16. We cannot question discretionary decisions, including decisions about eligibility for NHS continuing healthcare funding, unless we find a fault in the way the organisation reached its decision. The IRP’s decision is discretionary and the fact someone else had a different opinion does not mean there must have been a fault in the decision making progress.
Behaviour
17. The CCG weighted this domain as high. Mrs E disagreed and told the IRP it should have weighted this domain as severe. The IRP agreed with the CCG and weighted this domain high.
18. The descriptor for high needs says:
‘‘Challenging’ behaviour of type and/or frequency 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.’
19. Mrs E says the IRP did not take the local authority’s view into account. She says the local authority agreed A’s needs were severe.
20. She says the IRP’s weighting relied on a traffic light system used to manage A’s behaviour. Mrs E told us to her knowledge this system was never used, and A did not understand it.
21. Mrs E says the IRP only identified reports of difficult behaviour between June and August 2016, but they happened daily. She says the IRP did not examined a reliable cross section of her son’s behavioural data.
22. Finally, Mrs E disputes A was a predictable risk. She says the behaviour reports show A’s behaviour was unpredictable.
23. The descriptor for severe needs says:
‘‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.’
24. The IRP’s report reflects the views of Mrs E, the local authority, and the CCG. It clearly highlights the different positions and it explains it looked carefully at the evidence to reach its view. This shows it understood they had quite different views.
25. We would expect the IRP to take all views into account. The National Framework says decisions should be based the level and type of an individual’s overall actual day to day care needs taken in their totality. By considering all views but basing its decision on the evidence, the IRP has acted in line with the guidance.
26. The IRP’s refers to a traffic light system (red, amber, green categorisation) used to manage A’s behaviour.
27. When we looked at the records, we saw several charts with a traffic light system. The charts set out which behaviours fell into which category and directed staff on how to respond. The traffic light charts were written by A’s therapy team and appear to have been used by his carers.
28. We have not identified any information that suggests the IRP’s decision was based on A’s understanding of this system. We think it was relevant for the IRP to refer to the system as it gives a clear description of the type of behaviour A was likely to display and the skills needed to meet his needs.
29. When the CCG completed the DST in September 2016, it looked at available information from the preceding three months.
30. The National Framework says the DST is designed to gather a picture of a person’s needs at that time. It is also clear an organisation should not assess an individual until their needs are as stable as they can be. The National Framework says proportionate information should be gathered for a DST.
31. We can appreciate why Mrs E felt the IRP only considered a small period. She says A’s health needs remained consistent for several years and it took around three years for the case to reach the IRP hearing. We understand many more records of his needs will have been captured in this time.
32. The IRP’s role is to review the decision made by the CCG using the evidence it gathered at the DST. The records show in this case the CCG looked at additional records in the local resolution stage. These records were also available for the IRP.
33. The IRP has considered the evidence from the period under review and alongside the additional evidence the CCG viewed at local resolution stage. This is in line with its role as set out in guidance.
34. Mrs E says A’s behaviour needs were a daily occurrence, but they were not predictable. She says an individual could not know when his mood would change, and his behaviour needs increase.
35. The IRP acknowledged it was not known exactly when A’s behaviour needs may occur. It identified that when A’s behaviour became challenging, the needs this created were predictable. This means staff knew how to respond to him to manage his behaviour and keep him safe.
36. The IRP said the behaviours happened frequently but not every day. The records show evidence of challenging behaviour on almost every day. There are some daily record sheets missing and the quality of some of the records make them illegible.
37. The available daily records often have ‘N/A’ circled at the bottom of the page next to ‘challenging behaviour recorded’ (there is also an option to circle ‘Y’ or ‘N’). The traffic light charts contain an escalation plan. It gives examples of when behaviour might increase. This shows A’s behaviour changes could be sudden and frequent.
38. Overall, we think the IRP’s account is supported by the available records.
39. The significant differences between the two weightings is the level of risk the individual’s behaviour poses to them and others. Alongside the need for a skilled response that might be outside of planned interventions.
40. We could not support Mrs E’s accounts with the available records. But, we have no reason to question A showed challenging behaviour on a daily basis. We do think it is material if the behaviour occurred daily as Mrs E says, or frequently as the IRP said and the records reflect, as this is not a key difference in the weightings.
41. Looking at the IRP’s consideration of this domain we can see it has acted in line with the National Framework. We have found no failings on this part of the complaint.
Psychological and emotional
42. The CCG weighted this domain as low. Mrs E disagreed and told the IRP it should have weighted this domain as high. The IRP agreed with the low weighting.
43. The descriptor for low needs says:
‘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.
44. Mrs E says as with the behaviour domain, the IRP did not consider an adequate cross section of the daily notes. She says it only looked at three dates across a relatively small span.
45. Mrs E also says A does not use an iPad as it too small to keep his attention.
46. Finally, Mrs E says A’s anxiety and distress massively impacted his health and wellbeing and they resulted in A rocking violently in his wheelchair. She says he broke three wheelchairs. Mrs E also says A can get very upset and cry. This happened frequently for no apparent reason.
47. The descriptor for high needs says:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being.
OR Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities.’
48. The IRP’s summary of A’s needs in this domain specifically quote records from 4 August, 6 August, 1 September and 13 to 17 September 2016. These quotes are in line with the records the CCG reviewed.
49. As we set about in the behaviour domain, we think the IRP considered the correct records in line with the National Framework.
50. The daily records show multiple occasions where staff helped A to use his computer or to listen to music. They do not mention an iPad.
51. In this domain the IRP was looking at how A’s mood was and if it stopped him engaging in activities. The records show with help from staff A engaged in watching videos and listening to music. We do not think the type of computer he used was material to the IRP’s consideration.
52. The IRP’s report says A was diagnosed with anxiety and he took regular medication. It found the records showed there were times when A became upset, but also periods when he was happy. We could not identify any records that show a severe impact on his health and or wellbeing. We think the IRP’s summary reflects the records.
53. The IRP’s consideration of A’s behaviour captured that he rocked in his wheelchair. The notes in the annex (the part of the report that provides a summary of the discussions that took place at the hearing) show Mrs E told the IRP he had broken his wheelchairs when he became violent without reason. The CCG told the IRP on one occasion A had rocked himself out of his wheelchair.
54. The IRP did not comment on how A’s distress in his wheelchair effected his health and wellbeing.
55. The behaviour charts show A rocked in his wheelchair, as well in his bed and in other transport. They also show A’s rocking was often accompanied by shouting. The charts identified the risk of A disturbing others with his behaviour.
56. A document outlining A’s morning routine, highlighted how to strap him into his wheelchair to account for any rocking. The document said A can rock when he is excited or distressed. The behaviour charts show rocking was effectively managed by distraction. This is in line with the low domain weighting.
57. We did not identify any evidence that showed the rocking had a severe impact on A’s health and wellbeing, although it could cause distress, there was no evidence this was severe.
58. We have seen no evidence the IRP’s consideration was not in line with the National Framework. We have found no failings in this part of the complaint.
Mobility
59. The CCG weighted this domain as moderate. Mrs E disagreed and told the IRP it should have weighted this domain as high. The IRP agreed with the CCG and weighted this domain moderate.
60. The descriptor for moderate needs says:
‘Not able to consistently weight bear.
OR Completely unable to weight bear but can assist or cooperate with transfers and/or repositioning.
OR In one position (bed or chair) for the majority of time but is able to cooperate and assist carers or care workers.
OR At moderate risk of falls (as evidenced in a falls history or risk assessment)’
61. Mrs E says the IRP report wrongly says A used an attendant propelled wheelchair. She also says he has never used a walking frame in the period under review. Mrs E says A could not weight bear unattended and any transfers took a minimum of two people.
62. Mrs E says A needed careful positioning on transfer due to the possibility of him harming himself or others. She says he did not fall because two people helped him at all times.
63. Mrs E says A was awarded disability living allowance (DLA) for life and she feels this shows he did not have moderate mobility needs.
64. The descriptor for high needs says:
‘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.’
65. The annex shows Mrs E told the IRP her son had never used a manual wheelchair. The CCG said an intervention plan from August 2016 stated a manual chair was used. The CCG apologised if this was incorrect. The annex suggests the CCG accepted Mrs E’s views.
66. We have seen no evidence that suggests the IRP’s consideration was negatively influenced by the reference to a manual chair. There was also reference to the electric chair and a clear explanation that A could not operate any wheelchair.
67. We have not seen any evidence A used a walking frame in the period under review. Although the IRP report accurately reflects this, it was clearly confusing for Mrs E to see it mention that he did not use a walking frame.
68. The IRP acknowledged A was reliant on support from staff. It reflected Mrs E’s view that he needed three carers on occasion. The IRP says he needed staff for transfers.
69. We do not think it is material that this may have been more than two carers on occasion. Neither weighting is dependant the number of people needed to support a transfer or reposition.
70. The IRP acknowledged A moved himself to the floor at times and this presented a risk of falls. Mrs E says he did not fall because two staff supported him at all times.
71. The IRP decided there was no history of recent falls and A presented a moderate risk. This is in line with the domain description which says it is appropriate to use the history of falls to base your assessments on.
72. Mrs E says A’s DLA award showed he does not have moderate mobility.
73. The government website says DLA (soon to be replaced by personal independence payments) can help you with some of the extra costs if you have a long term physical or mental health condition or disability.
74. The National Framework is clear that eligibility for CHC funding is not based on a condition or a disability it is about the needs arising from it. We would not expect to see the IRP base any decision for CHC eligibility on DLA entitlement. It alone does not give a clear picture of the types and level of an individual’s mobility needs.
75. Looking at the IRP’s consideration of this domain we can see it has acted in line with the National Framework. We have found no failings in this part of the complaint.
Nutrition
76. The CCG weighted this domain as low. Mrs E disagreed and told the IRP it should have weighted this domain as high. The IRP agreed with the CCG and weighted this domain low.
77. The descriptor for low needs says:
‘Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).
OR Able to take food and drink by mouth but requires additional/supplementary feeding.’
78. Mrs E says at the point of assessment A was incapable of preparing any food or drink for himself without support. She says he hand grabbed food and overloaded his mouth, even when using a specialist spoon he overloaded too much.
79. Mrs E says A had no comprehension of overload and he often choked. He needed constant supervision at mealtimes to avoid choking. Mrs E agreed he did not have dysphagia (a condition which causes someone to have difficulty swallowing), but A could not understand the risks of choking.
80. The descriptor for high needs says:
‘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.’
81. The high weighting references a need to monitor the risk of choking in specific relation to dysphagia. It is different from the situation Mrs E describes which would result in A choking for another reason.
82. The IRP report shows it captured Mrs E’s comments and it agreed the records supported her claim A could overload his mouth and put himself at risk of choking.
83. We appreciate the National Framework can be narrow in certain domain weightings. The IRP highlights none of the other factors that would categorise an individual’s needs as high applied to A’s nutritional needs. His need was in preparation and supervision.
84. Looking at the IRP’s consideration of this domain we can see it has carefully considered A’s needs against the weighting. There is no dispute over his needs and the IRP has shown why it applied the correct weighting in line with the National Framework. We have found no failings in this part of the complaint.
Skin
85. The CCG weighted this domain as moderate. Mrs E disagreed and told the IRP it should have weighted this domain as high. The IRP agreed with the CCG’s weighting of moderate.
86. The descriptor for moderate needs says:
‘Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.
OR Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.
OR An identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment.’
87. Mrs E says A used pressure relieving equipment, he has a pressure cushion in his wheelchair and a specialist mattress on a specialist bed.
88. She told us he is doubly incontinent and could not explain if he needed changing. This meant staff had to constantly monitor his skin. His skin was prone to tears and cuts. Mrs E says A crawled or shuffled on his bottom when he was not in wheelchair.
89. The descriptor for high needs says:
‘Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is not responding to treatment OR Pressure damage or open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’, which is/are responding to treatment.
OR Specialist dressing regime in place; responding to treatment.’
90. The annex shows the IRP asked about A’s mattress. Mrs E said he had just received a new bed as he had broken his previous bed. The IRP says A did not need any pressure relieving equipment such as a mattress. It did not specifically comment on pressure cushions.
91. We do not dispute Mrs E’s account. We could not identify any information that suggested A used a pressure cushion or a special mattress. The IRP’s comment is reflective of the records.
92. Neither domain weighting is dependent on the use of pressure relieving equipment. We do not think the IRP’s failure to reflect Mrs E’s comments shows a failure in its consideration. We can understand why it made Mrs E concerned the IRP had not considered all her evidence.
93. Aside from the pressure relieving equipment Mrs E and the IRP agreed on A’s needs in this area.
94. The main difference between the weightings is an individual’s response to treatment of skin wounds or the need for a specialist dressing routine. Although Mrs E said A’s skin was prone to tearing, she did not suggest it did not heal and respond to treatment.
95. The IRP reflected the number of skin tears but also found preventative intervention (creaming) minimised the risks of this happening. It says creaming happened several times a day.
96. The IRP’s view is supported by the records. We have not identified any evidence in the records or in Mrs E’s representations that suggests A’s wounds did not heal or he needed a specialist dressing routine.
97. Looking at the IRP’s consideration of this domain we can see its weighting is in line with the available evidence. We think it has acted in line with the National Framework. We have found no failings on this part of the complaint.
Drug therapies and medication
98. The CCG weighted this domain as low. Mrs E disagreed and told the IRP it should have weighted this domain as high. The IRP increased the weighting to moderate.
99. The descriptor for moderate needs says:
‘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.’
100. Mrs E says A is compliant with taking medication as he thinks it is food. But he could not self administer as he did not understand what he was taking or why. She also says he could not physically open a packet of tablets or a bottle.
101. Mrs E also says the IRP wrongly said A last had a seizure in 2010, it was 2016.
102. The descriptor for high needs says:
‘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.’
103. The IRP reflected A needed his medication administering and it accurately captured the medication listed in A’s medical records. It did not specifically comment on A’s understanding of his medication needs.
104. The key difference between the two weightings is the need for the individual to be monitored for adverse reactions and fluctuating medication needs. We have not seen any evidence in the records that suggest A needed this level of careful monitoring.
105. GP records show A’s last seizure was on 22 December 2015. His GP reviewed his medication needs on 3 August 2016, no changes are noted. The IRP was wrong to say A’s last seizure was in June 2010. It also referred to his last seizure happening in 2010 elsewhere in the report.
106. The annex shows the IRP was aware of the correct date. But, as there is more than one occasion in the report where the IRP got the date wrong, it is possible it was not always considering the correct date.
107. A’s medical records show his most recent seizure did not result in any change to his medication or monitoring. The IRP correctly says there was no rescue medication and the records support this comment. The IRP’s comments show it was considering the current medication records.
108. Taking everything into consideration, we do not think the date of A’s last seizure was significant to the weighting of this domain. This means the fact the IRP got the date wrong is not evidence its decision is wrong.
109. Based on the evidence we have seen; we think the IRP’s rationale is clear enough for us to say its consideration is in line with the evidence and the National Framework. We found no failings in this part of the complaint.
Key indicators:
110. When considering the four key indicators, we would expect to see the IRP held a clinically led discussion of the key clinical facts concerning the individual’s needs. The IRP’s discussion and consideration of the relationship and impact of any needs should be clear in its report.
111. Mrs E disputes the IRP’s conclusions about the nature, intensity, complexity and unpredictability of A’s needs.
Nature
112. In the IRP’s review of the nature of A’s needs we would expect to see consideration of:
‘the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.’
113. Mrs E says the IRP wrongly suggests A only needed the majority of his needs anticipating. She says he needed all his needs anticipating and he could not communicate.
114. The IRP says A needed most of his daily living and personal care needs to be anticipated and meet because of his severe cognitive needs. It stopped short at saying this applied to everything because it said he could communicate some choices.
115. In a CHC assessment the DST says communication relates to expression and understanding. The care plans show A could make choices about things such as what to wear, what to eat and what activities to do. The care plan says a choice should be offered to him.
116. Daily records and behavioural charts also show staff offered A choices and they could determine what he had chosen. The records suggest A could express a view. We think this expression would be considered a form of communication in line with the DST.
117. The IRP also acknowledged A’s lack of cognition. It identified this made his communication unreliable. We have not seen any evidence the IRP’s comment is not reflective of the records it viewed.
118. Mrs E also says the IRP wrongly discussed how he used an iPad. As we addressed under the psychological and emotional needs domain, we do not think it is material what computer A used. The evidence suggests he was being supported in using a computer.
119. Mrs E says the IRP contradicted itself by acknowledging A choked in this section of its report. She says if it accepted he choked on his food it should have weighted the nutrition domain high.
120. As explained in the domain considerations, the high weighting relates to choking caused by dysphagia. Mrs E agrees A did not have dysphagia. The records show A needed increased monitoring when he was eating. The IRP correctly referenced the record when summarising the nature of A’s needs.
121. Mrs E says the summary is contradictory as it says A did not have a primary health need but then says he had health needs.
122. Health needs are any needs that would benefit from the input of a health professional. These might be needs a doctor could prescribe a medicine to help with. Or more serious needs that want ongoing intervention from a specialist clinician in a hospital setting.
123. The NHS says some health needs are more complex and long term. These are the sorts of needs that may show a primary health need is present, when an individual is assessed for CHC funding.
124. It also says social service support covers activities such as washing, dressing, taking medicines and going to the toilet. It says additional nursing support can cover a complex medical condition. All these provisions are provided via the local authority social services. If your needs are more than this, the NHS says you may be entitled to CHC funding.
125. This means it possible for an individual to need intensive support in everyday activities alongside having a range of health needs. But the health needs may not be of a nature to be considered a primary health need.
126. We can see the IRP has reflected the nature of A’s condition as Mrs E described and as reflected in the records. Overall, we think the IRP’s consideration shows it has considered the quality and characteristics of the needs Mrs E highlighted. The IRP’s consideration is supported by the evidence available to it.
127. We think the IRP made its decision in line with the National Framework. We found no failings in this part of the complaint.
Intensity
128. In the IRP’s consideration of intensity we would expect to see an analysis of:
‘both the extent (‘quantity’) and severity (degree) of the needs and the support required to meet them, including the need for sustained/ongoing care (‘continuity’)’
129. Mrs E says the intensity indicator is inaccurate because it does not reflect A has two to one or three to one care as a minimum, 24 hours a day.
130. She says the report does not reflect staff stopped recording challenging behaviour as there was too much. Nor does it reflect staff tailored care to meet his needs. She says although A’s behaviour looks routine on paper it was carefully tailored to manage his behaviour.
131. The records show A often needed two to one carers when completing daily activities and three to one carers on occasion. The activity charts show occasions when careers could meet A’s needs with one to one support, but this was usually only when he was in bed.
132. The behaviour and activity charts show A had a structured routine, with variation, designed to keep his engagement and manage his behaviour. The IRP’s summary shows it was aware of the quantity of A’s needs but the need for two to one care was predominately to manage his safety and the safety of others.
133. NHSE’s practice guidance notes say the IRP should consider the following questions when looking at the intensity of needs:
• How often is each intervention required?
• For how long is each intervention required?’
134. The IRP’s report shows it had a good understanding of A’s needs as represented in the records and as described by Mrs E. The IRP has shown it considered the number of needs and the support needed to meet them. It found they were routine and did not change from day to day and week to week.
135. Mrs E also says the IRP marginalised A’s needs as it did not recognise good skin care was keeping his skin intact. Mrs E stressed A could not tell staff when he needed his pad changing, they had to anticipate this.
136. The IRP did not look in detail at what was needed to maintain A’s skin, it addressed this in a general consideration of his daily needs. It identified the number of carers needed to meet this need.
137. The IRP looked separately at if the interaction between A’s mobility, incontinence and skin care caused an intensity of need. It found A’s skin care was not made more intense because of these factors.
138. As addressed in the skin domain, the records show A’s skin care needs were met with regular creaming. Although he did experience some skin tears, we have not seen any evidence they needed specialist dressing or treatment.
139. Paragraphs 142 to 146 of the National Framework give a detailed example of how to consider well managed needs. It explains if a need is met by providing intervention such as medication, the need and the type and frequency of intervention should be accurately documented in the appropriate domains.
140. The IRP has showed it asked the sort of questions the guidance suggests it should and it considered the National Framework when reaching its conclusions. We have not identified any evidence that suggests the IRP marginalised this need.
141. We think the IRP’s consideration is in line with the National Framework. We found no failings in this part of the complaint.
Complexity
142. In the IRP’s consideration of complexity, we would expect to see an analysis of:
‘how the needs present and interact to increase the skill needed to monitor the symptoms, treat the condition(s) and/or manage the care. This can arise with a single condition or can also include the presence of multiple conditions or the interactions between two or more conditions.’
143. When looking at the complexity of an individual’s needs NHSE’s practice guidance notes say the IRP should consider questions like:
• 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)?
144. Mrs E says the complexity indicator is inaccurate because A could not communicate at all. She also says the IRP incorrectly said A’s aggression was occasional. Mrs E says it was frequent.
145. The record show A could express a view on what he might like to wear. There is no dispute he needed all his needs anticipating and his answers could not be relied upon.
146. We cannot criticise the IRP’s comment, as we think the records show A could communicate on an extremely basic level in a very limited way. This is still communication as defined in the National Framework.
147. When referring to A’s behaviour the IRP has used the expression ‘on occasion’. We think there was an opportunity for it use a better description of the what the records reflect. This could have been ‘frequently’ as Mrs E suggests.
148. In its consideration the IRP looked at how A’s communication needs interacted with his behaviour needs and how carers managed the interaction. It showed it asked the sort of questions the guidance suggests it should. We do not think the reference to his behaviour being on occasion is material to its consideration of the complexity of the need.
149. Mrs E says A could not let people know when he is pain. We appreciate this must have been difficult for Mrs E to see.
150. The IRP says A’s cognitive impairment meant he could not communicate his needs. It also identified that his mood could be linked to his pain. The IRP’s comments show it agreed with Mrs E that A could not communicate his pain. But it also suggests there were other ways for staff to identify and manage his pain. The daily records charts reflect the IRP’s comments.
151. Mrs E says the IRP said staff were not upskilled. She told us it has not taken into account the thorough training staff were given before beginning to care for A.
152. The IRP reflected staff were trained in a specialist area to have the skills needed to do the role. We can see there was an element of training required to meet his needs. The records do not show there was any further specialist training provided to staff, outside what would normally be provided to any staff working with a resident they have not worked with before.
153. We think the IRP showed it considered the interaction of A’s needs and the skills needed to manage them. In doing so it reached a reasonable evidence based conclusion.
154. We think the IRP made its decision in line with the National Framework. We found no failings in this part of the complaint.
Unpredictability
155. In the IRP’s consideration of unpredictability, we would expect to see an analysis of:
‘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.’
156. Mrs E says the unpredictability indicator is inaccurate because it was based on a generalisation of A’s autism and sensory diagnosis. The IRP says A’s needs were within a range expected for a person with autism and sensory difficulties. Mrs E says this comment does not consider A’s individual needs.
157. The NHS defines autism as presenting differently for everyone. It explains it can have a significant or minor effect on how people act and the support they need.
158. The NHS explains sensory processing difficulties as how people understand the world around them. It is also a broad term covering several presentations and levels of need.
159. Given the wide range of needs associated with these conditions we could not criticise the IRP’s description. But we can see why Mrs E felt it did not consider A’s individual needs when read in isolation.
160. The IRP’s full consideration draws out A’s needs. It discussed his mood and behaviour and the care needed to meet these needs. The IRP acknowledged that sometimes additional support was needed.
161. Mrs E also says A’s needs fluctuated they were not stable.
162. The IRP found A’s needs did not rapidly fluctuate. It highlighted his mood changed and this linked with his behaviour. Staff were familiar with this link. This allowed them to plan for his care and deliver it routinely.
163. The records show a consistent care plan. A had several needs and the needs change depending on other factors, such as his mood. We have not seen any indication the care plans changed.
164. The IRP acknowledged the changes in A’s needs, but it says they can be planned for. We have seen no evidence to suggest this was not the case.
165. In this section the National Framework directs the IRP to consider stability in terms of an individual’s overall health, rather in their specific day to day needs.
166. Although the records show A’s needs were variable, there is no evidence in the records that suggests his health was unstable.
167. We think the IRP showed it considered the appropriate questions and made its decision in line with the National Framework and NHS guidance. We found no failings in this part of the complaint.
Quality of the IRP report
168. Mrs E says there are multiple errors in the IRP’s report. She says the report refers to left sided weakness at one stage, and right sided weakness at another. Mrs E says A did not have a weakness; he was completely unaware of the right side of his body.
169. In the background section of the annex, the IRP noted Mrs E told the IRP A had no use of his right side. Following this it recorded Mrs E’s advocate said Mrs E wanted to get across to the Panel how strong Mr E was on his right side.
170. We do not know if the IRP’s note taking was wrong, or if the wrong side was accidental referred to in the hearing. We can see Mrs E’s accurate description of A’s needs was also noted.
171. When discussing the behaviour domain, the CCG representative commented A had left hand weakness. We have not seen any other reference to weakness in the report.
172. The IRP did not make these comments. In the main report the IRP’s consideration of the mobility domain says A could not use his right arm but using his left arm to help. The IRP did not specifically refer to weakness in A’s left or right side.
173. We would expect the annex to accurately reflect the discussion that took place at the hearing. This means it will not necessarily accurately reflect A’s needs. The inclusion of these comments does not bring the IRP’s consideration into question.
174. Mrs E also reiterates the error in the drug therapies and medication domain, relating to the date of A’s last seizure. She says this suggests the IRP did not consider the correct information and reach a fair conclusion.
175. Under the ASC domain weighting the IRP recorded A had not had a seizure since 2010. GP records show A’s last seizure was on 22 December 2015. The annex says A has had no seizures since 2016. Elsewhere in the report IRP referred to A’s last seizure in June 2010.
176. Our principles say public bodies should balance the evidence appropriately in their decision making.
177. Mrs E does not specifically dispute the weighting of the ASC domain. When we looked at the IRP’s consideration of the drug therapies and medication domain, we saw no evidence the IRP did not correctly balance the evidence.
178. Although this date was captured incorrectly, we are satisfied the IRP’s decision making correctly balanced the evidence in line with our principles.
179. Mrs E says she feels her evidence has not been fairly weighted. She says she is an expert in her son’s needs, and this has not been acknowledged.
180. When we look at a complaint about an IRP’s decision, we want to see the IRP has considered all the evidence available to it. However, paragraph 60 of the National Framework says: ‘Establishing that an individual’s primary need is a health need requires a clear, reasoned decision, based on evidence of needs from a comprehensive assessment’
181. This means the IRP must show which evidence clearly demonstrates a primary health need. Family accounts help show key issues and direct the IRP to relevant records, but we would not expect to see an IRP award CHC funding without records showing evidence of a primary health need.
182. We can see this might be very frustrating, but a decision based on a verbal account alone would not be in line with the National Framework.
183. We have looked specifically at the errors Mrs E thought the IRP made. We did not see any indication it weighted her evidence unfairly. We found no failings in this part of the complaint.
Conclusion
184. We looked at the report alongside the checklists, the Decision Support Tools (DST), hospital, GP and care records. We also looked at all supporting information Mrs E gave us throughout the process.
185. From what we have seen, the IRP’s comments are in line with the available evidence. Overall, it is clear A had some needs, particularly in the cognition and behaviour domains. We do not underestimate how difficult this process has been for you knowing A had these needs. We have seen no failings in the IRP’s conclusion that all together A did not meet the CHC eligibility criteria in this period.
186. In this report we have set out our decision about Mrs E’s complaint. We have thoroughly and impartially investigated the complaint and drawn conclusions from careful consideration of the evidence.
187. We have not seen any evidence NHSE’s IRP did anything wrong and it is on this basis we do not uphold this complaint.