21. To help us reach a decision, we have carefully considered the information the representative provided, alongside the evidence the IRP considered.
22. For reference, CHC describes care provided over an extended period of time to meet physical or mental health needs arising as a result of disability, accident or illness. If someone meets the criteria to receive CHC funding, the NHS will fund their care.
23. The purpose of the IRP is to review the procedures the CCG followed in deciding a person’s eligibility for CHC. In reaching a view about whether the CCG followed the correct process and whether it correctly applied the eligibility criteria, the IRP can recommend the CCG reconsider a case to address any faults identified in the process, or it can reach a view as to whether the individual should or should not be considered to have a primary health need.
24. Whether an individual is eligible for CHC is a discretionary decision. It is our role to decide whether the IRP made its decisions in line with the National Framework. We consider whether it took account of all the relevant information provided to it when reaching its decision.
25. We cannot question discretionary decisions made without maladministration (fault), and we can only uphold a complaint about an eligibility decision if there is some specific fault in the way the IRP reached its decision. Such decisions are based on clinical judgements and opinions. The fact someone else has a different opinion does not mean there must have been a fault in the decision-making process.
26. To reach a decision on this complaint, we consider four key areas. We outline them below.
Did the IRP establish all the appropriate and relevant clinical facts?
27. To start, we reviewed all the information NHS England provided, including the IRP report, the IRP file and the relevant clinical documents. We have also reviewed all the information the representative provided.
28. The IRP specifically considered the following evidence:
• IRP request form (28 February 2018) and the representative’s submission (16 April 2019) to the IRP • minutes of the LRM held on 16 June 2017 • CCG ratification (28 June 2017) • DST (6 September 2016) • NHS CHC checklist (21 June 2013) • needs portrayal document (6 June 2016) • social services records • GP summary, correspondence and other medical records from 1992 to 2012 • hospital records from 13 December 2010 to 22 December 2010 • nursing home records • evidence given during the IRP meeting.
29. From viewing the IRP notes, we can see the attendees discussed Mr U’s background in detail towards the start of the meeting. This included Mr U’s health history from when he moved to a nursing home in December 2010.
30. A local authority care home cared for him and GPs were also overseeing.
31. Dr U explained what care was needed on a typical day and what Mr U’s carers did to maintain his health and wellbeing.
32. The IRP report documents a discussion of the reasons for challenging the CCG’s eligibility decision and Dr U’s points relating to his experience with the CHC process.
33. Paragraph 5.3 of the National Framework says, ‘The records that may be required to reach an informed conclusion on eligibility could include those from GPs, hospitals, community health services, local authority social care, care homes and domiciliary care/support services’.
34. The IRP considered the social care records, GP records and relevant clinical assessment records. These included daily care records, clinical reviews and medication records.
35. The IRP discussed each of the domains and key indicators that make up the eligibility criteria. The discussions centred around the CCG’s documentation, Dr U’s and the representative’s written and oral submissions, and the available evidence provided to the IRP. We explain in more detail the domains and four key characteristics later in this report.
36. We can see numerous examples of the chair considering Dr U’s oral submissions to the discussions. For example, ‘In answer to a question from the IRP, [Dr U] said he [had] never seen his father struggle with articulating words even after his stroke in May 2012’ and ‘[Dr U] told the IRP he had seen his father tense or uptight but never tearful’.
37. We cannot see any omissions in the documents and submissions the IRP considered. It considered all the available and appropriate evidence as required by the National Framework. We have seen no signs of failings in this part of the IRP’s consideration.
Before it made its decision, did the IRP have a clinically led discussion about the impact and interaction of the clinical facts?
38. The National Framework states that:
‘[NHS England] is responsible for convening an independent review panel consisting of:
• an independent chair (appointed by [NHS England]) • a CCG representative • a local authority representative.
39. Dr U complains he is unhappy with the way the IRP panel was constituted. He says the panel consisted of an independent chair and two qualified social workers, one of whom was put forward as the NHS/CCG independent representative.
40. Dr U’s representative explained to us in an email dated 21 October 2022 that the panel did not include a nurse or other suitably qualified clinician. Dr U says the CCG/NHS representative described themselves as a commissioning manager for the CCG, but the IRP shows they are in fact a social worker by profession.
41. Dr U and his representative say the improper constitution of the panel is a breach of process and detrimental to the family’s right to a full independent review by a properly constituted panel.
42. We have looked at Dr U’s concerns, and we can see the panel consisted of:
• an independent chair (appointed by NHS England) • a CCG representative • a local authority representative.
43. We contacted NHS England on 7 October 2022 to clarify this point and were told ‘I can confirm there were two Social Workers on the panel. There was also a Clinical Advisor on that panel due to the fact that the CCG representative did not have a clinical background, however the CCG representative was still there to represent health’.
44. We refer to the standing rules reiterated in the email response from NHS England. Those say ‘the appointment of representatives from ICBs [integrated care boards] will be on the basis of the nomination of those organisations. They should take account of professional and other skills that are relevant to the work of the IRP’. As such, the standing rules do not require the CCG representative at the IRP to be a clinician by background.
45. While the CCG representative was a social worker, we can see they were acting in the capacity of a CCG representative. We understand Dr U is unhappy that two members on the panel had a social care background and he feels disadvantaged.
46. Paragraph 18 of Annexe D of the National Framework also says, ‘The chair of the relevant IRP should consider in advance of the hearing whether, bearing in mind the nature of the case, the evidence supplied, and the role of the clinical adviser set out in paragraph 19 below, there is a need for the panel to access independent clinical advice’.
47. As the IRP members were in line with the National Framework requirements, we consider NHS England had an appropriately constituted panel. We have also seen a clinical adviser was present at the IRP, allowing clinical input when required. This is also in line with the National Framework. We have not seen any signs of failings here.
48. From viewing the IRP report and notes, we have seen the IRP worked through and discussed each of the care domains in turn with Dr U and his representative. For reference, there are twelve care domains in the DST stage of the CHC assessment. An assessment is made against each domain and awarded a level of need depending upon the issues the person presents with.
49. Dr U specifically disputed the following domains:
• nutrition • mobility • psychological and emotional needs • behaviour • drug therapies and medication symptom control.
50. The IRP had in-depth discussions with Dr U around each disputed domain. The IRP considered his conclusions regarding the weightings for the domains he disputed, presented both orally and in the written documents he provided. The IRP chair also questioned Dr U to gain more information on his thoughts for each domain.
51. It discussed and noted the clinical reasons why the CCG and Dr U had chosen the specific weightings for each domain.
52. The IRP referred to the care records provided. For example, ‘His care plan dated 11 July 2011 stated he was able to express his needs and concerns verbally’. It also referred to the nursing notes. For example, ‘The tissue viability nurse (TVN) recommended the application of Sudocrem rather than any dressings, and by 8 May 2012 the sacral wound was healing well’.
53. In the IRP’s considerations, which are shown in the IRP report for each care domain, it refers to Dr U’s view and the CCG’s view. It then goes on to explain the IRP’s weighting and what evidence it considered in reaching its conclusion.
54. We have seen no evidence to suggest any facts were overlooked, marginalised or not adequately considered during the IRP process. For this reason, we are satisfied the panel had a clinically led discussion about Mr U’s needs in terms of the effect and interaction of the relevant clinical facts.
Did the IRP’s final decision adequately consider and explain the conclusions of the clinically led discussion?
55. Paragraph 199 of the National Framework says that when considering eligibility, NHS England should provide ‘clear and evidenced written conclusions on the process followed by the NHS body and on the individual’s eligibility for NHS CHC, together with appropriate recommendations on actions to be taken. This should include the appropriate rationale’.
56. For someone to be found eligible for CHC funding, it must be established they have a ‘primary health need’, which means their primary need(s) must be for healthcare, as opposed to social care.
57. To determine whether someone has a primary health need, the nature, intensity, complexity and unpredictability of a person’s need must be considered. These are known as the four key indicators. The totality of the individual’s needs is considered when determining whether they are eligible for CHC funding.
58. The four key indicators may individually or in combination demonstrate a primary health need. This is because of the quantity and/or quality of the care needed to meet a person’s needs.
59. We can see the IRP’s decision presents and summarises the conclusions of the clinically led discussions in depth.
60. From viewing the IRP report and the IRP notes, we can see the IRP considered in detail each of the key indicators and how they affected one another. For example, under the complexity indicator, it says ‘Mr U’s impaired cognition had an impact on his needs in a number of domains, most notably affecting his ability to communicate his needs leading to frustration and his behaviour being sometimes challenging’.
61. It shows the IRP considered the relevant clinical information, the CCG’s view, Dr U’s view and the available evidence.
62. The IRP concluded the care needed in Mr U’s day-to-day life was no more than incidental or ancillary to the provision of care which the local authority was able to provide. Trained carers familiar with the needs of older people delivered the care he needed. When required, primary health services, such as Mr U’s GP and community nursing services, also provided care.
63. Having viewed the care records, we see there are extensive examples of what level of care was required, and the care staff were able to provide this care. For example, on 1 July 2011, the care home’s individual person-centred care plan says Mr U ‘prefers to have all meals in dining room. Able to use standard cutlery, made need assistance to cut some food’. Another entry in the care record dated on 26 December 2011 says Mr U ‘appears to be himself again. Eating well and drinking well, no difficulty swallowing’.
64. From viewing the information, the IRP did not miss evidence to show that Mr U needed specialist assistance.
65. Having viewed the IRP notes, we can see the IRP, the CCG and Dr U discussed Mr U’s clinical conditions and his day-to-day care. Those discussions reflected entries in the records available to the IRP. For example, due to his immobility, Mr U needed two carers and a hoist to transfer and assist with repositioning. The care records correlated with what was discussed.
66. We consider the IRP’s rationale to be consistent with Mr U’s records. We have seen the IRP explained its rationale and considered this alongside the four key indicators. As such, we have seen no signs of failings.
Did the IRP apply the appropriate eligibility tests?
67. Paragraph 124 of the National Framework sets out the following:
‘Establishing whether an individual has a primary health need requires a clear, reasoned decision, based on evidence of needs from a comprehensive range of assessments relating to the individual. A good-quality multidisciplinary assessment of needs that looks at all of the individual’s needs “in the round” – including the ways in which they interact with one another – is crucial both to addressing these needs and to determining eligibility for NHS Continuing Healthcare. The individual and (where appropriate) their representative should be enabled to play a central role in the assessment process’.
68. From viewing the IRP notes and submissions, we can see Dr U disagrees with the rationale for the four key indicators. As such, 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
69. According to the National Framework, ‘Nature describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (“quality”) of interventions required to manage them’.
70. Dr U explained to the panel that, by May 2012, Mr U needed full assistance with food and drink, as his ability to swallow had deteriorated in January 2012.
71. Dr U says his father was incontinent and prone to both urinary tract infections and constipation. He also had episodes of soreness and skin breaks, and a sacral sore in April 2012. He needed staff to monitor skin integrity and to liaise with the TVN as required.
72. In his appeal submission, Dr U referred to his father’s diagnosis of MND and said that due to this condition, Mr U was unable to communicate his needs, and staff had to anticipate his needs and observe for non-verbal cues.
73. Dr U also says Mr U’s mobility was severely affected, and he had falls, becoming increasingly immobile. He was unable to cooperate with moving and handling as he was resistive and frightened, which may have been due to uncontrolled pain. It is also noted Mr U had osteoarthritis in his left hip and sciatica in his left leg.
74. This, together with shortening tendons, resulted in significant that which was not properly controlled.
75. Mr U also required staff to administer and monitor his medications for their effectiveness and to liaise with the GP and healthcare professionals in relation to symptom control and management of his condition.
76. In the report, the IRP acknowledges Mr U’s diagnoses. It explains the day-to-day assistance needed to keep him safe and well. It detailed how Mr U’s comorbidities and care needs affected him, and it provided and included an explanation of Mr U’s needs for each domain.
77. It explained what outside support was needed to care for Mr U. For example, the TVN monitored his skin integrity, and GP input was needed to refer him to specialists such as a consultant psychologist regarding his anxiety, agitation and cognition.
78. The IRP concluded the nature of Mr U’s needs did not demonstrate a primary health need. It said Mr U’s needs were not above what a local authority would be expected to provide, with input from appropriate NHS services.
79. Paragraph 3.3 of the National Framework sets out the following questions to address when considering this need:
• 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?
80. Both Dr U and the IRP say Mr U had a vast amount of care needs that he needed assistance with. On review, we can see he had various care needs but we have seen no evidence of Mr U needing any significant interventions from medical professionals.
81. For example, the consultant psychologist provided input in December 2010 to assess Mr U’s mental and physical condition. The consultant physician also provided input several times to assess the symptoms relating to MND. While Mr U had many needs, they were managed effectively and in a timely manner within the limits of what the local authority could provide.
82. There is no evidence to suggest caring for Mr U was problematic, as professionals who knew him and how to address his needs provided this care. Numerous reviews and assessments were carried out to ensure Mr U’s needs were adequately managed and had not drastically changed.
83. The local authority managed Mr U’s needs effectively. We have seen no signs of failings in the IRP chair’s reasoning that Mr U did not have an overall high level of need in this key indicator.
Intensity
84. In line with the National Framework, we would expect the IRP’s consideration of the intensity indicator to ‘relate 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”)’.
85. Dr U said his father’s deteriorating degenerative condition meant there was an increased intensity regarding the management of his care needs and pain. He pointed to his father’s MND, which required skilled staff to monitor his condition and recognise deterioration associated with the disease.
86. Dr U pointed to his father’s weight loss in 2011 and said this continued during 2012. He also argued his nutritional status was at risk before 2012 because of Mr U’s unintended weight loss and his variable swallowing difficulties.
87. The IRP acknowledged Mr U was dependent on carers to maintain his health, dignity and wellbeing. There was no evidence his care needs were so severe they required an unusual quality or quantity of interventions.
88. It acknowledged Mr U’s distress and occasional aggression would have meant some care interventions took longer, but there was nothing to suggest staff had to allow extra time or that care could not be delivered.
89. The IRP said one or two care staff could meet Mr U’s care needs.
90. The IRP concluded the quality and/or quantity or intensity of Mr U’s care did not indicate a primary health need and were not above the limit of what a local authority could provide.
91. Paragraph 3.4 of the National Framework sets out the following questions to address when considering this need:
• 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?
92. We have reviewed Dr U’s and the IRP’s submissions, and the material evidence used. We can see Mr U required a great deal of care and monitoring, but his carers anticipated most of his needs. Mr U was cared for on a one-on-one basis, apart from when moving and handling, as two carers were required for this.
93. The care needed was routine in nature for his care staff and not of an unmanageable severity. For example, we can Mr U’s care home’s care plan recorded ‘he has reduced mobility, left hip X-ray (May 2011) shows severe degenerative changes, prescribed regular analgesia’. It also says Mr U sometimes ‘required hoist and two carers, needs to be assessed daily’.
94. There is no evidence of a severe departure from the care plans, or any significant changes to Mr U’s care due to an increasing level of intensity. No specialist outside intervention was required.
95. We do not consider there to be any signs of failings in the IRP’s decision-making process about the intensity of Mr U’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
Complexity
96. When the IRP considers the complexity indicator, in line with the National Framework, we would expect it to ‘look at how the needs present and interact with one or more other conditions to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care’.
97. Dr U’s written appeal said his father’s diagnosis of MND and dementia affected all domains of his care. He said his cognition interacted with his psychological needs and affected his behaviour and communication.
98. Dr U said his father’s mobility was complex due to MND symptoms, which increased his levels of pain, and this was difficult to manage as it became an obstacle to care delivery. He said even though staff made attempts to administer medication prior to moving and handling and care interventions, Mr U had pain and resisted care interventions.
99. He says his father’s nutritional status was complex due to his ongoing risk of weight loss throughout the review period. Dr U says Mr U’s swallowing difficulties increased. It was agreed in January 2012 that, due to the pain he experienced during the process, Mr U would no longer be weighed.
100. The IRP acknowledged there were a range of interactions between the care domains. It said Mr U’s cognitive impairment affected his communication and led to his behaviour sometimes being challenging.
101. Carers had to pay attention when moving and handling due to him experiencing muscle wastage and fasciculations (a fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibres). The IRP said shortening ligaments, sciatica and osteoarthritis in Mr U’s left hip caused him pain, especially when moving him.
102. The IRP accepted his medication needs affected his behaviour. The IRP says that Mr U had some swallowing difficulties from late 2011, and this influenced his nutrition, with a potential effect on his skin integrity.
103. The panel said it was not difficult to manage Mr U’s needs, but it required an understanding, person-centred approach. Mr U’s care required an awareness of the needs of people with cognitive impairment and familiarity with him, and he was able to respond better to some care staff than others. It also said the care staff were familiar with his care interventions, and he was compliant with his care most of the time.
104. It did not see evidence there was a requirement to use specialist services or interventions.
105. As such, it concluded the degree of interactions between the domains did not introduce a significant level of complexity into Mr U’s care and did not require additional specialist resources or an increase in staff skills to monitor and manage his care.
106. It concluded Mr U’s care did not indicate a primary health need and was not above the limit of what the local authority could provide.
107. Paragraph 3.5 of the National Framework sets out the following questions to address when considering this need:
• 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?
108. It is apparent to us from viewing the available information that there are many interactions between several of the care domains that did affect Mr U’s day-to-day living. For example, due to his cognition, he needed assistance from two carers with his mobility and transfers. Another example of the interactions can be seen in his care records when he refused to take his medications on occasions from 25 March 2011. Prior to this, there is no evidence to suggest his non-compliance with taking his medication.
109. From viewing the available records, we have seen there was no need for any specialist input or knowledge to care for Mr U. His carers and the staff involved in his wellbeing did not find it difficult to care for Mr U, as they could reach out to his GP for further input as and when required. The services and help he required were not above what the local authority could provide and were not specialist in their nature.
110. There is no evidence staff found it difficult or problematic to care for Mr U because of the interactions between his needs. There is no evidence to suggest staff had to frequently change their approach to care for him due to the interaction of his needs.
111. As such, 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 the available records and documentation support its reasoning.
Unpredictability
112. According to 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’.
113. In his written statement, Dr U said the rate of his father’s MND deterioration was unpredictable but could be expected to be rapid. Dr U said Mr U had a significant deterioration, with several fluctuations in his condition, during the review period in question.
114. Dr U also said Mr U’s condition deteriorated to such an extent in March 2012 that the GP considered him to be at his end of life and prescribed anticipatory medications. He said his father remained on end-of-life status, and the GP, consultants and nursing staff focused on symptom management.
115. Lastly, in his appeal, Dr U mentioned it was agreed his father should not receive artificial feeding, and it was acknowledged that he was likely to develop worsening swallowing difficulties, which would lead to aspiration pneumonia.
116. The IRP said the evidence showed no significant fluctuations in Mr U’s care need or a high level of instability. There was no information to suggest a need for external services to address fluctuating needs.
117. The IRP noted Mr U’s needs increased over the period, but the IRP considered this increase did not represent a high level of unpredictability. It considered a slow deterioration would be expected of someone with Mr U’s condition and that his care needs could be anticipated.
118. It considered Mr U required regular monitoring and timely care from his carers, who were familiar with him and responded accordingly.
119. The IRP concluded there was not a high level of unpredictability in Mr U’s care needs, and most of them appeared to be planned for or anticipated. The carers were able to manage Mr U’s care, with planned interventions from a registered nurse and GP to maximise his physical and mental wellbeing.
120. Paragraph 3.6 of the National Framework sets out the following questions to address when considering this need:
• Is the individual or those who support them 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 is not 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?’
121. Having considered Dr U’s and the IRP’s submissions, we have seen no evidence of any sudden changes in Mr U’s needs or that his care had to be drastically amended due to any changes in his needs.
122. For example, records show the consultant physician saw Mr U on 13 January 2012, and they discussed the option of an artificial feeding tube ‘if’ his ability to swallow declined, but he and his family declined this option.
123. Another of the GP’s records, from 18 January 2012, shows Mr U’s swallowing had deteriorated and he was losing weight on a thickened diet. By 29 March 2012, the GP had prescribed him ‘thick and easy’.
124. From viewing the records, we can see Mr U’s needs varied, for example in his nutritional element, but we can see the staff who cared for Mr U, his GP and the consultant physician were aware of his needs, and they were able to plan how to manage them. There is no information to suggest his needs fluctuated frequently.
125. No specialist knowledge or interventions were needed to care for or meet his needs. He remained stable throughout the review period, and his needs were adequately addressed.
126. As both Dr U and the IRP have acknowledged, Mr U’s physical and mental health condition deteriorated due to his suspected MND and dementia. The staff anticipated and monitored this, and they were able to act accordingly and in a timely fashion when Mr U experienced any changes to his nutrition, mobility, behaviour or medications.
127. The IRP’s conclusions are supported by the evidence we have seen. There are no signs of failings in this part of the IRP’s consideration, and it is in line with the National Framework.
128. Given what we have considered above, we do not consider there to be any signs of failings in the IRP’s decision-making process.
129. We understand the distress Dr U has experienced at having to pursue his concerns over a prolonged period, and we are sorry to hear of his concerns. Our decision does not take away from the effect these issues have had on Dr U and his family.