13. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
14. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide whether NHS England’s IRP acted in line with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (July 2022) when it considered whether Mr R was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHS England should follow when considering if someone is eligible for CHC.
15. 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.
16. 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.
Procedural issues
17. Mr A complained to NHS England there is no independence in this process. He told the IRP his father’s condition did not improve and therefore funding should not have been withdrawn. He said senior managers in this process appeared more focused on proving the assessments were carried out correctly, rather than recognising the bigger picture that his father was seriously ill with a terminal disease. He said to continue to take the family through these long processes caused considerable distress.
18. We understand this was very difficult for Mr A and his family, and we were sorry to hear about his concerns. We understand his view that his father was seriously unwell and died a few months later, this does not automatically indicate funding is required. Eligibility for funding is based on the individual’s needs and how they present, and our role is to consider whether the IRP adequately considered this.
19. We recognise Mr A is unhappy with the way the ICB considered this matter, and he is of the view the procedural issues raised had an impact on the overall eligibility decision. But it is important to note 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.
20. Moreover, our remit solely concerns the review of IRP’s decision-making process and whether they followed the National Framework in coming to their decision. We do not review the ICB’s original decision, nor can it 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.
21. The National Framework says the IRP should consider concerns about the process a ICB followed when it made its decision, and the panel can make recommendations to the ICB.
22. The IRP has considered the procedural issues which were raised by Mr A. The IRP has referenced his view the process was deliberately protracted and frustrating. The IRP considered the concerns Mr A raised. The IRP confirms the ICB process did not appear to demonstrate it fully explained the Fast Track review process and the need for a DST. The IRP noted the issues in regard to individuals present at the assessment and the lack of information the ICB obtained.
23. The IRP has recognised these concerns and noted two main procedural issues: • The ICB did not obtain the full care home records, and the IRP would expect the ICB to have gathered copies of all care plans and reviews from the care home.
• The social worker was not present at the DST, and a copy of the DST was sent to the local authority. The supporting evidence for the DST was not provided to the local authority.
24. The IRP considered these concerns and made recommendations to ensure the process is improved in future. The IRP stated the ICB should:
• Ensure all documentary evidence is gathered • Review the local process relating to the MDT. It was the IRP’s view that the MDST for the DST was not compliant with the National Framework.
25. The IRP also recommended the ICB reviews the information given to an individual and their representatives when a review of Fast Track is being completed, and to ensure sufficient information is given when a full DST is indicated. This information should clearly highlight the possibility that the person may be deemed to no longer have a primary health need.
26. This is what we would expect to see from the IRP with regards to procedural issues. It recognised the concerns raised and addressed these at the IRP. It considered the concerns raised and addressed these appropriately. We are satisfied the process issues would not have made a difference to the eligibility decision, given this ultimately was reviewed at IRP. It would not have changed its overall decision that Mr R was not eligible for CHC. This is because the IRP considered the evidence presented in respect of the care domains and the nature, intensity, complexity and unpredictability of those needs. This is how it weighs up all the evidence to determine whether the person has a primary health need. Therefore, we see no indication of failing in how the IRP addressed the procedural issues.
Did the IRP get all the relevant evidence?
27. Paragraph 219 of the National Framework says the following:
‘the key elements involved in considering requests for independent reviews of NHS Continuing Healthcare eligibility include:
• scrutiny of all available and appropriate evidence as described in the Local Resolution section.’
28. We have reviewed the information provided to us in NHS England’s case file and we can see the IRP had access to the following:
• Application for Independent Review dated 19 December 2024, authority to act documentation • ICB contact and case details • ICB case summary • Timeline of Events • Document headed - Formal Appeal: Mr R DOB: 13 December • 1946 NHS: 418-327-8805, undated and email correspondence with Office of Charlie Maynard MP • ICB final decision letter dated 12 November 2024 • Minutes of the Oxfordshire Continuing Care Local Review Panel held via Microsoft Teams on 03 October 2024 • ICB decision letter dated 16 January 2024 • Decision Support Tool (DST) signed 21 December 2023 and 08 January 2024, ratified 11 January 2024 • Continuing Healthcare Fast Track Triage document dated 20 November 2023 • Fast Track Pathway Tool dated 06 July 2023 • ICB correspondence, including consent and authority to act documentation and written submissions relating to the local process • Care home records including documentation relating to: o Airway and Breathing Problems o Assessed needs care plan o Discussions with Significant Others o Monthly review o Daily Review records dated 04 November 2023 to 15 February 2024 o Fluid Balance Chart dated 14-15 February 2024 o Swallowing Diary dated 23, 27 and 29 January 2024 o Professional visit record dated 10 January 2024 to 7 February 2024 o Medication Administration Chart 14 November 2023 to 8 January 2024 • GP records, including GP letter dated 7 February 2024, referral to palliative care dated 22 November 2023, Palliative care email dated 20 December • 2023 and Respiratory Medicine Clinical Letter dated 17 November 2023 • Adult Speech & Language Therapy letter dated 23 October 2023- rejection of referral • Evidence given during the IRP meeting
29. The ICB identified the following care home records were not provided: • Care plans and review- the only care plan documentation within the casefile related to airway and breathing problems.
• Risk Assessments- there was no documentation relating to risk assessments, for instance moving and handling, skin care.
30. The IRP considered whether it had enough evidence to complete an IRP. It concluded that, with the applicant’s verbal evidence, there was sufficient information.
31. We also have a copy of the IRP report. The report documents the submissions Mr A and his sister gave in person.
32. It is clear the IRP had access to all the information the ICB used to make its decision. Mr A and his sister were present at the IRP meeting. The IRP gave Mr A and his sister an opportunity to provide verbal evidence during the meeting.
33. We can see the IRP considered all the evidence, including the applicants’ reasons for requesting an IRP and their oral evidence.
34. Whilst some information was not available, the IRP had access to sufficient information clearly detailing Mr R’s needs.
35. We think the IRP acted in line with the National Framework here.
Before it made its decision, did the IRP consider all the relevant evidence?
36. We have looked at the information in the IRP report and considered how the panel discussed all the available evidence when it was weighing up the disputed domains. We can see the IRP discussed the family’s verbal and written evidence. This is detailed in section 7 of the IRP report which outlines the family’s views on each of the domain weightings. We know some information was not available for the IRP, which is discussed in the procedural issues. The IRP considered it had sufficient information to reach a decision.
37. We can see the IRP also considered the information in the care records and GP records. It referred to its consideration of the information available. We can see the IRP took into account Mr A and his sister’s views throughout its review. We can see the IRP had the National Framework in mind when it discussed its weighting of each domain and key characteristics.
Did the IRP clearly explain how it had reached its decisions?
38. Mr A disagrees with how the IRP considered the eight of the domains and the four key characteristics. We will consider the IRPs review of each domain below.
Breathing
39. Mr A argued his father had severe needs in this domain. The DST descriptor for severe needs in this domain states:
‘Difficulty in breathing, even through a tracheotomy, which requires suction to maintain airway. OR Demonstrates severe breathing difficulties at rest, in spite of maximum medical therapy OR A condition that requires management by a non-invasive device to both stimulate and maintain breathing (bi-level positive airway pressure, or non-invasive ventilation).’
40. The IRP concluded high needs in this domain. High needs is defined in the DST as:
‘Is able to breathe independently through a tracheotomy that they can manage themselves, or with the support of carers or care workers. OR Breathlessness due to a condition which is not responding to treatment and limits all daily living activities.’
41. The IRP considered the applicants’ views in relation to this domain. The applicants told the Panel that he had difficulty speaking due to his breathing, and simple tasks such as reaching for a cup of tea would impact his breathing. The applicants confirmed he needed to sleep in an upright position to support his breathing, and he was unable to walk, feeding himself took a long time, and he could not put on a shirt without assistance.
42. The IRP considered the documented evidence and recognised he was described as breathless at rest in the DST. The GP referred to his breathlessness and said it was getting worse and affecting his speaking. He was reviewed by a respiratory consultant on 15 November 2023, and his breathlessness was described as stable.
43. The records reflect he was breathless most of the time, regardless of whether he was at rest or exertion. He was prescribed multiple medications to help him with his breathing. He had a chest infection in November 2023 and continued coughing. The IRP concluded Mr R’s breathlessness limited all of his daily activities. The Panel concluded that whilst his breathlessness was described as stable, this did not indicate he was responding to treatment.
44. The IRP carefully considered the domain descriptors. The applicants described their father’s needs as Severe in this domain. As Mr R did not have a tracheotomy, a non-invasive device, or maximum medical therapy for his breathing, his needs could not be described as severe.
45. We have reviewed Mr R’s records in relation to this domain. There are frequent references to his breathing, for example:
30 January 2024- ‘had personal care, he said he can’t breathe.’
9 November 2024- ‘was complaining of breathlessness’
46. Furthermore, the GP records from 15 November 2023 state Mr R’s ‘main issue is breathlessness, can’t really move without getting breathless, can only go one step then has to stop.’
47. We recognise Mr R had significant needs in this domain and he struggled a lot with breathlessness when moving. The records support the IRPs view that he had high needs in this domain. He was settled at rest, and even when he struggled with breathlessness, he did not require a tracheotomy or other non-invasive device.
48. It appears the IRP considered this domain in line with the National Framework and the DST descriptors. We can see no indications of failing.
Nutrition
49. Mr A said his father had moderate/high needs in this domain. Moderate needs in this domain is defined as:
‘Needs feeding to ensure adequate intake of food and takes a long time (half an hour or more), including liquidised feed. OR Unable to take any food and drink by mouth, but all nutritional requirements are being adequately maintained by artificial means, for example via a non-problematic PEG.’
50. High needs in this domain is defined as:
‘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.’
51. The IRP concluded Mr R had Low needs in this domain. Low needs is defined as:
‘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.’
52. The ICB decided, at the time of the Local Review Panel, Mr R had no needs in this domain. The ICB representative told the IRP that Mr R’s weight was stable and increasing, and the daily records showed he was eating and drinking. There was a choking episode in October 2023 and a SALT (Speech and Language Therapy) referral was made, but the SALT team did not accept the referral. There were no further reports of choking on food or fluids, and the diet was a level seven food and clear and normal fluids. There were no issues in regard to his nutrition, and he could take adequate food and drink by mouth.
53. The applicants explained they thought he had likely gained weight due to his heart condition, as he did not move and he enjoyed chocolate. He would often stop when eating as the oxygen dried his mouth and the episode of choking frightened him. The applicants told the IRP their father ate what he needed to and was very worried about everything, and it was an effort to eat.
54. The IRP noted that Mr R’s Malnutrition Universal Screening Tool (MUST) score was zero. His BMI went from 22 to 23.9 from August to November 2023.
55. The IRP considered that Mr R was referred to SALT services, but this was declined, as the episode of choking was identified as an isolated incident with no other concerns regarding his eating and drinking. He was not evidenced to be at nutritional risk during this period and his BMI was in a healthy range.
56. In order to consider this point we have reviewed the records which were made available to the IRP. The daily care records do not note any specific issues with eating and drinking. A swallowing diary was completed in January 2024, which set out he had no trouble swallowing or risk of choking, and ‘no concerns’ is documented. Mr R did not have a PEG or experience significant weight loss or gain as set out in the High needs descriptor for this domain. There is no evidence which the IRP has overlooked or dismissed.
57. We can see the records reflect the IRPs conclusion in this domain. We can see no indications of failing in the IRPs consideration of this matter.
Mobility
58. Mr A said his father had severe needs in this domain. Severe needs in this domain is defined as:
‘Completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.’
59. The IRP concluded Mr R had moderate needs in this domain. Moderate needs is defined as:
‘Not able to consistently weight bear. OR Completely unable to weight bear but is able to assist or cooperate with transfers and/or repositioning. OR In one position (bed or chair) for the majority of time but is able to cooperate and assist carers or care workers. OR At moderate risk of falls (as evidenced in a falls history or risk assessment).’
60. The ICB representative told the IRP that Mr R was able to mobilise with one carer, and he was able to move himself in bed to some extent. He had two recorded falls, in July and August 2023.
61. The applicants told the IRP Mr R was completely immobile, and he needed support for movement and transfers, and this is why they felt his needs were severe in this domain. They felt he was at risk of injury if he fell, and if he tried to get up he was at risk of a fall, and his muscles were weakened by sitting all day.
62. The IRP noted whilst he was at risk of falls, there were no recorded falls during this period under review. The daily records of care noted he was able to weight bear, but he was only able to take one or two steps with mobility aids and care worker support. He would use a wheelchair for longer distances, and it is noted he could become anxious when being assisted to move.
63. The IRP found evidence to support that he required careful positioning due to the risk of physical harm related to his breathing. He needed to be positioned carefully as he became more breathless if lay on his back, and so he was sat upright all of the time. The IRP stated the records show he spent most of his time in one position, either in his chair or sat upright in bed. The risks related to his mobility fell under the moderate descriptor for this domain.
64. In order to consider this point, we have reviewed the information made available to the IRP. We can see Mr R was supported and assisted with moving, and he used mobility aids. For example, on 14 December 2023 the records state ‘assisted to commode from armchair using Zimmer frame.’
65. The evidence supports Mr R was often settled and comfortable. The records on 7 December 2023 state ‘settled in chair’ and this is repeated often throughout the records.
66. Mr R did not require a hoist and he was able to mobilise with assistance from care home staff.
67. We recognise Mr A holds a different view to the IRP. We can see the records reflect the IRPs conclusion in this domain. We can see no indications of failing in the IRPs consideration of this matter.
Communication
68. The applicants described their father as having low needs in this domain.
Low needs is defined as: ‘Needs assistance to communicate their needs. Special effort may be needed to ensure accurate interpretation of needs or additional support may be needed either visually, through touch or with hearing.’
69. The IRP concluded Mr R had no needs in this domain.
No needs is defined as: ‘Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.’
70. The ICB representative told the IRP that Mr R would become breathless with fatigue when communicating, but he could communicate his needs. The applicants said he had old age-related short-term memory loss. If he had an infection he was confused, but generally he understood what was happening.
71. The IRP noted the records reflected Mr R was able to communicate his needs. The records show the GP spoke with him on several occasions regarding his health, and the referral to palliative care noted he had no communication issues. The respiratory consultant noted they had spoken with Mr R on the phone. At the time of the DST he was able to communicate his needs, and this is supported by the care home records and the fast-track review which stated ‘Mr R is able to communicate his needs effectively.’
72. In order to consider this point, we have reviewed the information made available to the IRP. We can see Mr R regularly spoke with the care home staff. For example, the records on 5 February 2024 state ‘had a chat with [Mr R], he says he can be anxious at times.’
73. The records also reflect he was able to communicate his concerns, for example on 7 January 2024 the records state ‘complains of breathlessness.’
74. We can see Mr R was able to communicate his needs and the records reflect the IRPs conclusion in this domain. We can see no indications of failing in the IRPs consideration of this matter.
Cognition
75. Mr A argued his father had moderate needs in this domain.
Moderate needs is defined 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.’
76. The IRP concluded Mr R had low needs in this domain.
Low needs is defined as:
‘Cognitive impairment which requires some supervision, prompting or assistance with more complex activities of daily living, such as finance and medication, but awareness of basic risks that affect their safety is evident. OR Occasional difficulty with memory and decisions/choices requiring support, prompting or assistance. However, the individual has insight into their impairment.’
77. The ICB had said Mr R had no needs in this domain. This was overruled by the IRP decision.
78. The ICB representative said there was no diagnosis of a cognitive impairment for Mr R, and he had taken part in the DST assessment. The ICB representative said there was one reference to him being confused within the care home records, and care home staff were able to reassure him.
79. The applicants said their father could get confused and had short-term memory issues. He had a routine each day and he was prescribed medication to help him sleep, sometimes too much. Mr A managed his father’s finances.
80. The IRP found Mr R was evidenced to have capacity to make decisions and retain cognitive abilities. He was able to participate in the DST meeting, and gave consent for this to happen. He was able to use a call bell, recognise his need for nutrition and fluids, able to complete aspects of his oral care, alert staff when he needed support with continence care, and able to read the newspaper and follow programs on television.
81. The IRP noted he was not diagnosed with a cognitive impairment nor have any marked memory issues. The IRP recognised he could be confused occasionally, and noted on the morning of 20 December 2023 he was very confused and using the call bell frequently. The IRP agreed Mr R relied on his close family members to support him with more complex decisions. The IRP concluded he had occasional difficulty with his memory and decision making. He needed occasional prompting and assistance, and retained some level of insight into his situation.
82. In order to consider this point, we have reviewed the information made available to the IRP. Other than the instance on 20 December 2023, we have not identified any instances of Mr R being confused. Within the GP records, there is no indication that Mr R had any cognitive concerns. On 18 July 2023, some confusion was noted when he first moved into the care home.
83. On 24 July 2023, the GP records state Mr R declined mental health input, stating that he is coping okay without the support, and he is feeling happier and well-supported in the care home.
84. The records accurately reflect the IRPs conclusions in this domain, and we can see the IRP considered this domain in line with the National Framework and DST descriptors. We can see no indication of failings in relation to this point.
Behaviour
85. Mr A said his father had severe needs in this domain. Severe needs is defined as:
‘‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.’
86. IRP said no needs in this domain. No needs is defined in this domain as:
‘No evidence of ‘challenging’ behaviour.’
87. The ICB explained it could not find any evidence of behaviours that would impact Mr R’s care needs. He was compliant with all care provision apart from when he chose to decline it when he was very tired. There were no records of physical or verbal aggression, and the care home had referred to the use of the call bell as relating to feelings of loneliness.
88. The applicants said he rang his call bell frequently, and he was suggested to be a bit of a ‘pest’ with the bell. The applicants confirmed he got on well with the care staff and interacted with them, and when he died, the care staff were upset.
89. The IRP concluded the care needs relating to anxiety and reassurance would fit in the psychological and emotional care needs domain. The behaviour domain is to consider whether a person’s behaviour places themselves or others at risk.
90. The IRP could find no evidence to suggest Mr R displayed challenging behaviour.
91. We have reviewed the information made available to the IRP.
92. The care home records make repeated references to him being settled and calm. Whilst there are instances of him displaying anxiety, this is best considered in the Psychological and emotional needs domain. There do not appear to be any references to any aggression or challenging behaviour.
93. We understand how strongly Mr A feels about his father’s needs being severe. The records accurately reflect the IRPs conclusions, and we can see the IRP considered this domain in line with the National Framework and DST descriptors. We can see no indication of failings in relation to this point.
Drug Therapies and Medication Symptom Control
94. Mr A said his father had severe needs in this domain. Severe needs is defined as:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. Even with such monitoring the condition is usually problematic to manage. OR Severe recurrent or constant pain which is not responding to treatment. OR Non-compliance with medication, placing them at severe risk of relapse’.
95. The IRP concluded Mr R had high needs in this domain. High needs in this domain is defined as:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage. OR Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.’
96. The ICB representative said Mr R had a moderate level of need in this care domain. The ICB representative said Mr R was compliant with his medication regime. The medications could be administered by a nurse or a trained carer. The rationale for a moderate level of need in this domain was that the medication regime was non-complex, and the changes that were made to the medication were manageable.
97. The applicants explained there was complexity with regards to the oxygen that Mr R needed. When he was really struggling, the staff were not supposed to call paramedics out, they were supposed to adjust his oxygen, but they were not legally allowed to adjust oxygen levels. His pain was managed with ibuprofen gel and paracetamol. The applicants explained the main concerns were related to his breathing problems.
98. The IRP noted the prescription of Oramorph (liquid morphine) alongside GP visits and frequent checks of Mr R’s observations such as oxygen levels and pulse. The IRP asked the ICB representative whether this level of observation and management was within the expected interventions. The ICB representative said the Oramorph was administered at a low dose and could be administered by a carer. The prescription of Oramorph at this dose was recognised within the moderate descriptor.
99. The IRP set out all the medications Mr R was prescribed, as detailed in the DST. The IRP noted Mr R was usually compliant with his medication, and his pain could be managed with the medication which was usually administered by a care worker with suitable training or nursing staff. There were risks related to the potential fluctuation of his symptoms, and the ‘as required’ medications did require a certain level of monitoring. However, the IRP concluded the condition was not problematic to manage.
100. We understand how worrying it is to see a parent’s health decline and see their need for regular mediation and monitoring. We have reviewed the information made available to the IRP. The records show Mr R was compliant with his medication, and whilst he had numerous prescriptions, this was not problematic to manage. The IRP has taken into account the applicant’s views in relation to this matter and challenged the ICB’s conclusion.
Psychological and emotional needs
101. In the IRP report under this domain, the report states the family submitted a High level of need was appropriate in this domain.
The DST descriptor for high says:
‘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.’
102. The IRP concluded moderate needs in this domain. Moderate needs in this domain is defined by the DST 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.’
103. The ICB considered Mr R to have low needs in this domain. This was overruled by the IRP decision of moderate needs.
104. The ICB representative referred to the Local Review Panel notes which set out Mr R had significant anxiety regarding his diagnosis of COPD. The mental health team had been involved previously but were discharged. No medications such as antidepressants were prescribed. Mr R was able to respond to reassurance despite his periods of distress. He would use the call bell a lot, which was suggested to be due to loneliness. He slept well some nights and was brought out of his room occasionally. On the nights he did not sleep well, staff spent time with him and brought him cups of tea.
105. The applicants confirmed their father would often ring the call bell and he was often up at night drinking tea and not sleeping well. At the time of the DST, he was not going out of his room into the lounge. They said they felt Mr R ‘performed’ for the DST, as he enjoyed the attention and would put on a good act for the nurse. They said while the staff encouraged him to come out of his room, he would be embarrassed as he was constantly coughing. When the IRP asked about the reasons for him staying in his room, the applicants said it was likely mixed.
106. The IRP also asked the applicants about the impact of his anxiety. They explained he phoned them often and could be quite low, and would tear up sometimes. They said reassurance did help, and you could sometimes talk him out of it.
107. The IRP noted Mr R was diagnosed with depression, but he was not being treated for this. The evidence in relation to his sleep pattern was contradictory; the fast-track documentation said his coughing and breathing issues could impact his sleep, but at the DST, his sleep pattern was noted to be stable and sleeping well at night. During the night of 20 December 2023, he was unsettled and rang the call bell frequently. He was described as very confused during that night.
108. During the DST, Mr R explained he did have low days, and spent a lot of time in his room, but also that he enjoyed visits from his family. The care home staff said he had times when he appeared depressed and anxious, but there was no evidence to show these episodes were lengthy or frequent.
109. The IRP considered Mr R experienced anxiety in relation to his breathing, and he was on medication for anxiety and restlessness. During the period under review, Oxycodone (for anxiety and restlessness) was not administered. The IRP concluded that Mr R did have instances of higher psychological and emotional needs, but he could usually be reassured. The care home staff were able to reassure him or give him cups of tea, or he could phone his family he was prescribed additional medication at the time of the DST, which indicated increasing impact of his needs in this domain. The IRP concluded a moderate level of need in this domain.
110. We understand it can be upsetting to see a parent experience anxiety and change their behaviour because of it. We think the IRP acted in line with the National Framework when it considered Mr R’s psychological and emotional needs. The records reflect he had instances of anxiety but there are many references to him being settled and calm with no concerns. The GP records in July 2023 noted he was coping okay without mental health input. The care home staff were able to reassure him as reflected in the IRPs considerations.
111. It appears the IRP considered this domain in line with the National Framework and the DST descriptors. We can see no indications of failing.
Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?
112. The IRP applies an eligibility test to help it make a decision about an individual’s CHC eligibility. This is what we refer to as the ‘primary health need’ test. 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 an individual’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.
113. 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 Mr R’s needs.
114. The four key indicators are fundamental to the decision making, so we have looked at how the IRP considered these.
Nature
115. Section 3.3 of the practice guidance within the National Framework describes nature as ‘the characteristics of both the individual’s needs and the interventions required to meet those needs’.
116. In line with paragraph 59 of the National Framework, in the IRP’s consideration of nature we would expect to see analysis of: ‘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’.
Section 3.3 also lists questions prompts for factors that should be considered (though not specifically and individually answered) for the nature indicator:
• 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?
117. The IRP considered Mr R’s type and level of needs as identified by the Decision Support Tool, the supporting evidence, the local review panel meeting, and the written and verbal evidence supplied by the applicants. The IRP recognised his health and wellbeing was impacted by his diagnosis of COPD and heart failure, particularly in relation to his breathlessness. He needed support with nutrition and hydration, continence needs, managing his skin integrity, support with his moving and transfer, reassurance and support relating to his anxiety, and support with his medication. He required care to maintain a safe environment over a 24-hour period. The IRP summarised Mr R’s needs in each of the domains, considering the type of care required to manage these needs.
118. The IRP acknowledged Mr R required the provision of a safe and supervised environment due to his inability to care for himself over any given 24 hour period. He required arrangements to support his health, social, personal, hygiene and domestic needs, and to maintain his safety. He required support to access his GP and community health professionals as appropriate.
119. The evidence available was sufficient for the IRP to conclude the nature of Mr R’s needs did not demonstrate a primary health need.
120. We think the IRP considered all the relevant factors, including the family’s evidence, when it decided the nature of Mr R’s needs did not indicate he had a primary health need. We are satisfied it acted in line with the National Framework.
Intensity
121. Section 3.4 of the practice guidance within the National Framework says intensity ‘is about the quantity, severity and continuity of needs.’
122. 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’)’.
123. Section 3.4 also lists questions prompts for the intensity indicator:
• 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 the needs over several domains?
124. The IRP sets out that intensity relates to both the extent and severity of needs, and the support required to meet the needs.
125. The IRP considered Mr R had needs in eight of the care domains. The IRP concluded he had a high level of need within the Breathing and the Drug Therapies and Medication domains. He had moderate needs within the care domains of Continence, Skin, Mobility, and Psychological and Emotional needs. He had a low level of need with the Nutrition and Cognition domains.
126. The IRP recognised Mr R’s breathlessness at rest and on exertion impacted his other needs, such as mobility and psychological and emotional needs. The IRP noted there was no evidence of changes to care provision which would indicate his needs were not being appropriately managed. The IRP also found no evidence to suggest his needs caused a barrier to carrying out the activities of daily living.
127. The IRP concluded the care interactions and interventions were carried out in a timely manner with no specific level of urgency and no unreasonably lengthy interventions were needed. He was supported with many aspects of his care home, usually with one care worker but occasionally with two- for example when he needed to be repositioned in bed. His needs were also supported by the wider health community team through his GP services. He had been under the care of the respiratory team, but was discharged from regular review at the time of the DST. He was also assessed by the palliative care team and recommendations relating to symptom control were given.
128. The IRP concluded Mr R’s needs did not demonstrate a primary health need in relation to the intensity of his needs.
129. We think the IRP considered all the relevant factors when it decided the intensity of Mr R’s needs did not suggest he had a primary health need. The IRP took into account all the information made available to it. We are satisfied it acted in line with the National Framework.
Complexity
130. Section 3.5 of the practice guidance within the National Framework says complexity ‘is about the level of skill/knowledge required to address an individual need or the range of needs and the interface between two or more needs.’
131. In line with the National Framework, in the IRP’s consideration of complexity indicator we would expect to see analysis of: ‘how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interaction between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as where a physical health need results in the individual developing a mental health need.’
132. Section 3.5 lists the question prompts for the complexity indicator:
• How difficult is it to manage the need?
• 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 needs?
• How does the individual’s response to their condition make it more difficult to provide adequate support?
133. The IRP considered that Mr R had a range of health and social care needs across the care domains The impact of his diagnoses interacted across several domains, he was unable to manage his medication, and he needed care staff to support his daily living.
134. The IRP considered how difficult it was to manage Mr R’s needs, how problematic it was to manage his symptoms, whether the needs were related, and how they impacted on one another. The IRP considered how much knowledge and skill was required to support him, and how his response to his condition made providing support more difficult.
135. The IRP recognised there was some potential for interactions between his breathing and nutritional needs- for example, due to his breathlessness, he would take a longer time to eat and needed care staff support and supervision. There was also an interaction between his breathing and mobility, as his breathing difficulties impacted how much he could move. The IRP noted that in practice, Mr R did not have any complex needs arising from these potential interactions.
136. The IRP noted the applicant’s view that the evidence outlined a person who could become stressed and agitated which was related to his breathing. There was a potential for interactions between his medication and the monitoring of his symptoms and symptom control. He was prescribed antibiotics for a chest infection, but he was discharged from the routine follow-up care with the consultant respiratory physician. The palliative care team also recommended some medication ‘as required’ and stated this would be reviewed in January 2024.
137. The IRP concluded his response to his condition was not evidenced to make it more difficult to provide appropriate support. The IRP concluded his care needs could be delivered by staff trained to the level that would be expected within this environment, with the support of his GP and palliative care team. The IRP decided his needs did not demonstrate a primary health need in complexity.
138. The IRP considered and weighed up the evidence before making its decision. We consider the IRP considered all the relevant factors when it decided the complexity of Mr R’s needs did not suggest he had a primary health need. We are satisfied it acted in line with the National Framework.
Unpredictability
139. The final key characteristic of a person’s level of need is unpredictability. The National Framework defines it as ‘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. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.’
140. Section 3.6 of the practice guidance within the National Framework says unpredictability ‘is about the degree to which needs fluctuate and thereby create challenges in managing them. It should be noted that the identification of unpredictable needs does not, of itself, make the needs ‘predictable’ (i.e. ‘predictably unpredictable’) and they should therefore be considered as part of this key indicator.’
141. Section 3.6 lists the question prompts for the unpredictability indicator:
• Is the individual or those who support him/her able to anticipate when the needs 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 response spontaneously and appropriately?
• What level of monitoring/review is required?
142. The IRP report shows it considered the unpredictability of Mr R’s needs. It set out the trajectory of his health was consistent with what could be expected given his history, condition, and presentation. The levels of need reflected the gradual deterioration in his health. There were no sudden changes or rapid deterioration in his presentation during the period of care under review. His needs were known about and managed through suitable planned care arrangements and all necessary care was carried out satisfactorily. There was no evidence that care provisions were frequently or significantly changed.
143. The IRP highlighted there were no unpredictable requirements in relation to the arrangements necessary to manage his day-to-day needs. Some adjustments were made to his medication regime but these were not sudden or urgent. His needs in relation to the psychological and emotional needs domain did vary, but the IRP took the view that this did not go so far as to represent unpredictability within the National Framework. There was potential that his needs could change, but the slight change which actually took place did not represent an unpredictability of need which would constitute a Primary Health Need.
144. The IRP concluded his presentation was largely known to the care support staff. There were some changes regarding his breathlessness and anxiety, but these were managed and could not be considered unpredictable in nature as defined by the National Framework.
145. We think the IRP considered all the relevant factors when it decided the predictability of Mr R’s needs did not indicate he had a primary health need. It took into account all the available evidence and the views of the applicants. We are satisfied it acted in line with the National Framework.
Summary
146. The IRP showed it applied the National Framework when it considered Mr R’s CHC eligibility.
147. We recognise Mr A’s account and that he disagrees with the IRP’s decision. We do not wish to take away from his account or what he has told us about his father’s needs. We understand how distressing it is to witness a parent’s health deteriorating. We hope our statement provides him with reassurance that NHS England has suitably considered his father’s eligibility.