17. Before we decide if we should investigate 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.
18. If what happened fell far short of what should have happened, we call this a failing. When we see indications of a failing, we next look at whether that failing had a negative impact on the person in question. If we think it did, we will go on to consider what, if anything, the organisation has done to try to put things right.
Concerns about the IRP’s decision making
19. Mr A has brought specific concerns to us which we have considered together as they link to the decision making of NHS England’s IRP. We will consider overall whether NHS England reached its decision in the right way.
20. Before we go on to discuss our decision, we would like to explain some information about how an IRP reaches its decision and what this means for how we look at it.
21. Whether an individual is eligible for CHC funding is a discretionary decision. It is our role to decide if the IRP made its decision in line with the National Framework.
22. We cannot question discretionary decisions when they have been 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 that there must have been a fault in the decision-making process.
23. The purpose of the IRP is to review the procedure followed by the CCG when it made its decision about a person’s eligibility for CHC. In determining whether the CCG followed the correct process and whether it correctly applied the eligibility criteria, the IRP can recommend that the case be reconsidered by the CCG. This will address any faults identified in the process. It can also reach a view as to whether the individual should be considered to have a primary health need.
24. When we look at a complaint about an IRP, we consider whether it took account of all the relevant information when reaching its decision.
25. To help us reach a decision there are four key areas we consider.
26. Firstly, we look at whether the IRP established all the obvious, appropriate, and relevant clinical facts.
27. We have carefully considered the information provided by NHS England. The IRP report shows that the panel considered the verbal contributions from the CCG, as well as Mr A and his wife Mrs A. It also considered the case summary, continuing healthcare assessment documents, risk assessments, care home plans and records, general Practitioner (GP) records, and social services records when reaching its decision.
28. The panel also considered the domains Mr A disputed and the reasons why. In the IRP report, the panel notes his concerns relating to the procedure followed by the CCG. It considered that the notes from the original local resolution meeting (LRM) were lost and that there were delays in the claim being progressed. We note these are the same concerns Mr A has brought to us in relation to how NHS England has reached its decision.
29. Our focus will be on NHSE’s actions and how it has considered these procedural concerns. The panel noted that the case involved two appeals.
30. Following the first appeal, the meeting notes were emailed to a Commissioning Support Unit (CSU) staff member who had subsequently left the organisation, which is why the notes could not be located. We can see in the IRP report, the Chair considered this and raised concerns about why access could not be obtained to the work email account. The CSU representative present at the IRP meeting could not answer this. The Chair noted that following this another LRM was arranged.
31. In relation to the second LRM, the Chair noted that the notes were not lost but that because of the CCG’s policy at the time, the CSU did not have the authority to share them without permission, so it said Mr A could not have access to these. The panel noted the approach has now changed and documents can now be shared without requiring permission.
32. We find the approach of NHS England is in line with the National Framework Annex D: Independent Review Panel Procedures, section 2, which states:
‘An IRP’s key tasks are, at the request of NHS England, to conduct a review of the following: a) the primary health need decision by a CCG; or b) the procedure followed by a CCG in reaching a decision as to that person’s eligibility for NHS continuing healthcare and to make a recommendation to NHS England in the light of its findings on the above matters’.
33. We can see from the report, the IRP considered the concerns Mr A had in relation to the LRM notes being available to him. In relation to recommendations, we can see none were made, however this was because the policy the CSU acted in line with, which restricted notes being shared, had already been changed and therefore improvements were already in place.
34. In relation to Mr A’s concerns about the delays in the CCG processing the claim, we can see no evidence of this being raised in the IRP meeting. We can only consider concerns that were considered by NHS England, as it is our role to consider the actions of NHS England. As Mr A did not raise concerns about the delays in the IRP meeting, NHS England has not been given an opportunity to consider this. As such, we cannot look into his concerns about delays.
35. We can see from the notes of the meeting, held on the 27 September 2019, with Mr A, Mrs A, the CSU, and NHS England, that the IRP had a detailed discussion about Mr P’s needs. It allowed the family to openly discuss Mr P’s needs and any concerns they had for each domain and key indicator. We can see the panel took into account the family’s concerns throughout its considerations and allowed the family to make further submissions. This is recorded throughout the report.
36. From the IRP report, we can see the family disputed the weightings for the behaviour, psychological and emotional needs, communication, mobility, continence, skin and drug therapies and medication: symptom control domains, as well as the four key indicators.
37. For each domain and key indicator, the panel starts with the family’s submissions and their reasons for why they disagree with the domain or key indicator. It then proceeds to the CCG’s submissions. The IRP then goes on to consider the submissions when reaching a decision.
38. Based on the above, we cannot see any obvious omissions in the documents which NHS England has provided. We find NHS England obtained all available and relevant records to reach a robust decision. We have reviewed the records and can see it referred to these as part of its considerations. We cannot see any indication of failings in this part of the IRP’s consideration.
39. Secondly, we consider whether, prior to reaching its decision, the IRP had an appropriate clinically led discussion of the impact and interaction of the relevant clinical facts.
40. We can see from the IRP report, there was an appropriately constituted panel. This included the Chair, a CSU representative on behalf of the CCG, a clinical adviser to support the panel with clinical matters, and a local authority representative present to advise on social care issues. This is in line with paragraph 200 of the National Framework which states:
‘NHS England is responsible for convening independent review panels consisting of: · An independent chair (appointed by NHS England); · A CCG representative (who is not from the CCG that made the decision which is the subject of the review); · A local authority Social Services representative (who is not from a local authority where all or part of the CCG involved in the decision is located).’
41. The IRP worked through each of the domains in turn and discussed these with the CCG and the family. This was cross referenced with information in the clinical records. The IRP makes regular reference to the family’s submissions throughout the report.
42. We can see evidence in the report that the IRP considered the family’s submissions relating to the disputed domains and key indicators. It recognised their account and evidence alongside the medical evidence when reaching a decision for each of these.
43. The report shows a clinically led discussion of the key facts took place. The IRP explained the evidence it used to inform its decision making. The IRP has explained the reasons for its views on the levels of need for each of the domains. It has explained how it considered the CCG’s evidence, Mr and Mrs A’s submissions, and the records regarding each domain.
44. We have seen no evidence to suggest any facts were overlooked, marginalised, or not adequately considered during the IRP process. For this reason, we have seen no indications of failings in this part of the IRP’s process.
45. Thirdly, we consider whether the IRP’s final decision adequately considered and explained the conclusions of the clinically led discussion.
46. We can see from the report there is evidence of a detailed discussion and consideration of the four key indicators (nature, intensity, complexity, and unpredictability). The four key indicators may alone, or in combination, demonstrate a primary health need because of the quality and/or quantity of care that is needed to meet the individual’s needs. The IRP considered how each of these impacted on Mr P’s needs in turn.
47. Mr A has not detailed any specific concerns relating to each domain or key indicator. But he has explained that overall, the IRP has underscored Mr P’s needs. Therefore, we have taken an overall approach to consider if the IRP’s final decision took into account the conclusions of the clinically led discussions.
48. Paragraph 13 of Annex D: Independent Review Panel procedures says: ‘On the basis of the evidence received and the advice given at the IRP, the chair should be able to determine, in consultation with other IRP members, whether eligibility criteria have been correctly applied. The chair should have the capacity to make balanced decisions’.
49. Based on our review of the report, we can see the panel acknowledged and discussed the views of the CCG, family, clinical adviser, and local authority representative. It is evident from the report that these submissions were taken into account when reaching a decision. For example, after hearing further submissions from the family, the IRP disagreed with the weightings for the cognition domain. This was changed from moderate to severe.
50. In addition to this, we have carefully considered the medical records. Having considered the IRP report, available evidence, and the family’s submissions, we consider the IRP’s conclusions and rationales in the domains can be supported by the evidence. They are consistent with the domain descriptors and in line with the National Framework.
51. The IRP’s consideration of the nature, intensity, complexity, and unpredictability of Mr P’s needs is consistent with the evidence in the medical records (discussed below). The IRP looked at the relevant information and took into account Mr and Mrs A’s submissions. Its rationale for each of the eligibility criteria is supported by reference to the records and is in line with the National Framework.
52. The IRP has provided a clear explanation for its views about Mr P’s needs. It has used a variety of sources and evidence to show how it weighted each of the domains. It has detailed why its decision may differ to the CCG’s or the family’s. We think the IRP explained in detail how it weighed up all the evidence and came to its decision. This was in line with the National Framework, and we cannot see an indication that NHS England got anything wrong here.
53. Fourthly, we consider whether the IRP applied the appropriate eligibility tests. We also consider whether the IRP’s conclusions about them were reasonable.
54. The report shows the panel discussed the four key indicators alongside their relationship with Mr P’s daily needs.
55. We can see at the IRP meeting that the panel considered each of the key indicators in line with Mr P’s needs. We will consider the IRP’s conclusion on each key indicator below.
Nature
56. The National Framework says, ‘Nature refers to the type of needs, and the overall effect of those needs on the individual, including the type (“quality”) of interventions required to manage them’.
57. The National Framework provides some questions that professionals can consider when looking at the nature indicator. These are listed on page 96 of the National Framework and 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?
58. The report shows the panel acknowledged Mr P was diagnosed with Alzheimer’s dementia, and his medical history included cancer and gallstones, as well as him being partially deaf and registered blind. It noted he was receiving 24-hour care at a care home from the 9 April 2010. However, it focused on Mr P’s needs and the overall effect of these on him.
59. This approach is in line with the paragraph 62 of the National Framework, which says, ‘eligibility for NHS Continuing Healthcare is a decision based on an individual’s assessed needs. The diagnosis of a particular disease or condition is not in itself a determinant of eligibility for NHS Continuing Healthcare’.
60. The panel reviewed the records and noted Mr P’s impaired cognition and deteriorating health affected his ability to manage daily living activities. It noted ongoing monitoring and timely interventions were needed to observe any challenging behaviour. The panel observed there was some evidence of wandering, but these settled when Mr P was no longer mobile, from July 2010.
61. The panel found he was dependant on others to provide a safe environment, as he had limited ability to assess or recognise risks or hazards due to the level of his cognitive impairment. This is supported by Mini-Mental State Exams (MMSE) completed in 2009, which was scored as 19/30, and 13/300 when completed in 2010, which would be classified as moderate impairment.
62. Mr P was also under the care of the mental health services and was prescribed anti-dementia rivastigmine patches from August 2009. Rivastigmine is a drug used to treat mild to moderate dementia, specifically memory loss and mental changes. The panel also noted he was initially followed up by the community mental health team (CMHT) but discharged once he was in the care home.
63. The panel also found that ongoing psychological support and reassurance was required, especially at times of agitation and monitoring of his mood status. It noted evidence that Mr P was able to engage in social activities with the support of carers and the family and appeared to enjoy them as much as his cognitive ability allowed.
64. In addition, Mr P’s ability to express his needs was compromised, and he required staff to identify and anticipate his needs and observe any nonverbal clues.
65. The panel also considered Mr P’s ability to weight bear and acknowledged that when he entered the care home, he was able to weight bear, was mobile with the aid of a Zimmer frame and the guidance of one carer. But following a fall in July 2010, he was hoisted or used a stand aid with the assistance of two carers.
66. In addition to this, the panel considered the nature of Mr P’s nutritional needs and acknowledged that he required support and monitoring. Initially, he was able to take a normal diet and food, but over time he required his food to be cut up and he ate with a spoon. The panel also noted that over time he appeared to lose weight. However, there was no evidence of food supplements being prescribed, or speech and language therapy (SALT), or dietician services being involved.
67. The panel noted Mr P was also incontinent, and this was managed with incontinence aids such as pads and underwear. There was no evidence of urinary tract infections during the claim period. He did suffer from constipation and was prescribed regular aperients and encouraged to have hourly fluids.
68. In relation to skin, the panel found there was evidence of skin breakdown resulting in a pressure sore on his lower back on 11 April 2011, and this was treated by the district nurses. Pressure relieving equipment was in place and regular repositioning was undertaken by the carers. Emollient and barrier creams were prescribed.
69. It also noted Mr P suffered from three chest infections, which were treated by the GP prescribing antibiotics. It found no evidence of inhalers or nebulisers. It also found Mr P was compliant in his medication regime. There was one change to his pain relief, which was increased in relation to his prostate cancer.
70. The panel concluded that although it is recognised Mr P had a broad range of needs, in total these were of a nature and level that could reasonably be expected to be provided by a local authority.
71. We have also reviewed the records and agree with Mr A that there is evidence Mr P presented with episodes of wandering during the claim period, however, there is no evidence to suggest that specialist interventions were required to manage this behaviour.
72. The records show the staff were able to reassure and settle Mr P successfully. For example, on the 21 April 2010 it is documented he was found ‘wandering in his bedroom’ but was ‘assisted back to bed and drinks given’. Another example is on the 21 June 2010, where he was up again, the notes record that he was ‘assisted back to bed, drinks given, settled after’.
73. During the end of the claim period, there are a number of records which show that Mr P’s episodes of wandering settled, and he remained asleep and settled at night. Some examples include:
• 29 September 2010- ‘asleep and settled all night’ • 12 November 2010- ‘settled night’ • 26 February 2011- ‘settled night’
74. We can see from the records, Mr P had involvement with mental health services, however, this was in line with his dementia symptoms. During the claim period, Mr P did not require any changes to his medication or specialist intervention, which would suggest his symptoms were manageable by care staff.
75. In addition, the records show that following his fall, two carers were required to assist him with all transfers, however there is no evidence of specialist interventions outside of what the carers provided to manage transfers. The records suggest that Mr P was able to be transferred and repositioned successfully. For example, on the 16 July 2010, 24 December 2010, 28 March 2011, and 1 May 2011, it is noted he was repositioned two-hourly successfully and hoisted to his chair.
76. From the records we can also see Prostap injections were administered by district nurses every three months for his prostate cancer. His pain relief was increased from paracetamol to tramadol on the 4 May 2011. However, there is no evidence to suggest the pain was not managed thereafter. There are no further changes to the medications. In addition, there is no evidence to suggest that Mr P was non-compliant with the administration of medication. Throughout the records, and particularly the prescription and administration charts, it is noted he was given medication successfully.
77. Overall, we find there to be no evidence of specialist interventions required to manage Mr P’s needs. We have seen no evidence of SALT or a dietician involvement but can see that the GP and nurses manged his pain relief prescription and administration. We find this was not outside what was expected from the care home setting. There is no evidence to suggest care staff could not deliver the care, or any changes to this, that were required.
78. Based on this, we find there are no indications of failings in the IRP’s decision-making for this indicator. We can see the IRP considered relevant areas for the nature key indicator and have seen the IRP’s conclusions are supported by the records and are in line with the National Framework.
Intensity
79. The National Framework explains that ‘Intensity’ is about the quantity, severity, and continuity of needs.
80. From the report, we can see the panel considered the quantity and degree of Mr P’s needs. It also considered the support that was required to meet these, including the need for ongoing care.
81. We find the panel considered key questions that are outlined in the National Framework which 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?
82. The panel stated Mr P did not require one to one care and most care activities involved a standard number of staff. It also said there were no indications that care activities could not be undertaken or that they took particularly long periods of time.
83. The panel noted Mr P had needs across ten of the care domains, and it went through each of these domains. It considered if, in combination, the needs were intense in nature. The panel concluded Mr P did not require an increased number of interventions, extra carers, or lengthy periods of care. Therefore, it concluded that his needs were not intense.
84. Having reviewed the records, we find no evidence to suggest Mr P’s needs could not be addressed straightforwardly by resources available in the nursing home, with the support of the GP and community NHS services. This is evidenced by no significant changes to care plans or medications.
85. We note there were changes to pain relief, however, can see this was in line with the symptoms relating to Mr P’s prostate cancer. There were no further changes, which indicates the pain was managed.
86. We find the panel’s rationale and decision making is in line with the National Framework. From a review of the records, and Mr A’s submissions at the IRP, there was no evidence of care being needed by Mr P outside of the planned interventions. He required the support or assistance of usually one member of staff, which became two members of staff following his fall in July 2010, for personal and hygiene care. There is no evidence to suggest that particular strategies were required to deliver this care.
87. We recognise that Mr P did present with challenging behaviour, specifically wandering, however staff were able to reassure him and manage this. There is no evidence of lengthy interventions required to manage his behaviour. We have also seen no evidence to suggest his needs caused a barrier to staff carrying out necessary personal and hygiene care.
88. We have also seen no evidence, following the involvement of CMHT, of further skilled intervention or a degree of expert knowledge required to manage Mr P’s needs. Because of this, the evidence suggests his needs were straightforward and could be managed successfully.
89. We can see the panel reviewed the records and reached its conclusions, in line with the National Framework. The panel looked at the totality of the needs when reaching its conclusions. This is in line with the Department of Health and Social Care, NHS Continuing Healthcare Decision Support Tool guidance. Paragraph 33 states: ‘In all cases, the overall need, the interactions between needs in different care domains, and the evidence from risk assessments should be taken into account in determining whether a recommendation of eligibility for NHS Continuing Healthcare should be made’.
90. Further to our considerations, we have seen no indications of failings in the decision making of the IRP when considering the intensity key indicator. We find it has reached its decision with reference to the records and in line with the National Framework.
Complexity
91. The National Framework says, ‘complexity refers to how the needs arise and interact to increase the skill needed to monitor and manage the care’.
92. The report shows the panel noted there were certain interactions between various domains. It acknowledged Mr P’s cognition impacted on all other domains because of his limited understanding and awareness of risks. It says, for instance, while mobile it impacted his risk of falls because of his wandering behaviour. His cognition would have compromised his communication, however, there was no evidence that these cognitive challenges led to challenging behaviour, which was complex to manage.
93. It also acknowledged there were interacting care needs such as his mobility, skin integrity, nutrition and continence needs. However, despite this interaction there was no evidence the needs were so complex that specialist interventions were required. Most of Mr P’s care was provided by the GP or nurses.
94. The panel concluded there was no evidence that his needs made care delivery complex or complicated. It found the interactions did not require enhanced skill or knowledge to address them, and therefore did not indicate the complexity of needs associated with a primary health need.
95. We find the considerations the panel made for the complexity domain were in line with the National Framework, which provides questions that professionals can consider in considering this indicator. Page 97 include the following questions:
• 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?
96. We have also reviewed the records. We have seen Mr P received services from the CMHT, however he was discharged once he was in the care home in April 2010 (the start of the claim period). There is no evidence of further specialist inventions. Throughout the claim period, there is no evidence of further input required from skilled or specialist professionals.
97. We acknowledge episodes of wandering during the start of the claim period, however there is no evidence to suggest his needs caused complex interactions or that his needs were difficult to manage. The records show staff were able to successfully carry out personal hygiene tasks.
98. Having considered the above, we find no indications of failings in the decision making of NHS England. Having reviewed the records, we find no evidence to suggest the interaction between his needs led to an increase in the level of skills or knowledge, or carer time, that was required. We are satisfied the IRP has considered the complexity indicator, in line with the National Framework, and has based its decision in line with the records.
99. We therefore find no indications of failings in NHS England’s consideration of the complexity key indicator.
Unpredictability
100. The National Framework sets out that unpredictability is concerned with the degree to which needs fluctuate, thereby creating challenges in meeting them on a day-to-day basis.
101. The report shows the panel looked at how Mr P’s needs fluctuated, and the likely challenges that this may create in managing them. The panel’s consideration looked at key questions in the National Framework which are:
• 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?
102. We can see from the report, the panel considered Mr P’s condition and its stability. It acknowledged that his health did deteriorate slowly over time, however, his condition was not unstable at any point. It found there was no evidence that Mr P’s level of support changed frequently or at short notice.
103. It found that during the period, there was nothing to suggest that his needs changed, or fluctuated significantly, on a day-to-day basis. There was nothing to indicate that frequent or significant changes were required to his care plans.
104. In summary, it noted Mr P required carers who could anticipate and mange risks and his wellbeing, but the ability to recognise and prepare for those care needs were not of a level of skills or knowledge above what could be expected of a local authority provided service.
105. We have reviewed information provided by Mr A in the IRP meeting as well as the evidence that it had available. Based on this, we have seen no evidence that Mr P’s needs were so unpredictable that they were difficult to manage, and therefore the records support the IRP’s rationale.
106. For example, despite his wandering there were no changes to care plans or medications, which indicates that staff were able to predict his behaviour and manage it accordingly. There is no evidence to suggest any reluctance to accept care interventions.
107. We note Mr P’s health did deteriorate during the claim period however this was gradual. We have seen no evidence to suggest that there were sudden changes or a rapid deterioration. We can see from the records, Mr P’s cognitive functioning declined over time, but this was expected from the Alzheimer’s disease that he suffered. On the whole, his needs were predictable and managed through straightforward personal care arrangements.
108. We find the records support the IRP’s rationale that there were no sudden or critical changes in the care responses that were required, and skilled interventions were not needed. The panel stated there was no unpredictability regarding Mr P’s wellbeing.
109. Based on the above consideration, we find there is no evidence to suggest failings in the decision making of NHS England. The panel considered this key indicator in line with the National Framework. It considered the records to identify if any interventions were required. We find the IRP’s conclusions are in line with the National Framework and are supported by the records.
Conclusion
110. We have carefully considered both the information Mr A and NHS England have provided to us. We find there are no indications that something has gone wrong in this complaint and therefore, we will not take any further action.
111. We appreciate Mr A has been pursuing his concerns for a long time and that doing so has caused him distress. We were sorry to learn of his concerns and hope that our thorough explanations provide reassurance that the right process has been followed.