15. Whether an individual is eligible for NHS continuing healthcare funding is a discretionary decision (based on opinion, reason, and judgement). It is our role to decide if the IRP made its decision in line with the National Framework. 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, and we cannot change or alter these.
Disputed domains
Behaviour
16. The IRP weighted this domain as moderate. The descriptor for moderate is:
17. ‘‘Challenging’ behaviour that follows a predictable pattern. The risk assessment indicates a pattern of behaviour that can be managed by skilled carers or care workers who are able to maintain a level of behaviour that does not pose a risk to self, others, or property. The person is nearly always compliant with care.’
18. The complainants say their mother was taken into care as she was at risk of wandering, and police intervention. She thinks the domain should have been weighted as high.
19. The descriptor for high is:
20. ‘‘Challenging’ behaviour that poses a predictable risk to self, others, or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.’
21. The IRP report says there was no evidence to suggest Mrs K’s behaviour was a concern. Her GP was not involved, and she did not need referring to the mental health services. She did not need medications for the management of her behaviour.
22. The IRP report acknowledges that the family accepted their mother was not violent or aggressive. They say she refused both medication and to eat. We will consider issues with medication and eating under the relevant domains.
23. The National Framework describes behaviour as:
24. ‘Behaviour: Human behaviour is complex, hard to categorise, and may be difficult to manage. Challenging behaviour in this domain includes but is not limited to:
a. aggression, violence, or passive non-aggressive behaviour b. severe disinhibition c. intractable noisiness or restlessness d. resistance to necessary care and treatment e. severe fluctuations in mental state f. extreme frustration associated with communication difficulties g. inappropriate interference with others h. identified high risk of suicide
25. ‘The assessment of needs of an individual with serious behavioural issues should include specific consideration of the risk(s) to, themselves, others or property with particular attention to aggression, self-harm and self-neglect and any other behaviour(s), irrespective of their living environment.’
26. The records show, at a GP review on 19 September 2011, Mrs K was not experiencing mental health problems. She would chat to the carers and her behaviour was noted to be ‘ok’. An entry on 11 June 2010, says Mrs K could be resistive at times. However, if staff talked her through what was happening, she usually cooperated. It says she was not aggressive.
27. There are no entries in the records to show frequent episodes of challenging behaviour. There are also no instances of verbal or physical aggression. The records support that Mrs K was generally pleasant, happy, and sociable.
28. Staff did not need to contact Mrs K’s GP or the mental health liaison team for support with Mrs K’s behaviour. There were no care plans in place to address behavioural needs. The evidence supports that staff could deliver care at this time. Her behaviour did not appear to need skilled, prompt, or emergency responses outside of her care planning. She did not need any specialist support for behavioural issues.
29. We have looked at the complainant’s account of Mrs K’s needs in this domain. We appreciate their concerns around her eating, drinking, and taking medication. This will be considered in detail under the nutrition and medication domains. We recognise the family say Mrs K could be uncooperative. Generally, the records show that Mrs K was compliant with her care. The IRP recognised there were some instances of noncompliance and resistance.
30. Having considered the IRP report, available evidence, and the complainants’ views, we think the IRP’s rationale and weighting is supported by the records. It is consistent with the domain descriptors and in line with the National Framework. We have seen no failings in the IRP’s consideration of this domain.
Cognition
31. The IRP weighted this domain as high. The descriptor for high is:
32. ‘Cognitive impairment that could include frequent short-term memory issues and maybe disorientation to time and place. The individual has awareness of only a limited range of needs and basic risks. Although they may be able to make some choices appropriate to need on a limited range of issues, they are unable to consistently do so on most issues, even with supervision, prompting or assistance. The individual finds it difficult even with supervision, prompting or assistance to make decisions about key aspects of their lives, which consequently puts them at high risk of harm, neglect or health deterioration.’
33. The complainants say their mother had no short term memory, no idea of time or place, was failing to eat and drink, and was neglecting all personal hygiene. The complainants say she could not recognise anyone but her most frequent visitors. They think the evidence is consistent with the severe descriptor.
34. The descriptor for severe is:
35. ‘Cognitive impairment that may, for example, include, marked short-term memory issues, problems with long-term memory or severe disorientation to time, place or person. The individual is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate their basic needs and to protect them from harm, neglect or health deterioration.’
36. The IRP report says there is some contradictory evidence. This is because there was some awareness noted, and she was still attempting to feed herself in 2010. However, Mrs K was also disorientated regarding time, place, and person, with long and short term memory loss.
37. The records show in November 2008 Mrs K could communicate when she wanted to. In 2009, it says she could be quick witted. In June 2010, it is noted that Mrs K would not initiate conversation, however staff noted her responses appeared accurate.
38. There are some contradictory entries, in keeping with what NHSE found. In May 2008, it says Mrs K had no insight, even with simple instructions. On 26 February 2009, it says Mrs K joined in conversations in the lounge.
39. A review in September 2009 says Mrs K retained all her social skills but had no comprehension of her memory loss. At this point in time, it was said she recognised all of her family that regularly visited her.
40. In May 2010, Mrs K’s care plan says she could communicate with staff well but often got mixed up. It is recorded she had a wicked sense of humour and loved talking about the old days. In July 2010, the records show Mrs K feeding herself and helping with washing her own hands and face. In August, she spoke to her sister on the telephone.
41. There are no recorded mini mental state examinations, and there are limited records for this domain. It is frequently recorded that Mrs K liked to socialise. The evidence supports that she could help with simple tasks like washing and dressing herself, with assistance. It is acknowledged that she could also get mixed up.
42. We recognise the complainant’s views about their mother’s cognition. It is acknowledged that she had a diagnosis of vascular dementia/Alzheimer’s disease. She had short and long term memory problems. The IRP considered the complainants views and took this into account.
43. Having considered the IRP report, available evidence, and the complainant’s views, we think the IRP’s weighting and rationale can be supported. It is consistent with the domain descriptors and in line with the National Framework. We have seen no failings in the IRP’s consideration of this domain.
Psychological and Emotional
44. The IRP weighted this domain as low. The descriptor for low is:
45. ‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which are having an impact on their health and/or well-being but respond to prompts and reassurance. OR Requires prompts to motivate self towards activity and to engage them in care planning, support, and/or daily activities.’
46. The complainants say their mother had psychological and emotional needs, but she was just unable to express them. The complainants say their mother became withdrawn in the care home. She did not work with carers about decisions. Her mood could be variable, and she was totally isolated. They think the evidence is consistent with the high descriptor.
47. The descriptor for high is:
48. ‘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.’
49. The IRP report says there was no evidence that Mrs K had significant episodes of anxiety or mood disturbances. It acknowledged she needed reassurance, but says she responded well to this. The IRP felt Mrs K could not have made a conscious decision to withdraw, due to her cognitive impairment.
50. We have carefully considered the records. For the most part, the records evidence Mrs K as being settled and responding well to care interventions. She generally slept well. Mrs K was often described to be in a lovely or cheerful mood.
51. On 30 January 2009, Mrs K was described as pleasantly confused and always smiling. Her communication care plan says she happily sits in the lounge, but with no insight as to what was going on. The records indicate Mrs K may have taken part in some activities. It is noted, on 22 June 2009, that if staff have meaningful conversations with Mrs K this improves her wellbeing. There are several entries throughout 2010 showing she was chatty, cheerful, happy, and laughing.
52. Mrs K’s social care plan acknowledges she was very happy and smiled a lot. There is no evidence to suggest she was suffering from severe mood disturbances, or hallucinations, impacting on her everyday wellbeing.
53. This is not to detract from the needs Mrs K did have, and we recognise she could suffer agitation and distress at times. She often needed reassurance from carers. Generally, the evidence supports she responded well to prompts and reassurance.
54. We recognise the family’s comments about their mother being withdrawn. The records support this view on occasion. There are also frequent entries showing Mrs K joined in with residents and chatted to staff. We have not seen evidence to suggest Mrs K withdrew from attempts to engage in her care. She generally was compliant with the carers who gave her help and support.
55. There is a difference between someone actively choosing to withdraw and withdrawal being a side effect of someone’s inability to join in. As Mrs K had a high weighting in cognition, it is possible she was not joining in with activities because of her inability to join in. This can be the case with dementia.
56. The evidence does not show that Mrs K’s psychological and emotional needs created a barrier for staff providing her care. We have seen no evidence to show she needed specialist interventions outside of her care plan. There was no mental health input, or prescribed medication given, to manage any psychological or emotional needs.
57. We have carefully considered the complainant’s view about Mrs K’s psychological and emotional needs. We recognise their views that the IRP has considered this and unfortunately there are no records available for 2011.
58. Having considered the IRP report, available evidence, and the complainant’s view, we think the IRP’s weighting and rationale can be supported. It is consistent with the domain descriptors and in line with the National Framework. We have seen no failings in the IRP’s consideration of this domain.
Communication
59. The IRP weighted this domain as moderate. The descriptor for moderate is:
60. ‘Communication about needs is difficult to understand or interpret or the individual is sometimes unable to reliably communicate, even when assisted. Carers or care workers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.’
61. The complainants say when their mother arrived at the care home she could respond to basic questions. They say in 2010 she became unable to speak. She could not express any needs or initiate conversation. In 2011, she was often in a semi-conscious state. They think the evidence from 2010 onwards is consistent with the moderate descriptor increasing to high.
62. The descriptor for high is:
63. ‘Unable to reliably communicate their needs at any time and in any way, even when all practicable steps to assist them have been taken. The person has to have most of their needs anticipated because of their inability to communicate them.’
64. The IRP report says that Mrs K could not reliably communicate, but the evidence describes she had variable needs. It says her Speech and Language Therapy (SALT) referral, in 2010, indicates she could communicate but did not initiate communication.
65. The IRP referred to Mrs K having a good sense of humour and being chatty. However, it also recognised this does not necessarily mean she could communicate her needs or understand.
66. Mrs K’s communication care plan says that in February 2010 she could communicate with staff, but she got her words mixed up. It acknowledges she could get frustrated trying to express her feelings. Records from May 2010 say she loved to talk about the old days.
67. On 3 August 2010, Mrs K spoke with her sister on the phone. On 3 September 2010, the records indicate Mrs K was happy and talkative. The records show on 4 September Mrs K was making jokes. On 6 October 2010, the records show she was alert and chatty.
68. The IRP considered the complainants view and recognised Mrs K’s needs were variable. There is limited evidence for this domain in 2011.
69. Communication is not just verbal and can include non-verbal signs and signals. The evidence does suggest Mrs K’s communication could be unreliable. The evidence suggests there were some signs of communication throughout the period.
70. Having considered the IRP report, the available evidence, and the complainant’s views, we think the IRP’s weighting and rationale can be supported. It aligns with the domain descriptor and is in line with the National Framework. We have seen no failings in the IRP’s consideration of this domain.
Mobility
71. The IRP weighted this domain as high. The descriptor for high is:
72. ‘Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning. OR Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate. OR At a high risk of falls (as evidenced in a falls history and risk assessment). OR Involuntary spasms or contractures placing the individual or others at risk.’
73. The complainants say their mother needed a minimum of two carers to assist with any movement. She could not adopt the position needed to walk or stand. The complainants say there are constant references to their mother going rigid or leaning backwards. They think that from 2010, the evidence is consistent with the severe descriptor.
74. The descriptor for severe is:
75. ‘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.’
76. The IRP report says there were no documented falls in 2010 or 2011. There were a high number of falls in 2008, however, and the risk assessment deemed her to be high risk. The IRP did not find evidence of a change of need in 2010.
77. It is documented on 14 August 2010 that staff used a moving and handling belt to transfer Mrs K from her bed to a chair as she was too sleepy. This does not appear to have always been used. On 27 August, the records say her mobility was ‘not too bad when standing up’.
78. On 4 September, Mrs K walked well with two care staff. Staff sometimes used a wheelchair. There is no evidence to support Mrs K needed support from more than two carers at any time.
79. We recognise the complainants’ views, and that Mrs K had some issues with mobilising. The IRP recognised this and took the family’s view into account. It did not find evidence that Mrs K was completely immobile.
80. Having considered the IRP report, the available evidence, and the complainant’s views, we think the IRP’s weighting and rationale can be supported. It is consistent with the domain descriptor and is in line with the National Framework. We have seen no failings in the IRP’s consideration of this domain.
Continence
81. The IRP weighted this domain as moderate. The descriptor for moderate is:
82. ‘Continence care is routine but requires monitoring to minimise risks, for example those associated with urinary catheters, double incontinence, chronic urinary tract infections and/or the management of constipation.’
83. The complainants say their mother was doubly incontinent, and regularly needed medication to treat severe constipation. They say she was admitted to hospital in 2010 for suspected constipation, and her needs were above routine. The complainants say their mother had regular visits from district nurses to manage her continence, and she needed manual evacuations. They think the evidence is consistent with the moderate and then high descriptor, from 2010.
84. The descriptor for high is:
85. ‘Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs, manual evacuations, frequent re-catheterisation.’
86. The IRP report recognises Mrs K was doubly incontinent and that she was treated for constipation with medication and enemas. A bowel blockage was suspected on one occasion and treated. It says there is no documented evidence of manual evacuations in the records.
87. The evidence shows district nurses attended to carry out an enema on 19 August 2008 (a procedure to stimulate stool evacuation). We can see that Mrs K also had a bowel obstruction in August 2010. Mrs K went into hospital for five days on 18 August 2010. The issue appears to have resolved after this.
88. The evidence does not suggest this was something that happened frequently. There is no further evidence to suggest Mrs K needed procedures, such as an enema, during the period. We cannot see that Mrs K needed timely and skilled intervention beyond routine care, such as frequent bladder wash outs, manual evacuations, or frequent catheterisation.
89. We acknowledge the complainants’ comments about their mother’s continence needs. We recognise their mother was doubly incontinent throughout the period, and took medication for constipation, as they have correctly told us. The records are supportive of this. The IRP recognised this in its consideration of this domain. It also considered that Mrs K had two Urinary Tract Infections (UTI’s) during the period.
90. Having considered the IRP report, the available evidence, and the complainant’s views, we think the IRP’s rationale can be supported. It is consistent with the domain descriptors and is in line with the National Framework. We have seen no failings in the IRP’s consideration of the domain.
Drugs and Medications: Symptom Control
91. The IRP weighted this domain as moderate. The descriptor for moderate is:
92. ‘Requires the administration of medication (by a registered nurse, carer or care worker) due to: non-concordance or non-compliance, or type of medication (for example insulin), or route of medication (for example PEG,). OR Moderate pain which follows a predictable pattern; or other symptoms which are having a moderate effect on other domains or on the provision of care.’
93. The complainants say their mother was on regular medication for constipation. She also needed antibiotics for chest infections, UTI’s, and painkillers. The complainants say their mother needed staff to give her all medications as she could not understand how to take it herself. She was sometimes non-compliant. They think the evidence is consistent with the high descriptor.
94. The descriptor for high is:
95. ‘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 IRP report acknowledges there were some instances of noncompliance with Mrs K taking her medication. It said she generally was compliant throughout the period. The IRP found Mrs K’s medication routine was not complex. She did not need any prescribed tranquilisers, controlled substances, or injections which needed clinical judgement to administer, due to the potential fluctuation or risks.
97. The records show staff needed to administer Mrs K’s medication. In April 2008, the GP increased Mrs K’s co-codamol prescription to help with pain. The GP reduced this in April 2009.
98. Care staff regularly documented throughout the period that Mrs K took her medication well. Mrs K was able to take her medication orally. The IRP acknowledged there could be some incidents of noncompliance. This does not appear to either be frequent or prevented staff from successfully delivering care.
99. Mrs K’s medication routine did not appear to be complex. We recognise that Mrs K could not understand her medication routine or manage this independently. It is likely, because of her cognition, she was not aware of her medications. She needed help and support to make sure she followed the routine.
100. The evidence does not suggest that there were any substantial risks associated with the potential fluctuation of her medication condition or mental state. There was oversight from her GP on her medication routine. Her GP made changes on occasion, but this was not frequent.
101. During the period, there was no input sought from specialists to manage Mrs K’s medication needs or pain. There were no emergency or unplanned interventions needed relating to her medication needs. There does not appear to have been any risks associated with her routine, such as the route of her medication, for example a PEG (procedure where a feeding tube is placed into the stomach).
102. We appreciate the complainant’s account about their mother’s needs. They have told us that she was totally reliant on others, sometimes spat out her medication, and could not understand the impact of not taking her medication. There is evidence to support this. We think the IRP took this into consideration.
103. Having considered the IRP report, the available evidence, and the complainants view, we think the IRP’s weighting and rationale can be supported. It aligns with the domain descriptor and is in line with the National Framework. We have seen no failings in the IRP’s consideration of this domain.
Altered States of Consciousness (ASC)
104. The IRP weighted this domain as low. The descriptor for low is:
105. ‘History of ASC but it is effectively managed and there is a low risk of harm’.
106. The complainants say in 2008, and 2010, their mother’s GP decided she may have had a small stroke. On her admission to hospital in 2010, she was unconscious or semiconscious for several days until her death. They think that from 2011, the evidence is consistent with the moderate to high descriptor.
107. The descriptor for moderate is:
108. ‘Occasional (monthly or less frequently) episodes of ASC that require the supervision of a carer or care worker to minimise any risk of harm.’
109. The descriptor for high is:
110. ‘Frequent episodes of ASC that require the supervision of a carer or care worker to minimise the risk of harm. OR Occasional ASCs that require skilled intervention to reduce the risk of harm.’
111. The IRP recognised evidence of a history of potential strokes. It acknowledged Mrs K had a possible stroke at the start of the period, and in 2010. The diagnosis was inconclusive. However, the IRP indicated there was a potential history.
112. The evidence does not indicate that Mrs K suffered from monthly, or less frequent, episodes of ASC that needed supervision to minimise risk of harm.
113. There is no documented evidence of certain Transient Ischemic Attacks (TIA) (mini stroke). The IRP accepted the complainant’s evidence and reflected on Mrs K’s potential history of TIA’s as part of its consideration.
114. We have seen no evidence of any incidents where skilled intervention was needed to minimise the risk of Mrs K losing consciousness. Our view is that the IRP took the family’s view into account.
115. Having considered the IRP report, the available evidence, and the complainant’s views, we think the IRP weighting and rationale can be supported. It is consistent with the domain descriptor and in line with the National Framework. We have seen no failings in the IRP’s consideration of the domain.
Procedural concerns
116. The complainants say they have concerns that the IRP did not address the CCG’s procedural failings. They raised issues with the CCG’s original assessment process. They also explained there were missing medical records from 2011. They also have concerns with the process the IRP followed. We have carefully considered these.
117. The purpose of the IRP is to review the procedure the CCG followed in making a decision about a person’s eligibility, or their primary health need. In reaching a view about whether the CCG followed the correct process, and whether it correctly applied the eligibility criteria, the IRP can recommend that the case should be reconsidered by the CCG. This includes addressing 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. When we look at a complaint about an IRP, we consider whether it took account of all the relevant information provided to it in reaching its decision.
118. There is evidence to show that the IRP considered whether Mrs K was eligible, in line with the National Framework. The evidence confirms that Mrs K’s healthcare needs, within each domain, were discussed along with the evidence provided to support each domain. The IRP explained how it considered each of the four key indicators in line with the National Framework.
119. It is clear that the IRP considered evidence from a number of sources including the submissions from the complainants. The complainants were present at the IRP, and it is clear from the report they had the opportunity to present their views, and these were considered. We have seen no indications of failings in the IRP’s consideration of the case.
120. The IRP chair acknowledged the complainant’s concerns. It recognised there were errors in the assessment process. It also acknowledged there were missing records, which could not be found by various parties.
121. The IRP looked at what the CCG had done to rectify its mistakes. At the IRP, the CCG apologised for its actions regarding the initial assessment. It explained it would escalate the issues to the appeals lead. The CCG explained the assessments were done during a period of time where there were a lot of shortcomings. The team has now closed. It talked through how the CCG now has better systems in place. It acknowledged the errors were not acceptable.
122. The IRP said the CCG had apologised and provided responses to the complaints. It recognised their frustrations and acknowledged the CCG’s delays and errors caused distress to the family. Overall, the IRP was satisfied that an assessment of need had been carried out, which was evidenced by the supporting documentation.
123. We recognise the complainant’s views that the process followed by the CCG was to deny CHC funding. They feel this impacted on the overall eligibility decision. It is worth noting that the IRP gave a fresh independent view of the eligibility decision. The IRP’s decision supersedes the CCG’s assessment.
124. It is clear some things appear to have gone wrong at a local level with the CCG. Our role is to look at the steps the IRP took to address these concerns.
125. Our view is that the IRP highlighted the mistakes with the overall quality of the CCG’s process. It felt the CCG’s explanations, apologies and assurances would be taken on board to continuously improve the service. It was satisfied the CCG had made changes to put things right with the process. We cannot see any failings in how the IRP considered the quality of the assessment process.
IRP applied wrong criteria
126. The complainants say that the IRP applied the wrong criteria in their mother’s case. The relevant criteria that the IRP should use is the National Framework. There are multiple versions of the National Framework depending on the time period concerned.
127. The complainants say the CCG completed their mother’s decision support tool (DST) (a tool for assessing eligibility) in 2012. Therefore, they feel the IRP should have used the 2012 version of the National Framework at the IRP on 15 May 2019. The IRP used the 2018 version of the National Framework.
128. The complainants say it is clear their mother would have been eligible under the 2012 version of the National Framework, as it became more stringent in 2018. We have considered this further.
129. All three versions of the National Framework set out that the role of the IRP is to ensure the CCG’s decision was made in line with the National Framework. This means reviewing the domains and key indicators alongside the evidence from the time.
130. The 2012 and 2018 versions of the National Framework are very similar. The eligibility criteria are the same. The descriptors and four key indicators referred to do not change. The updated Framework is intended to provide more guidance and clarity for all parties involved.
131. The 2018 version of the Framework says:
132. ‘The updated National Tools should be used from 1st October 2018 alongside the updated National Framework’.
133. ‘Importantly, none of the 2018 amendments and clarifications to the National Framework, Practice Guidance, annexes or National Tools are intended to change the eligibility criteria for NHS Continuing Healthcare’.
134. There is no evidence to show that if the IRP used an earlier version of the National Framework, it would have reached a different decision. This is because the principles are the same. Based on this, we have seen no failings here.
Conclusion
135. We have considered whether the IRP looked at all the relevant evidence when reaching the view that the CCG’s decision was sound. We appreciate that Mrs K needed care and support to keep her safe and well. She needed access to supervision. We do not wish to detract from what the complainants have told us or the needs their mother had. Their account and experience are an important and invaluable source of information.
136. We have seen no evidence that NHSE failed to meet its obligations under the National Framework. We think its decision is supported by the evidence in the medical and care records.