15. Before we explain our decision, we will outline how we look at complaints like this. We discussed this with Mrs V when we started our investigation.
16. NHSE Guidance says an individual receiving care or their representative may apply for an IRP to review a CSU’s decision to decline funding. Whether an individual has a primary health need and is eligible for NHS CHC funding is a discretionary decision, meaning a decision based on reason, judgement, and opinion. It is our role to review the available evidence to decide whether decisions were made in line with the National Framework. We will refer to the 2018 National Framework as this is the version of the guidance NHSE used in reaching its decision.
17. The National Framework says NHSE can decide not to hold an IRP if the individual falls well outside the eligibility criteria, or where the case is very clearly not appropriate for the IRP to consider. Paragraph 206 of the National Framework says: ‘NHS England does have the right to decide in any individual case not to convene an independent review panel. It is expected that such a decision will be confined to those cases where the individual falls well outside the eligibility criteria, as set out in the standing rules, or where the case is very clearly not appropriate for the independent review panel to consider (see Annex D)’.
18. The eligibility criteria or four key indicators is the consideration of the nature, intensity, complexity, and unpredictability of a person’s needs. In line with the National Framework, we would only expect NHSE to look at the eligibility criteria when deciding whether to hold an IRP, and not the care domains or concerns the applicant may have about the CSU’s process.
19. We understand Mrs V wanted the opportunity to discuss the care domains with NHSE. Paragraph 3.1 of NHSE’s report has a brief section on care domains. It says NHSE considered Mrs V’s submissions and found evidence the CSU had taken the appropriate information into account when making its decision.
20. We are sorry Mrs V did not have the opportunity to discuss these. However, as NHSE decided not to hold a full IRP (where the care domains would have been discussed in full) we do not consider it a failing to have not looked at her disagreement with the care domains.
21. We are aware Mrs V had a number of specific concerns about the CSU’s process and decision she took to NHSE for it to consider. As NHSE decided not to hold an IRP, these matters were not considered. Again, if a decision is made at IR and an IRP is not held, we would not expect NHSE to consider these. This is not a failing. We have not ignored Mrs V’s specific concerns but as an IRP was not held to discuss these, we cannot look at these issues. We can only look at its decision not to hold an IRP.
22. Also, we know Mrs V’s concerns relate largely to the process followed by CSU from the start. As she completed the CSU’s appeal process and escalated her complaint to NHSE, it is NHSE that we investigate. It was the last organisation responsible for considering the complaint. We cannot make a decision on eligibility or award funding. If we find failings in NHSE’s consideration, we will ask it to reconsider its decision.
23. We reviewed the evidence the IR considered. This includes the questionnaire Mrs V completed dated 4 October 2018 to apply for an independent review, and her letter dated 29 October 2018.
24. The National Framework paragraph 206 says, ‘Before taking such a decision, NHS England should seek the advice of an independent review chair who may require independent clinical advice. In such cases where a decision not to convene an independent review panel is made the individual, their family or carer should receive a clear written explanation of the basis for this decision’.
25. NHSE’s report page one and the introductory paragraphs show a Chair and clinical adviser were involved in the decision-making. This is in line with the above guidance.
26. Paragraph 1.2 of the report says the report provides an explanation for why it has decided not to hold an IRP. The report says it gives a brief summary of its findings. We are satisfied the report gives a clear, written explanation of its decision. We will explain why below in considering each of the four key indicators. We will summarise the views of the CSU, Mrs V and NHSE and then give our decision on each indicator.
Nature
27. The National Framework states that the ‘nature’ indicator describes the characteristics of an individual’s needs (physical, mental health and 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.
28. The CSU says Mrs E could be aggressive and uncooperative, her cognition level was poor because of her dementia, there was no evidence of any psychological issues, she was immobile, required feeding and wore incontinence pads. She had a grade two sore in October 2010 and had the use of a repose mattress and pressure cushion. A district nurse attended to a skin tear in August 2010 and carried out leg dressings in October and November 2010 when she developed cellulitis (a bacterial infection of the skin). This was treated with antibiotics, and she also had a course of antibiotics for a boil.
29. In Mrs V’s detailed letter, dated 29 October 2018, she says Mrs E ‘seemed to be anxious when being handled’ and would be resistant to care, often lashing out. She says due to her low cognition she could not understand or be reasoned with and could not communicate her needs or engage in conversation. She explains all her needs had to be anticipated. She says skilled staff could ‘diffuse her fears’ but her care took longer because of her resistance.
30. The report says how Mrs E’s had progressive dementia and lists her medical history. It says she was doubly incontinent and her skin was vulnerable to breakdown. It describes what kind of care she needed to address these needs. It says she needed help to eat. Because of her dementia she could become aggressive, but this did not affect her care being given.
31. It describes her medication regime as being non-complex and that she needed two carers for moving and handling. It recognised she needed regular monitoring for her cognition, continence, skin, mobility, communication, and behaviour needs but felt these were met by the care home with oversight of a qualified nurse. It did not find her needs to be of a nature over and beyond what a local authority could legally provide.
32. NHSE’s report shows it considered Mrs E’s medical history and it acknowledged how in particular her dementia affected a number of her needs. This agrees with what the CSU and Mrs V say. NHSE did not find that Mrs E’s aggression or resistance meant that care could not be given. This differs from what Mrs V says about the need for skilled staff whose care took longer to deliver.
33. We looked at the available records. The GP records show Mrs E was prescribed lorazepam in November 2010 to ease her agitation. The care plans give evidence of Mrs E needing all her personal care needs to be met and 24-hour care being given. There are no care home records, but in the GP and district nurse records, there is no evidence of resistance meaning care could not be given.
34. We can see Mrs E needed specialist equipment to manage her needs. She needed review by district nurses for her skin tear and skin wounds. These are skilled staff but input like this would not be considered as care beyond what a nursing home should provide. This is because care home staff are expected to care for personal needs, even if required on a 24-hour basis and to seek input as and when required. We do not think NHSE missed evidence or did not consider it properly. We have not seen evidence of where specialist input was needed to meet every day personal care. Or of the time needed to address needs, being beyond what can be provided in a care home.
35. We acknowledge that sadly due to Mrs E’s dementia, her condition would deteriorate. We do not think the evidence suggests the impact of her needs had a negative impact on her overall health and wellbeing. Her symptoms are indicative of dementia. We have not seen evidence to suggest Mrs E’s needs were not met in a timely way. We also acknowledge that her needs interacted across several care domains. However, we have not seen evidence to suggest NHSE did not look at the nature indicator correctly to fully consider if there was an indication of a primary health care need.
Intensity
36. Intensity relates to the extent (quality) and severity (degree) of the needs and to the support required to meet them. This includes the need for sustained/ ongoing care (continuity).
37. The CSU says two carers were needed to help with mobility and one carer to feed Mrs E. It says her needs were not intense but required regular planned care from the home with support of the district nurses and GP.
38. Mrs V describes Mrs E’s needs as intense as she could not do anything for herself and was entirely dependent on carers and her family. She explains family and carers had to ‘constantly watch, carefully interpret, and use their skill and knowledge of [Mrs E] to anticipate her needs, taking into consideration every clue and nuance of her body language, behaviour and reactions’.
39. She says Mrs E could not stand, walk, or reposition herself as her muscles were weak. She needed equipment such as a hoist, wheelchair and slide sheet and the help of at least two carers. She explains her lack of mobility affected her skin integrity and continence. She says the GP and district nurse made frequent visits between June and November 2010 to monitor wounds.
40. NHSE’s report says Mrs E was reliant on others for her personal care and needed monitoring across many of the care domains. She needed time and patience from carers. It says there is no indication of care interventions taking a long time or of problems alleviating needs and symptoms. It accepted Mrs E had needs in a number of care domains, but she did not need sustained care interventions or continual care and monitoring over and beyond what a local authority should legally provide.
41. We have considered whether NHSE looked appropriately at the severity of needs, how frequently, and to what extent they varied, and what level of support was needed.
42. We have established Mrs E needed carers for her every day personal care. She could not communicate her needs. There is interaction between her needs across several care domains. Her care was 24-hour and this type of care is typically given in a care home. NHSE’s report shows it understood her needs but did not find these intense, variable, or that increased support or interventions were needed.
43. The GP records give evidence of ongoing wound care management, with support being given by the district nurses. These records say advice would be taken from the GP or Tissue Viability Nurse (TVN) if needed. In the district nurse records there is evidence of pressure ulcer risk assessments and care plans. The care plan says the carers would report any concerns. We appreciate we do not have care home records to look at, but a care plan entry commenting on the skin care management dated 2 November 2010 says, ‘carers report no concerns’.
44. We think NHSE looked at this indicator appropriately. It accepted the frequency of care Mrs E needed and the staff needed. But the evidence does not suggest intensity as the care was planned and there are no significant variations to the care planning. The level of support did not significantly change and, from what we have seen, input was taken when needed but not indicative of care needs not being beyond what could be managed by a local authority.
Complexity
45. Complexity is about 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 could include the presence of multiple conditions or interaction between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as where a physical health results in the individual developing a mental health need.
46. The CSU says it did not find evidence of complexity in the available records. It says care needs were met by routine daily care.
47. Mrs V says Mrs E’s needs were complex because of her dementia and the skill needed to manage this. She says there was a high risk of malnutrition and dehydration as Mrs E could not communicate when she was hungry or thirsty. She says all her food had to be pureed and she had difficulty swallowing and drinking without help. She could splutter and choke, so carers had to be aware of this risk.
48. NHSE says Mrs E’s care plans were established and not complex. It says the level of skill needed to monitor and manage were well within the level expected in giving ‘fundamental care and assistance’. It says a nursing home environment was suitable and there was no evidence that her condition was complicated or difficult to manage.
49. We looked at whether NHSE appropriately considered how different needs interact with each other to increase the knowledge and skills staff need.
50. NHSE stated regular observation and monitoring was needed to meet Mrs E’s cognition, continence, skin, mobility, communication, and behaviour needs. It realised there was interaction between these needs. However, this alone does not indicate complexity. We need to consider if this meant the level of skill and knowledge required was above what a care home could provide.
51. As we have said, the evidence shows there was input from the GP and district nurses. The district nurses visited Mrs E weekly and twice weekly to change her dressings and check on her skin wounds. We have not seen evidence to say it was difficult for the care home staff to meet the care plans made by the district nurses or that the district nurses were not able to care for the wounds. There is no evidence of the TVN needing to provide sustained intervention.
52. We know Mrs E needed carers to provide her nutrition and hydration and there was a risk if these needs were not cared for fully. We have not seen any evidence to show the care home did not meet these needs, that skilled input was needed or that Mrs E’s response to the care made it difficult to manage.
53. For these reasons, we think the IR looked at this indicator appropriately and did not miss evidence to suggest a complexity indicative of a primary health care need.
Unpredictability
54. Unpredictability is the degree to which needs fluctuate and result in challenges in managing them. It relates to the level of risk to the person’s health if carers do not give adequate and timely care. A person with an unpredictable healthcare need is likely to have a fluctuating, unstable or rapidly deteriorating condition.
55. The CSU says Mrs E’s needs were not unpredictable.
56. Mrs V says as Mrs E was bed bound with cot slides in place. Her need was not ‘unpredictable in the simplest sense of the word, but the unpredictability here was in the level of risk involved if timely care is not provided as this could lead to severe deterioration of health’. She says turning and repositioning took place every one to two hours.
57. NHSE says there was no evidence that Mrs E’s needs needed intervention beyond planned fundamental care. It says her needs could be anticipated and were stable. It recognised she needed 24-hour care and supervision for her health and safety with monitoring to ensure her needs were met. It did not find evidence of a fluctuation in her needs. We looked at whether the IR appropriately considered how much, how often, and how unexpected changes in condition affected the care needed.
58. We can see Mrs V feels Mrs E’s needs were unpredictable because there was a risk of her needs not being met in a timely way, which could lead to deterioration. We appreciate Mrs V’s thoughts on this, but we need to measure unpredictability as defined by the National Framework (referenced above).
59. From the available records, we did not see evidence of rapidly changing needs being reflected in changes to the care plan. There is no evidence of there being challenges to meeting changing needs, needs changing at short notice, or of Mrs E’s condition being unstable. We realise there is a risk if timely care is not given but we have not seen evidence of the care home being unable to give timely care. The care home was able to anticipate the needs and although this was achieved by continual monitoring, this would be expected when 24-hour care is given by a care home.
60. We do not think NHSE failed to consider this indicator appropriately or that it missed evidence suggesting unpredictability.
61. The evidence suggests Mrs E needs were not of a nature, complexity, intensity, or unpredictability to indicate a primary health, that carers could not care for within routine social care. Therefore, NHSE acted appropriately in not convening an IRP in line with paragraph 206 of the National Framework.
Summary and other concerns
62. We understand Mrs V spent time putting together a detailed submission for NHSE and was hoping for a more specific response. Our view is NHSE carried out the IR in line with the National Framework and explained why it did not decide to hold an IRP. It commented on the areas required under the IR process.
63. We have seen the report does not document the concerns she raised. But, having looked at her submission, and the available evidence, we have not seen anything to suggest it missed or did not consider her evidence in reaching a decision. The report states what information it considered (paragraph two) and this includes her comments and appeals. It does not specifically state it considered her detailed letter of 29 October 2018. But this letter is included in the case file NHSE sent to us so we know it had this document.
64. Our Principles of Good Administration explain what is meant by good administration and help organisations give a first-class service to customers. They say organisations should ‘create and maintain reliable and usable records as evidence of their activities’. We are not saying NHSE’s records are unreliable. But we think it would be better if the report referred to Mrs V’s concerns and her 29 October 2018 letter to show it had considered these. We will feed this back to NHSE. However, it does not change our decision on the IR process or decision it reached.
65. Mrs V told us when they (her and her father) applied for a retrospective review in 2010, approximately, the care home was open. She says by the time the CSU dealt with her application, the care home was closed and all records were destroyed. She does not know if this was because of its retention policy.
66. We can see Mrs E lived in the care home from January 2009. When we spoke with Mrs V at the start of our investigation, we explained how it does not seem likely that CSU’s would, or should, request records while an application is in the queue. When the CSU starts to look at an application, we would expect it to make reasonable attempts to get records. Information in the NHSE case file shows the CSU received a claim in September 2012. There is evidence of the CSU writing to the care home in November 2013 to ask for the care records.
67. The report says NHSE are aware of the missing records. It felt the decision support tool (DST - a tool used to bring together evidence about a person’s care needs to inform an eligibility decision) ‘accurately reflected Mrs [E’s] needs’. The CSU and NHSE can only use the information available to it.
68. From what we have seen, we do not think the CSU delayed in attempts to get the care home records and as said above, we would not expect it to do this while an application is in the queue. It is right for NHSE to acknowledge where records are missing. We agree that in the absence of records, the account of family is important. We have not seen anything to suggest that NHSE ignored Mrs V’s submissions.
69. We have seen from correspondence with the CSU that Mrs V queried why the period had changed. NHSE considered the period Mrs V applied for. On the completed questionnaire it says the period under review was 17 April 2010 to 11 November 2010 and this had been changed from 1 October 2007 to 11 November 2010. It is not a failing for NHSE to have considered the revised period as this is what it was asked to do. We would not expect it to look into why the period had changed when holding the IR.
70. The report comments on the changed dates and says it is ‘satisfied the previous time frame had indeed already been reviewed’. This is in line with paragraph 259 of the National Framework which says where a checklist or DST has already been completed (with the result being the individual was not found eligible for CHC) and there has been no material change in need, it is not necessary to review the period again.
71. We know Mrs V contacted NHSE after it sent its decision as she is worried it based its decision on documents that had been completed, including errors. We are sorry to hear NHSE’s response to this was not that helpful. NHSE looked at the CSU’s documents and its role was to consider if the evidence supported the assessments it completed and its eligibility decision. It has to look at these documents but does not mean it accepted the information these contain at face value. Mrs V has a copy of the case file and will see from this what assessments NHSE had access to. And its report explains what information it considered.