectives do they use?

• What is the impact of the need on overall health and well-being?

• What types of interventions are required to meet the need?

• Is there particular knowledge/skill/training required to anticipate and address the need? Could anyone do it without specific training?

• Is the individual’s condition deteriorating/improving?

• What would happen if these needs were not met in a timely way?’

147. Based on what we have seen so far, the evidence echoes what was explained by both Mrs T and the IRP. Mrs Z had a vast amount of care needs, which she needed assistance with. On review of the available information, Mrs Z did not need any significant interventions from medical professionals to help care for her.

148. For example, staff were able to follow an overall and consistent pattern in Mrs Z’s eating and drinking habits. We also know they were able to seek well input from the GP over several times to assess Mrs Z’s needs varying over several domains.

149. The clinical evidence supports the decision made in respect of the nature of Mrs Z’s presentation. The IRP considered the care plans in respect of the identified care needs and found although she had features of vascular dementia, she was still able to carry some personal care tasks independently such as eating and making simple choices.

150. We can see the IRP identified Mrs Z required all her care provided by carers with the oversight of a registered nurse. The panel acknowledged while Mrs Z did have some challenging behaviours and was affected by her psychological and emotional needs which were at times a barrier to care provision, the techniques used by the care home were not complex and focused on maintaining a routine.

151. Our adviser says Mrs Z’s cognitive decline, which influenced all other aspects of her life was gradual in line with the trajectory of her illness.

152.   While Mrs Z had many needs, this was being managed effectively and in a timely manner within the limits of what the local authority could provide. There is no evidence to suggest that caring for Mrs Z was problematic, as this was being carried out by professionals who knew Mrs Z, and how to address her needs.

153. Mrs Z’s needs were managed affectively by the care home, and staff who recognised her needs. As such, we have seen no indications of failings in the IRP chair’s reasoning she did not have an overall high level of need in this key indicator.

154. Our adviser explains the clinical evidence supports the decision made in respect of the nature of Mrs Z’s presentation.

155. We understand how strongly Mrs T feels about her mother’s needs. Considering the evidence there is no indication the nature of Mrs Z’s presentation showed she had a Primary Health Need.

Intensity

156. The National Framework says this characteristic ‘relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’)’.

157. Mrs T disagreed with the way the IRP considered the intensity characteristic. Mrs T explains in her complaint to us the intensity of need in her mother’s care related to her distress, anxiety, paranoia, delusions and behaviours. She says there was evidence this was frequent during the day and at night.

158. She says the family witnessed it continuously during each visit. Mrs T says her mother’s cognitive impairment, psychological and emotional state left her in a constant state of turmoil believing cruel things were happening around her, to her or to family members.

159. Mrs T referenced the difficulties her mother experienced in communication, during care interventions due to her behaviour, her immobility, and frequent monitoring of her skin integrity. Mrs T says the intensity in her mother’s needs continued, did not improve, reduce or disappear.

160. In considering the intensity characteristic, the IRP recognised Mrs Z had care needs across several domains.

161. The IRP found she required two carers for interventions involving movement, and one carer for other interventions. Her care needs were managed during planned intervals and did not require constant supervision.

162. While the IRP considered Mrs Z’s challenging behaviour, it said there was no evidence to suggest her care interventions were prolonged or extensive use of the retreat and return approach. It acknowledged staff had to be flexible and able to respond when Mrs Z called out or shouted outside of planned care interventions.

163. The panel did not find evidence staff were spending prolonged periods seeking to reassure her. It found Lorazepam was infrequently given to her.

164. It recognised Mrs Z required monitoring for health risks, and this was done by carers with general oversight from nurses. There was no indication any of the monitoring required was difficult or time-sensitive.

165. The panel concluded her needs did not show the intensity associated with a Primary Health Need.

166. Paragraph 3.4 of the National Framework sets out the following questions to consider when considering this need:

Questions that may help to consider this include:

• How severe is this need?

• How often is each intervention required?

• For how long is each intervention required?

• How many carers/care workers are required at any one time to meet the needs?

• Does the care relate to needs over several domains?

167. We have reviewed the material evidence and from viewing this, we can see Mrs Z did require a great deal of care and monitoring, but most of her needs were anticipated by her carers. Mrs Z was cared for with interventions from two carers who would be required for mobility assistance and required one carer for other interventions.

168. The care Mrs Z needed was routine in its nature for her care staff, and not of a severity that was not manageable. We cannot see any referrals made to any specialist teams.

169. The evidence shows Mrs Z’s care could be delivered by carers following a care plan which had been assessed, planned and monitored by registered nurses and carers within the care home and the GP was consulted when required.

170. The carers required knowledge and skills which assisted them in caring for individuals with dementia and the care home was an appropriate placement for Mrs Z.

171. We can see input from the registered nurse on several occasions, for example, on 9 May 2017, the staff informed the practice nurse about Mrs Z’s rectal bleeding who were advised to keep an eye and was prescribed some medication.

172. On 16 May 2017, a review took place with the nurse practitioner who prescribed pain relief and the staff were required to monitor Mrs Z for increased drowsiness. The note states she would be reviewed again in two weeks.

173. As such, there is no evidence of severe departure from the care plans, or any significant changes to Mrs Z care due to an increasing level of intensity. There was no specialist outside intervention required.

174. We do not consider there to be any indications of failings in the IRP’s decision-making process about the intensity of Mrs Z’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.

Complexity

175. The National Framework says 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 interactions 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 when a physical health need results in the individual developing a mental health need’.

176. Mrs T told us her mother’s had needs in several domains with interaction between them, for example, her cognitive impairment impacted on her behaviour, psychological and emotional needs and ability to communicate reliably. She said staff were needed to anticipate, understand and interpret her needs. Mrs T says no triggers or calming strategies were identified as successful.

177. Mrs T said her mother required specialist dementia care to understand the stages of dementia and the appropriate care for her. She referred to her mobility and continence impacted on her skin integrity with the very high risk of skin breakdown and infection.

178. She says her mother’s behaviour impacted on her skin integrity with continued scratching of her vaginal area.

179. Mrs T emphasised her mother required two carers to provide all her personal care and repositioning. She also referred to the care staff and registered nurse for managing and monitoring her health needs.

180. She referred to her mother’s abusive behaviours which impacted the delivering of her care. She said this was time consuming, and required staff to re-visit a little later or an alternative member of staff to attend.

181. Mrs T explains family were frequent visitors and were called upon to help on many occasions with limited success. She said she suffered unexplained weight loss during this period despite being on a high calorific diet and sedentary.

182. She said Mrs Z’s psychological and emotional state was one of constant torment due to the distorted and twisted world she believed she lived in. She suffered with extreme paranoia, anxiety, depression and hallucinations with a distorted view of the world leading to frequent and regular bouts of fear, distress and agitation.

183. Mrs T says this occurred daily and several times a day requiring reassurance and support from staff or family members with limited success in lifting her mood.

184. Mrs T said her mother had been seen by various specialists over the years and had ‘signed her off’ as ‘not being able to help her’. The family accepted this in 2016 when she was evicted by a care home and again when she was evicted from different care home.

185. The panel considered while Mrs Z had several interactions between the domains, her cognitive impairment affected all her needs due to the impact it had on her awareness of those needs. It noted the interactions between the domains of cognition, psychological and emotional needs and behaviour and between skin, mobility and continence.

186. It found Mrs Z’s needs could be met by carers with oversight from the nurses at the care home. While her needs in the mobility domain were high, it found the interventions were not complex. She also experienced some pain, and carers were required to be mindful of this.  The panel found no evidence of any modifications to standard moving and handling procedures.

187. The IRP acknowledged her high level of need in behaviour, drug therapies and medication: symptom control. It found the interventions were not complex or difficult, including the administering of her medication.

188. It recognised she experienced pain, and she was prescribed regular pain relief. Mrs Z could inform the carers when she was in pain, and the panel could not find any complexity in her pain management regime.

189. The IRP concluded Mrs Z’s needs did not show the complexity associated with a Primary Health Need.

190. Paragraph 3.5 of the National Framework sets out the following questions to consider when considering this need:

‘Questions that may help to consider this include:

• How difficult is it to manage the need(s)?

• How problematic is it to alleviate the needs and symptoms?

• Are the needs interrelated?

• Do they impact on each other to make the needs even more difficult to address?

• How much knowledge is required to address the need(s)?

• How much skill is required to address the need(s)?

• How does the individual’s response to their condition make it more difficult to provide appropriate support?

191. From viewing the available information, it is apparent there are many interactions between several of the care domains, which did impact on Mrs Z’s day to day living. For example, due to her cognition, she needed assistance from her carers across all her needs. We can also see how this affected her care for example with her continence and skin needs.

192. While we can see there were interactions between the domains, influenced by her underlying conditions, Mrs Z’s care could be delivered by carers with input from registered nurse and the GP.

193. There was no evidence to support her care was difficult and complex to manage, nor did she require regular, intensive input from a specialist team.

194. Our adviser also comments Mrs Z’s care was not complex in nature and it did not indicate a Primary Health Need.

195. Mrs Z’s care was not complex in nature, and the care records do not indicate that a primary health need was present. The IRP gave the level of detail we would expect when assessing the complexity indicator. Its considerations were in line with the National Framework, and it’s reasoning was supported by the available records and documentation.

196. We fully appreciate Mrs T felt her mother’s needs were highly complex, and we understand how the range of underlying conditions would have complicated the challenges in meeting those needs. We have carefully reviewed the evidence and, while we found no indications of failings, we do not underestimate how difficult this experience must have been for Mrs T and her family.

Unpredictability

197. As per the National Framework, ‘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’.

198. Mrs T told us the impact of the stroke on her mother in 2014 left her with no use of her left side, severe brain damage and on-set of vascular dementia.

199. She said the needs of Mrs Z were generally well understood by the regular staff at her care home. Mrs T also stated this care home relied heavily on agency staff and had a high turnover of staff leaving.  Mrs Z’s physical and mental health were expected to deteriorate.

200. Mrs T said her mother was immobile, totally relying on others for all her movement. She said her mother was tormented by constant confusion, disorientation, distress and agitation. Mrs T also said staff had to ensure that her environment remained safe and hazard free to minimise risks.

201. Mrs T said she was unable to assess risks and hazards and had no insight into her condition and the impact it had on her activities of daily living and her health needs.

202. Mrs T also commented could not communicate reliably. She needed staff or family to anticipate her needs and to make all decisions for her.

203. Mrs T said her mother regularly expressed a wish to die or to be killed, regular reassurance was needed in a timely manner to try and prevent the low mood progressing. She said no effective strategies were found to lift her mood.

204. She said her mother could not do anything for herself. In all aspects of daily living and healthcare she was entirely dependent on others.

205. The IRP recognised Mrs Z’s condition was gradually deteriorating, which was consistent with her diagnosis of dementia. It also noted evidence of weight loss, but her BMI was considered within the healthy range.

206. The panel could not find evidence of a fluctuating, unstable, or rapidly deteriorating condition.

207. It said her needs could be planned for, and the care plans were stable. The IRP acknowledged the GP recommended a high calorie diet, and there were some changes to Mrs Z’s medication. It also noted it was not possible to predict in advance when she would engage in challenging behaviour. The panel said the risks of this were planned for by the care home.

208. It was unable to find any need for spontaneous interventions outside of the care plans to meet Mrs Z’s needs.

209. The IRP concluded her needs did not show unpredictability associated with a Primary Health Need.

210. Paragraph 3.6 of the National Framework sets out the following questions to consider when considering this need:

‘Questions that may help to consider this include:

• Is the individual or those who support him/her able to anticipate when the need(s) might arise?

• Does the level of need often change? Does the level of support often have to change at short notice?

• Is the condition unstable?

• What happens if the need isn’t addressed when it arises? How significant are the consequences?

• To what extent is professional knowledge/skill required to respond spontaneously and appropriately?

• What level of monitoring/review is required?’

211. Having considered the submissions from Mrs Z’s family and the IRP, we have not seen evidence of fluctuating changes in Mrs Z’s needs, and her care did not have to be drastically amended due to any changes in her needs.

212. While we can see there were interactions between the domains, influenced by her underlying condition, they did not fluctuate unduly daily. We can see Mrs Z’s care plans did not require amendment, and care was not required to change suddenly. Her care followed a natural format which was appropriate to her underlying conditions.

213. Our adviser states here were no evidence to support that her care was unpredictable to manage and there was no evidence to support her care was unpredictable to manage.

214. We recognise Mrs T’s concerns about her mother’s unpredictability especially relating to her communication needs, and low mood. The records show this was appropriately managed with input from the GP and registered nurses at the care home.

215. For example, Mrs Z’s care plans provide a detailed overview of the level of care she needed in all areas, as well as clear instructions for care staff to ensure her care was delivered safely.

216. The IRP’s conclusions can be supported by the evidence we have seen. Our adviser also confirms The IRP did consider Mrs T and the ICB’s supporting information, and within the case file to make its determination Mrs Z did not have a primary health need in relation to the unpredictability indicator. As such, there are no indications of failings in this part of the IRP’s consideration, and it is in line with the National Framework.

Primary Health Need test

217. In the family’s written submissions and at the IRP meeting, their concern of Mrs Z had been assessed by the ICB as having a Primary Health Need from 22 October 2014 to 21 March 2017 but not from 22 March 2017 to 24 May 2017.

218. The family said the ICB relied on the discharge from CMHT and did not understand this.

219. The family had been told by the care home manager at the time of their mother’s discharge she was being discharged because there was nothing more CMHT could do for her.  They did not see the correspondence with CMHT until after the conclusion of the local resolution process.

220. The family did not consider the correspondence as saying their mother had improved. It was more about the nursing home being able to meet her needs.

221. The family also referenced the National Framework which made it clear a Primary Health Need did not go away because it could be managed. The National Framework also emphasised that eligibility could not be based on the need for specialist staff.

222. The IRP considered the family’s concerns and discussed its interpretation of the letters from CMHT. The panel said the letters were not so much that Mrs Z’s condition had improved but rather there was nothing further that the service could meaningfully add to what the home were doing.

223. It said this did raise some questions for the IRP about whether 22 March 2017 was the appropriate date to use in distinguishing between levels of need in the domain of psychological and emotional Needs. It added the same observations applied to using that date as a cut-off point for eligibility.

224. The panel said it did not consider it would be appropriate to revise its judgement of the position during the period under review because the ICB had determined Mrs Z was eligible in the period prior to that.

225. The IRP agreed with the family as a decision on eligibility should not be based on the ability of the care provider to manage care, the need for / presence of specialist staff in care delivery or the fact that a need is well-managed in line with paragraph 66 of the National Framework.

226. It reassured the family it had not used any of these as a touchstone for determining eligibility. It also wished to draw attention to the following matters in the hope they would help the family to understand the IRP’s decision.

227. We considered whether the IRP assessed the Primary Health Needs of Mrs Z in line with the National Framework.

228. Our adviser says the IRP reviewed the family’s concerns and assessed whether the Primary Health Need Test and the principles contained in the National Framework were applied correctly by the ICB. Specifically, the IRP considered whether the well-managed needs principle as outlined in paragraph 66 of the National Framework was appropriately interpreted and followed during the eligibility assessment.

229. The IRP agreed with the family’s position decisions on eligibility should not be based on factors such as the ability of the care provider to manage care effectively, the need for, or presence of, specialist staff involved in delivering care, and whether a need is well-managed

230. We can see the IRP reassured the family none of these factors were used as the basis for its eligibility determination.

231. The IRP referenced paragraph 66 of the National Framework which states that managed needs should not influence the eligibility assessment, and this does not exclude consideration of the type of intervention required or the level of skill and knowledge necessary to provide care. This is supported by Practice Guidance 3, which explicitly highlights the relevance of such factors.

232. Additionally, the National Framework makes clear in paragraph 166 that eligibility assessments should account for how medication and routine care are provided, rather than hypothetically assessing needs as if such interventions are absent.

233. In relation to the family’s concerns about CMHT correspondence and the timeline used in the assessment, we can also see the IRP acknowledged the letters indicated the CMHT discharged Mrs Z because the service could not add meaningfully to what the nursing home was already providing, not necessarily because Mrs Z’s condition had improved.

234. The IRP noted these raised questions about the appropriateness of using 22 March 2017 as a cut-off date for distinguishing levels of need and eligibility, but it ultimately did not find enough evidence to revise its judgement.

235. Our adviser affirms the IRP appropriately applied the principles of the National Framework when assessing eligibility in Mrs Z’s case, including correct consideration of the well-managed needs principle. This advice provides reassurance that the process followed was consistent with established guidelines.

236.  While we cannot identify anything that went wrong in this aspect, we fully recognise Mrs Z’s family felt the process did not adequately reflect or prioritise her mother’s needs, and the IRP may not have fully captured the complexity of Mrs Z’s Primary Health Needs.

237. We deeply acknowledge how upsetting and distressing this must have been for the family. The evidence reviewed shows that the panel took steps to recognise Mrs Z’s needs and gave thoughtful consideration to the concerns raised by the family.

Procedural concerns 238. Our role is to look at how NHSE considered Mrs T’s concerns, and not the actions of the ICB directly. This is because we would expect the IRP to have acknowledged any errors by the ICB, considered the impact and made recommendations.

239. Mrs T informed the IRP; the only reason the retrospective assessment was completed was because she had taken offence at a comment at a local resolution meeting (LRM) about her mother not being eligible as she did not ‘stand out’ from hundreds of other people in nursing homes.

240. In response, the ICB representative apologised if that had been said.

241. The IRP stated as panel members were not present when the comment was alleged to have been made, it considered Mrs Z as a credible witness. The IRP disapproved the use of language of this kind and considered this was not in line with the National Framework.

242. In the light of the ICB representative’s apology, the IRP made no formal recommendation but included the matter in its report so the ICB was aware of it.

243. Mrs T also told the IRP the assessor had difficulty in obtaining records and had concerns about the standards of record-keeping.

244. The chair said the ICB did not have direct control over record-keeping in individual care homes but asked for the ICB representative for any comments. The ICB representative added the ICB sometimes experienced in getting records and had to ask families to help.

245. The IRP commented families did not always have legal authority to require nursing homes to provide the records to the ICB. There was nothing to prevent them from reminding the care homes of the ICB’s requests and acknowledged care homes were more responsive to the requests of family members.

246. The panel were sympathetic to the family’s concerns about the quality of record-keeping, but this was not in the control of the ICB, and it would not be appropriate for the IRP to make any recommendations.

247. In terms of the request to appeal the “not eligible” period of 22 March 2017 to 24 May 2017, Mrs T said her request to appeal the ‘not eligible’ period of 22 March 2017 to 24 May 2017 had initially been turned down as it had already been considered.

248. The IRP commented the procedural history was complex and the ICB had consulted NHSE. It agreed to proceed with an appeal. As such, no recommendations were made.

249.  The IRP also identified issues with the quality of the documentation. It found contradictory statements in a letter dated 14 May 2021 which stated Mrs Z was eligible and further in the letter it stated she was not eligible.

250. The LRM notes also gave a signature which pre-dated the date of the local resolution meeting by some 11 months.

251. The IRP representative acknowledged and apologised for the errors.

252. The IRP recommended the ICB to take steps to ensure key documents, especially outcome letters are proof-read carefully.

253. After reviewing the documents provided by NHSE, we can see from the IRP minutes Mrs T’s views were considered throughout the process. There is no evidence to suggest that any verbal contributions she made were omitted.

254. Regarding comments made by the representatives, our adviser confirmed that the panel was correct in stating they could not comment on what may have been said. Even in a court of law, such statements are considered ‘hearsay’ and cannot be treated as evidence.

255. We note the ICB representative issued an apology, and the IRP acknowledged this issue by including it in its report.

256. In response to the family’s request to appeal the ineligible period from 22 March 2017 to 24 May 2017, the ICB considered the total period of care during the retrospective appeal and sought advice from NHSE, agreeing to proceed with the appeal. As such, the IRP did not make any recommendations regarding this matter.

257. We can see that the IRP addressed the family’s concerns as part of its review of procedural issues.

258. With regard to obtaining records and the quality of documentation, the IRP acknowledged the family’s concerns and commented on this aspect. Our adviser agreed that it is the ICB’s responsibility to ensure documents are proofread before being issued; the IRP can only recommend that this should be done.

259. We are satisfied the IRP considered Mrs T’s concerns where they fell within its remit. We have found no indication of failings in this regard.

260. We appreciate how distressing this prolonged process has been for Mrs T and her family, and we are sorry to hear about the impact this has had. While our decision reflects the findings of the investigation, it does not diminish the significant effect these issues have had on Mrs T and her loved ones.

1. We have carefully considered Mrs T’s complaint about how NHS England (NHSE) review upheld NHS Sussex Integrated Care Board’s (the ICB) decision not to give her mother, Mrs Z, NHS funded continuing healthcare (CHC).

2. To reach our decision, we have reviewed the information Mrs T sent to us, as well as the information provided by NHS England (NHSE). We have seen NHSE acted in line with the National Framework when making its decision. We have also found nothing went wrong when the IRP considered the procedural concerns raised by Mrs T as we feel it has taken sufficient steps to address these concerns.

3. We understand how frustrating the CHC process can be. We acknowledge the amount of time Mrs T has dedicated to taking her complaint through the NHS appeals procedure and then bringing it to us.