15. Before we decide if we should investigate a complaint, we look at whether there are signs the organisation concerned has got something wrong. We do this by comparing what should have happened with what did happen. 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.
16. Having done this, we have seen that the IRP has not robustly considered the evidence presented in the breathing, nutrition, continence, psychological and emotional, drugs and medication, altered states of consciousness domains, or the four key indicators and well managed needs principle.
Domains
Breathing
17. Mr A disputes the IRP’s finding in the behaviour domain. He considers that his father’s needs were moderate.
18. The National Framework sets out the descriptors for the weightings in each domain area. It says the descriptor for moderate is:
‘Shortness of breath or a condition which may require the use of inhalers or a nebuliser and limit some daily living activities.
OR Episodes of breathlessness that do not consistently respond to management and limit some daily living activities.
OR Requires any of the following: low level oxygen therapy (24%).
room air ventilators via a facial or nasal mask.
other therapeutic appliances to maintain airflow where individual can still spontaneously breathe e.g. CPAP (Continuous Positive Airways Pressure) to manage obstructive apnoea during sleep.’
19. Mr A says Mr E relied on diaphragmatic breathing as his intercostal muscles were paralysed. This means he had severely reduced lung capacity and impaired ability to clear secretions. It made him susceptible to chest infections which also caused sleep deprivation. During secretions, he needed an assisted cough to be carried out by his carers. His reduced lung capacity resulted in episodes of breathlessness that limited his daily activities.
20. The IRP disagreed with the CCG that Mr E had no needs in this domain. The IRP said his needs were low.
21. The descriptor for low is:
‘Shortness of breath or a condition which may require the use of inhalers or a nebuliser and has no impact on daily living activities.
OR Episodes of breathlessness that readily respond to management and have no impact on daily living activities.’
22. The IRP said Mr E was administered oxygen on one occasion following a chest infection and there was no repeat of such an event. Mr E was drowsy or lethargic - which would not be termed as being the same as breathlessness. There were no interventions made to cause a cough reflex, cough assist or any concerns recorded from the GP. Overall, there were no apparent problems in practice about Mr E’s breathing or direct consequences for his wider welfare and daily activities.
23. The IRP said he did need suitable monitoring for chest infections linked to his injury, which the IRP judged, on balance, showed a low level of need.
24. Our adviser said the IRP’s decision in this domain is not supported by the evidence available.
25. We can see the IRP considered the evidence presented in the breathing domain.
However, whilst there is much evidence to support that Mr E had infrequent problems with his breathing (pages 65 and 106 in case file), there is also evidence that he had a mild dysphagia (difficulty in swallowing) and needed careful positioning and monitoring when eating. This was to minimise the risk of aspiration and therefore, chest infections (Speech and Language Therapy reports - pages 435 and 439-441 in the case file).
26. The advocate from the Spinal Injuries Association (SIA) gave evidence that due to the weakness of chest muscles a tetraplegic individual (paralysis of all four limbs, and trunk of the body below the injury to the spinal cord) is at greater risk of developing a chest infection. Also, that Mr E needed assisted coughs to ensure that his lungs were clear (SIA Advocacy report - page 136 in the case file).
27. Therefore, we feel there is an indication of a failing here as the rationale for the IRP’s decision in this domain is not supported by the evidence available. It appears Mr E’s needs were not just at the level set out in the low descriptor. It has not acted in line with the National Framework.
Nutrition
28. Mr A disputes the IRP’s finding in the nutrition domain. He considers that his father’s needs were high.
29. The descriptor for high is:
‘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.’
30. Mr A says because Mr E’s chest muscles were paralysed, he had no effective ability to cough and clear his throat. Therefore, he was at a high risk of dysphagia (choking) that needed skilled intervention (assisted coughs) from his carers. Without this intervention, he was unable to clear and maintain his airways. Providing assisted coughs is a skilled technique that comes with significant risk (broken ribs) if not done correctly.
31. Mr A says whilst Mr E was able to eat, the impairment to his hands meant that he needed specially adapted cutlery to allow him to eat. He needed his food to be cut up as he was unable to do this for himself.
32. It is documented within the IRP report that the speech and language therapy (SALT) team reviewed Mr E in September 2017. However, he was discharged from the service in February 2018. He had a diagnosis of mild oro-pharyngeal dysphagia (a medical condition that causes a disruption or delay in swallowing).
33. The IRP agreed with the CCG that Mr E had moderate needs in this domain.
34. The descriptor for moderate is:
‘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.’
35. The IRP said Mr E was assessed by SALT while in hospital in the summer of 2017 due to a chest infection, and on two later occasions, in January and February 2018. After this he was discharged from the service. He was placed on a pureed diet initially, then mashable (both of which he was reported to dislike), before returning to normal consistency foods. Mr E needed placing in a suitable posture for feeding and drinking and supplied a normal diet and fluids. There was a diagnosis of mild oro-pharyngeal dysphagia. There was no care plan for cough assist or similar.
36. The IRP found a moderate level of need because Mr E needed physical help with feeding, and a suitable degree of supervision and monitoring. Staff were patient and allowed Mr E to take a long time over mealtimes, allowing space for necessary chewing and his desire to savour food. His weight was stable, with a healthy BMI, and no risk nutritionally.
37. Our adviser said the IRP’s decision in this domain is not supported by the evidence available.
38. We cannot see that the IRP’s rationale considers that Mr E was known to have a mild dysphagia as found by the SALT team. He originally needed a soft diet but was later assessed as being able to manage a normal consistency diet and fluids. This was if he was positioned correctly, took single sips of fluid only without a straw and avoided problematic foods (flaky or hard to chew). He needed to be fully alert when eating and drinking and needed feeding (speech and language therapy reports – pages 64 and 102, pages 435 and 439-441 in the case file).
39. We can see Mr E also needed subcutaneous fluids (fluid injected just under the skin that is gradually absorbed into the body system to maintain hydration) on 30 December 2017 before his admission to hospital for urosepsis (a type of sepsis that is caused by an infection in the urinary tract).
40. Therefore, we feel there is an indication of a failing here as the rationale for the IRP’s decision in this domain is not supported by the evidence available. It appears Mr E’s needs were not just at the level set out in the moderate descriptor. It has not acted in line with the National Framework.
Continence
41. Mr A disputes the IRP’s finding in the continence domain. He considers that his father’s needs were high.
42. The descriptor for high is:
‘Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation).’
43. Mr A says Mr E had double incontinence and was unable to open his bowels normally. His bowel care was not routine. Mr E’s manual evacuation and further bowel management was not implemented due to staff issues.
44. The IRP agreed with the CCG that Mr E had moderate needs in this domain.
45. The descriptor for moderate is:
‘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 or other bowel problems.’
46. The IRP said Mr E had a suprapubic catheter in situ (original place) which was changed up to every six weeks. All necessary maintenance was carried out by a duty nurse at the home and there were no reported complications. There were some ongoing problems with returning urine infections (UTIs) which were treated when needed with antibiotics.
47. The IRP said manual evacuation was not an option as no staff were trained or willing to carry it out. This was potentially an unmanaged need. The IRP recommended that there should have been a bowel management review carried out for Mr E.
48. Overall the IRP said Mr E’s described needs indicated a moderate level of need. His continence care was straightforward in its components and demands made of care staff, and the registered nurse. There was no frequency of bladder washouts or catheter replacement, for instance.
49. Our adviser said the IRP’s decision in this domain is not supported by the evidence available.
50. We can see Mr E needed a supra-pubic catheter which was replaced every three months (earlier if needed). He also needed bowel management of manual evacuation, aperient medication (any oral agent that promotes the expulsion of faeces) and enemas when necessary.
51. He was prone to urinary tract infections (UTIs) and was hospitalised in December 2017, having developed a small bowel obstruction and urosepsis.
52. We can see no mention of the risk of autonomic dysreflexia (ADR) in this domain. ADR is a condition that often emerges after a spinal injury. It is when the person experiences a sudden onset of excessively high blood pressure and is potentially life threatening. Common causes of ADR are bladder or bowel over-distention, from urine retention or faeces being compacted. Whilst there is no evidence to suggest that Mr E experienced episodes of ADR, it is a feature of spinal injury presentation that should not be marginalised. The IRP should have considered Mr E’s risk.
53. We cannot see that the IRP considered the need for manual evacuation of the bowel for which carers and nurses need to complete training and competency testing before being able to carry it out for a patient (SIA report page 135 in the case file).
54. The case file (page 135 onwards) has detailed information and fact sheets which informs the IRP of this condition and the care needed when it happens.
55. We can see Mr E’s presentation is described at pages 52,63, 65, 102, 104, 139, 235-239 and 425 in the case file.
56. Therefore, we feel there is an indication of a failing here as the rationale for the IRP’s decision in this domain is not supported by the evidence available. It appears Mr E’s needs were not just at the level set out in the moderate descriptor. It has not acted in line with the National Framework.
Mobility
57. Mr A disputes the IRP’s finding in the mobility domain. He considers that his father’s needs were severe.
58. The descriptor for severe is:
‘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. Mr A says Mr E’s spinal injury, repositioning and transfers were a critical aspect of his daily care. There was no physiotherapy and occupational therapy input and detailed repositioning and transfer protocols within his care plan. This however, cannot be cited as a factor in the weighting of this domain, as Mr E’s own words and the mobility care plan shows the complexity of his mobility needs.
60. Mr E was at a very high risk of developing pressure sores due to his immobility and incontinence. He reported excruciating pain during transfers.
61. The IRP agreed with the CCG that Mr E had high needs in this domain.
62. The descriptor for high is:
‘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.’
63. The IRP said the difference of view about the appropriate level of need was due to interpretation of the term ‘positioning is critical’ from the descriptor for a severe level of need. As advised by the IRP’s clinical adviser, it interpreted this term to mean there was an immediate and significant risk of serious physical harm and injury when movement or transfers were carried out. An individual would usually need the involvement of probably three or more care staff, with special training, to accept and monitor such careful and planned arrangements.
64. The IRP said it would have expected, for example, the GP to have perhaps offered suitable medication to manage the risk. Or there would most likely be an assessment by a physiotherapist or occupational therapist to provide clear instructions on moving and handling.
65. The IRP said the high level of need took account of Mr E’s presentation within this domain, including his immobility and the presence of spasms. He was supported with suitable aids and equipment, including a special wheelchair and slide sheets for repositioning and a full body hoist. The IRP also noted the reference to neuropathic pain.
66. Our adviser said the IRP’s decision in this domain is supported by the evidence available.
67. We can see the IRP engaged with the clinical adviser to explain the differences/ interpretation of the term ‘positioning is critical’ from the descriptor for a severe level of need.
68. There is evidence to suggest that Mr E had severe limb and trunk spasticity (stiffening or tightening of muscles due to his spinal injury). This was also getting worse (letter from the consultant at Royal National Hospital Stanmore – page 51 in the case file).
69. He needed a hoist plus two carers for all transfers, slides sheets and repositioning when in bed. He also experienced frequent muscle spasm and neuropathic pain, especially in his left side (page 64 in the case file). Therefore, we think the score of high is in line with the evidence.
70. We are satisfied there is no indication of a failing here as the rationale for the IRP’s decision in this domain is supported by the evidence available. It has acted in line with the National Framework.
Communication
71. Mr A disputes the IRP’s finding in the communication domain. He considers that his father’s needs were moderate.
72. The descriptor for moderate is:
‘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.
73. Mr A said Mr E only communicated face to face if left in a room and he could not call for help due to his paralysis. He was unable to gesture to show what he wanted to be done. His hearing was not great, his eyes clogged up and so he was visually impaired. He could not drink from a straw and project his voice. He called staff using the aid but they did not always arrive.
74. The IRP agreed with the CCG that Mr E had low needs in this domain.
75. The descriptor for low is:
‘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.’
76. The IRP said Mr E was wholly reliant upon verbal communication – face to face, because of mild hearing impairment. This was due to his physical limitations. He was described as capable of talking and explaining his thoughts, ideas and views. He could make his needs known and tell a carer when he needed help. It was acknowledged that Mr E’s non-verbal communication was effectively nil; for example he had a special monitor to call staff.
77. The IRP said this showed a low level of need, with staff having to provide a suitable approach to help Mr E to communicate effectively. The IRP found no evidence of difficulty in understanding Mr E’s communication or of him being unable to communicate reliably that would have suggested a moderate or high level of need.
78. Our adviser said the IRP’s decision in this domain is supported by the evidence available.
79. We can see Mr E had no difficulties in communicating his needs and wishes and he could use a puff and blow control to call staff when needed (page 64 in the case file). We acknowledge Mr A’s concern that staff did not always attend when Mr E called for them. The IRP had to base its decision on Mr E’s needs rather than the adequacy of the care. We can see the IRP acknowledged that Mr E had a hearing loss and needed glasses. Therefore, we think the score of low is in line with the evidence.
80. We are satisfied there is no indication of a failing here as the rationale for the IRP’s decision in this domain is supported by the evidence available. It has acted in line with the National Framework.
Psychological and emotional
81. Mr A disputes the IRP’s finding in the psychological and emotional domain. He considers that his father’s needs were high.
82. The descriptor for high is:
‘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.’
83. Mr A says Mr E did suffer some low mood and frustration with his limitations on occasion which would be expected, given his circumstances. He had periods of agitation and upset and it could take a long time for him to respond to reassurance.
84. The IRP agreed with the CCG that Mr E had low needs in this domain.
85. The descriptor for low is:
‘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, distraction and/or reassurance. OR Requires prompts to motivate self towards activity and to engage them in care planning, support, and/or daily activities.’
86. The IRP said Mr E had occasions when he felt in a low mood or depressed; he could be tearful or emotional at times. There were no indications that Mr E’s psychological or emotional needs were having adverse consequences for his wider welfare. He was not suffering disturbed sleep, or loss of appetite, for example. The low level of need reflected the times of low mood or tearfulness, and the help from comfort and reassurance.
87. Our adviser said the IRP’s decision in this domain is not supported by the evidence available.
88. We can see Mr E experienced periods of anxiety, low mood and often expressed the wish that he was at home. He was anxious that he should be caring for his wife and this would lead to frustration.
89. He took a long time to respond to reassurance and talk about his feelings and worries. He needed a psychological assessment on 30 November 2017 and then received 12 sessions of one to one counselling which ended on 26 February 2018. At the end of the sessions, he was assessed as being at low to mild risk of depression and anxiety. He was better able to talk with others when needed. We can see it is noted that Mr E could experience hallucinations and disorders of thought when he had an infection (pages 64, 96 and 447-449 in the case file).
90. Therefore, we feel there is an indication of a failing here as the rationale for the IRP’s decision in this domain is not supported by the evidence available. It appears Mr E’s needs were not just at the level set out in the low descriptor. It has not acted in line with the National Framework.
Drugs and medication
91. Mr A disputes the IRP’s finding in the drugs and medication domain. He considers that his father’s needs were severe.
92. The descriptor for severe is:
‘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.’
93. Mr A says Mr E was allergic to Butrans patches and co-codamol. The patches would have been the prescribed treatment for the neuropathic pain he was suffering, had he not had this allergy. He scored his pain levels during the night at eight out of ten. He was prescribed paracetamol, tizanidine and baclofen to address his pain and muscle spasms.
94. The IRP agreed with the CCG that Mr E had moderate needs in this domain.
95. The descriptor for moderate is:
‘Requires the administration of medication (by a registered nurse, carer or care worker) due to: 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.’
96. At the time of the assessment the IRP said Mr E was described as compliant with the administration of his medication regime. He was prescribed wide-ranging regular medication. There was only one ‘as needed’ (PRN) medication – liquid peppermint. No rescue medications were prescribed. The DST incorrectly referred to a Butrans patch as Mr E was actually allergic to this.
97. The IRP said he suffered neuropathic pain, and was prescribed baclofen for his spasms, and tizanidine for back pain. Mr E reported that pain was more of a problem at night. There did not appear to have been any significant problems of pain during moving and transfers. There was no evidence of pain causing adverse consequences for his wider welfare.
98. It said on balance, allowing for the prescribed medications, monitoring and administration, and moderate pain, which was known about, Mr E had a moderate level of need. The medication regime was not problematic to manage and was overseen by the duty nurse and care staff.
99. Our adviser said the IRP’s decision in this domain is not supported by the evidence available.
100. We can see there is evidence to suggest that Mr E experienced ‘excruciating pain’ on occasion. The SIA advocate stated that he experienced episodes of neuropathic pain. The advocate also stated that pain medications could lead to episodes of constipation (pages 64 and 138 in the case file).
101. We can see Mr E, as a tetraplegic, was at risk of postural hypotension (sudden low blood pressure when standing up) and episodes of ADR. Whilst there is no evidence that he did experience these attacks, they are conditions that those caring for an individual must be aware of as they can happen at any time. ADR is a life-threatening condition that can lead to catastrophic stroke and even death.
102. We can see Mr E needed monitoring for aspiration, chest infection, UTI and also experienced a small bowel obstruction.
103. Therefore, we think there is an indication of a failing here as the rationale for the IRP’s decision in this domain is not supported by the evidence available. It appears Mr E’s needs were not just at the level set out in the moderate descriptor. It has not acted in line with the National Framework.
Altered states of consciousness
104. Mr A disputes the IRP’s finding in the altered states of consciousness domain. He considers that his father’s needs were high.
105. The descriptor for high is:
‘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.’
106. Mr A referred to broken sleep because Mr E had spasms which could wake him up in the night. He did not know what caused it. There was the potential for him to fall out of the bed or chair. The IRP’s clinical adviser said there was no mention in the records or GP notes about postural hypertension.
107. The IRP agreed with the CCG that Mr E had no needs in this domain.
108. The descriptor for no needs is:
‘No evidence of altered states of consciousness (ASC).’
109. The IRP said Mr A had argued that Mr E suffered from postural hypotension, requiring carers to take suitable care when he was being moved from a lying to a sitting position. This was acknowledged in the mobility domain and was allowed for in the other significant care needs domain. It said this is not an ASC episode in terms of history or frequency in this care domain. Staff needed to be aware of the risk and act accordingly. Thus, the IRP agreed there were no ASC episodes or similar to be accounted for in this domain.
110. Our adviser said the IRP’s decision in this domain is not supported by the evidence available.
111. Whilst there is no evidence to suggest that Mr A experienced frequent episodes of altered states of consciousness, as a tetraplegic, he was at risk of postural hypotension and episodes and ADR.
112. As mentioned above, whilst there is no evidence to show that he did experience these attacks during the period the IRP considered, they are conditions that those caring for an individual must be aware of as they can occur at any time. ADR is a life-threatening condition that can lead to catastrophic stroke and even death. We cannot see the IRP considered the risks and the skills needed to recognise the two conditions.
113. There is no evidence to support a weighting of high needs in this domain, as Mr A thinks. For a high weighting we would expect to see actual episodes of ASC during the period and there is no evidence that was the case for Mr E. But we feel there is an indication of a failing as the rationale for the IRP’s decision in this domain is not supported by the evidence available. It appears Mr E’s needs were not just at the level set out in the no needs descriptor. It has not acted in line with the National Framework.
Other significant care needs
114. Mr A disputes the IRP’s finding in the other significant care needs domain. He considers that his father’s needs were severe.
115. Mr A says the SIA report goes into detail, particularly in relation to ADR. This condition, if not well managed, is potentially life threatening. It is an example of a 'well managed need' and staff monitoring was critical in maintaining Mr E’s condition effectively so that any change which potentially could be related to ADR and tetraplegia could be addressed immediately, had they happened.
116. The IRP agreed with the CCG that Mr E had moderate needs in this domain.
117. There is no descriptor in this domain.
118. The IRP said whilst the risk of ADR needed monitoring, no actual episodes were recorded, and Mr E did not have skilled input or response. The conditions were known about, and staff needed to be aware and suitably monitor him. So, Mr E’ presentation could be judged as stable and non-problematic to deal with in practice. There was no need for 24-hour observation or monitoring, for example. A suitable care plan was drawn up by the care home. Such a description, and the standard care arrangements in response, were considered as consistent with a moderate level of need for this domain.
119. Our adviser said the IRP’s decision in this domain is supported by the evidence available.
120. The IRP uses this domain to describe the problems associated with tetraplegia (ADR and postural hypotension). It did this accurately – its explanation is in line with the evidence of Mr E’s needs.
121. We are satisfied there is no indication of a failing here as the rationale for the IRP’s decision in this domain is supported by the evidence available. It has acted in line with the National Framework.
Eligibility criteria
Nature
122. Mr A disputes how the IRP considered the nature indicator, which was used to determine whether his father’s needs were primarily for health.
123. Mr A says the IRP report did not accurately reflect Mr E’s needs in relation to mobility and medication. It appeared to minimise/normalise a significant area of care.
124. The IRP said Mr E needed to be in a safe and contained environment due to his physical limitations, supported by a care regime which could prompt, anticipate, and help with his needs. Mr E was compliant with his medication regime. The care provision involved the monitoring and management of his ongoing needs. This included positioning and transfers and the administration of his medication. Mr E needed monitoring and supervision relating to his condition, for example ADR and poikilothermia (inability to regulate core body temperature).
125. Due to his inability to care physically for himself, the IRP said Mr E needed arrangements to meet his health, social, personal care, domestic needs and maintain his safety. This was with access to support from the GP and community health professionals as appropriate.
126. The IRP concluded that Mr E had a range of social care and health care needs. He needed to be looked after in a suitable environment where planned and routine attention was available to ensure all his needs were met over a 24-hour period. This ensured all his activities of daily living were addressed effectively and appropriate arrangements were in place to minimise any risks to his physical and mental well-being.
127. The IRP said Mr E’s needs were not of a nature beyond which social services could be expected to provide and he did not have a primary health need. His main requirements were for routine and planned support and help with the activities of daily living. All his care needs were known, and could be anticipated, and were of a straightforward nature. They could be resolved with the planned interventions and appropriate assistance available through his nursing home placement. The IRP decided that the nature of Mr E’s care needs did not show that he had a primary health need.
128. Our adviser said the clinical evidence does not support the IRP’s rationale for the nature indicator.
129. When the IRP considers the nature indicator, in line with the National Framework we would expect it to ‘describe the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them’.
130. We can see Mr E’s care needs are described. However, the IRP only made a brief mention of ADR. It did not consider that whilst Mr E had not experienced an episode of this, it is a condition that patients with a spinal cord injury and their carers need to be continually aware of and must be trained in how to deal with as it can be life threatening. There is evidence supplied by the SIA describing this in detail and was again discussed at the IRP meeting. This condition can occur suddenly even though the individual may have never experienced it.
131. We can see Mr E also needed correct positioning for meals and drinks to minimise the risk of aspiration and chest infection, monitoring for UTI and constipation. He needed hospitalisation for a small bowel obstruction and urosepsis.
132. Therefore, we feel the IRP’s rationale for the IRP’s decision does not fully capture the nature of Mr E’s needs set out in the available evidence. We can see it has not acted in line with the National Framework. There is an indication of failing in how the IRP considered the nature of his needs.
Intensity
133. Mr A disputes how the IRP considered the intensity indicator, which was used to determine whether his father’s needs were primarily for health.
134. Mr A says the IRP report appears to suggest that as the care home was appropriately registered and staffed, and staff did not need to have specific training or hold specific qualifications, this was evidence that Mr E did not have any intensity of need. Mr A disagrees with this. He says there was an intensity of need, particularly around mobility and breathing as positioning was critical for both elements of care. He needed more time and attention to detail than perhaps other residents did.
135. The IRP said Mr E’s needs could be addressed straightforwardly by the care arrangements in place at the nursing home. There was no challenging behaviour evident during the period reviewed. No community health services were involved at the time of the assessment, other than SALT and counselling and both services had discharged Mr E by the end of February 2018. The GP was not being involved beyond what would be expected given Mr E’s medical history. Personal care was being delivered in the main by care staff.
136. The monitoring for signs of ADR or poikilothermia was another form of standard care within such provision, as was the assistance with the administration of Mr E’s non-complex medication regime. There were no care interventions that were taking an excessive time to complete, except for mealtimes as described.
137. The IRP said Mr E’s needs could be anticipated, planned for and met through the care plans and associated arrangements at the care home. Therefore, the IRP said it did not demonstrate intensity associated with a primary health need.
138. Our adviser said the clinical evidence does not support the IRP’s rationale for the intensity indicator.
139. 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’)’.
140. We can see the intensity of Mr E’s care needs is described well, however, as mentioned above the IRP only made a brief mention of ADR.
141. The IRP considered that the care needed was delivered within standard care procedures that were planned and routine. There is evidence to suggest that carers needed to have enhanced skills to carry out manual evacuation of the bowel and to monitor for the signs of UTI, ADR and postural hypotension. This would indicate that specialist training and knowledge was needed to meet Mr E’s specific care needs.
142. Therefore, we feel the rationale for the IRP’s decision about the intensity of Mr E’s needs is not supported by the evidence available. We can see it has not acted in line with the National Framework. There is an indication of failing in how the IRP considered the intensity of his needs.
Complexity
143. Mr A disputes how the IRP considered the complexity indicator, which was used to determine whether his father’s needs were primarily for health.
144. Mr A says there were clear interactions between domains which staff needed to be mindful of. He says it was established within the documents reviewed and acknowledged by the IRP that some aspects of Mr E’s care were not effectively managed, particularly his bowel management. This shows a complexity of care.
145. Mr A says the IRP did not fully consider ADR could have resulted in rapid deterioration and even death.
146. The IRP said there was no increase in the level of skills, knowledge, or staff time needed to meet Mr E’s needs as a result of any interplay between his areas of need. From the care plans drawn up, his overall needs were not demonstrated to be difficult to plan and provide for. Therefore, it was reasonable to conclude they were not over and above the expectations of care delivery in a nursing home. Any interaction did not appear to have increased by any particular degree the type and level of care Mr E needed.
147. The IRP said there was the potential for some interplay between Mr E’s health care needs but the resulting implications for his care were not complex or complicated. The IRP concluded that the needs arising from these interactions did not need enhanced skills or knowledge to address them and these did not indicate complexity of needs associated with a primary health need.
148. Our adviser said the clinical evidence does not support the IRP’s rationale for the complexity indicator.
149. When the IRP considers the complexity indicator, in line with the National Framework we would expect it to look at ‘how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interactions between two or more conditions. It may also include situations where an individual's response to their own condition has an impact on their overall needs, such as when a physical health need results in the individual developing a mental health need’.
150. We can see the IRP considered the complexity of Mr E’s care needs. However, the IRP relied on the fact that Mr E’s condition was stable, and his needs were managed well. It did not consider the additional complications that can occur at any time for an individual with a spinal cord injury.
151. The SIA supplied the IRP with information to consider including the conditions that can lead to life threatening episodes in this group of individuals.
152. Therefore, we feel the rationale for the IRP’s decision about the complexity of Mr E’s needs is not supported by the evidence available. We can see it has not acted in line with the National Framework. There is an indication of failing in how the IRP considered the complexity of his needs.
Unpredictability
153. Mr A disputes how the IRP considered the unpredictability indicator, which was used to determine whether his father’s needs were primarily for health.
154. Mr A says there was potential for rapid deterioration in Mr E’s presentation, particularly in relation to breathing and ADR. He said Mr E’s incontinence could not be predicted.
155. The IRP said Mr E’s care needs presented as stable on a day-to-day basis, following a predictable course as indicated by the planned care arrangements. Staff would know about his particular needs, for example that he needed regular planned measures to manage his double incontinence and catheter care. His needs needed anticipation and planned routines with monitoring and intervention as appropriate.
156. The IRP said there was no daily unpredictability about Mr E’s wellbeing. There were no significant or exceptional challenges in delivering his care, as shown by the lack of complexity and intensity in his presentation. The IRP concluded that there was not a level of unpredictability associated with a primary health need.
157. Our adviser said the clinical evidence does not support the IRP’s rationale for the unpredictability indicator.
158. When the IRP considers the unpredictability indicator, we would expect it to look at: ‘the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the individual’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’.
159. We can see the IRP described the unpredictability of Mr E’s care needs. But again, the IRP only made a brief mention of ADR. It did not consider that whilst he had not experienced an episode of this, it is a condition that patients with a spinal cord injury and their carers need to be continually aware of and must be trained in how to deal with as it can be life threatening.
160. Therefore, we feel the rationale for the IRP’s decision about the unpredictability of Mr E’s needs is not supported by the evidence available. We can see it has not acted in line with the National Framework. There is an indication of failing in how the IRP considered the unpredictability of his needs.
Well managed needs principle
161. Mr A says the IRP report was dismissive and minimised Mr E’s needs in a number of key areas.
162. The IRP disagreed and said it was satisfied that the CCG did not in general misapply the ‘well-managed need’ principle in its assessment.
163. Paragraph 188 in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care Contribution October 2018 (Revised) states:
‘When undertaking NHS Continuing Healthcare reviews, care must be taken not to misinterpret a situation where the individual’s care needs are being well managed as being a reduction in their actual day-to-day care needs. This may be particularly relevant where the individual has a progressive illness or condition, although it is recognised that with some progressive conditions care needs can reduce over time.’
164. We can see the IRP considered all the available evidence and had a discussion which included the family’s comments and submissions. However, the IRP tended to rely on the fact that Mr E was, overall, stable during the review period. It did not appear to place weight on the conditions that can suddenly arise for an individual with tetraplegia. It did not appear to have considered the advice given by the SIA. It relied on the apparent ‘routine nursing’ of Mr E and did not consider that carers needed enhanced skills to deliver his care (manual evacuation, positioning to avoid aspiration when eating and drinking, and signs, symptoms and treatment of ADR).
165. Therefore, we feel the IRP’s application of the well managed need principle was not supported by the evidence available and in line with the National Framework.
Conclusion
166. We do not think the IRP has robustly considered the evidence presented in the breathing, nutrition, continence, psychological and emotional, drugs and medication, altered states of consciousness domains, or in the four key indicators and well managed needs principle. We think this means Mr E has not yet had a robust consideration of his claim by NHSE.
167. Our Principles for Remedy, ‘Getting it right’, say that public bodies should acknowledge when things have gone wrong and put things right.
168. We asked NHSE’s CHC Regional Lead (London) if it would be willing to reconsider this case. The regional lead has reviewed our comments and said she has discussed with the original chair and agreed to look at this again, as it is important Mr E gets a fair process. The regional lead prefers that the case is reviewed by a different chair and panel to add an additional level of independence. Any lessons learned will be shared.
169. The new chair is away until the beginning of June. NHS England proposes to do this as a desk top exercise unless the new chair wants the benefit of Mr A’s representation in person rather than from submissions or notes of last meeting. The regional lead will write to Mr A early June once she knows the next steps.
170. We are satisfied this is enough to put things right in line with our Principles. It will ensure NHSE properly considers all the evidence. We think this resolves the matter and there is nothing more we could achieve if we investigated the complaint.
171. If Mr A remains unhappy with NHSE’s review outcome, he can come back to us to complain about its new decision. He would need to do so within 12 months of when he gets that outcome, in line with our time limit.