12. CHC describes the care provided over an extended period of time, to meet physical or mental health needs arisen as a result of disability, accident, or illness. If someone meets the criteria to receive CHC funding, their care will be funded by the NHS.
13. It is our role to decide whether NHS England’s IRP made the decision that Mrs I not being eligible for NHS continuing care was in line with the National Framework. Such decisions are based on clinical judgements and opinions, and we cannot question discretionary decisions when they have been made without maladministration. This includes decisions about eligibility for NHS continuing care, meaning we can only uphold a complaint about an eligibility decision if there is some specific fault in the way the IRP reached the decision.
14. The purpose of the IRP is to review the procedure followed by the CCG in making a decision about a person’s eligibility, or the primary health need decision by the CCG. In reaching a view about whether the CCG followed the correct process and correctly applied the eligibility criteria, the IRP can:
· recommend the CCG should reconsider the case and address any faults identified in the process, or · reach a view as to whether the individual should or should not be considered to have a primary health need.
15. When we look at a complaint about an IRP, we consider whether it took account of all the relevant information provided when reaching its decision. To help us reach a decision, there are four key areas we consider. We will consider each key area below.
Did the IRP establish all the appropriate and relevant clinical facts?
16. Paragraph 199 of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018) sets out the following:
‘the key elements involved in considering requests for independent reviews of NHS Continuing Healthcare eligibility include:
· scrutiny of all available and appropriate evidence as described in the Local Resolution section.’
17. Based on the information provided by NHS England, we can see the IRP considered the following:
· the timeline of events · the case summary · DST completed on 2 March 2016 · notes from the Local Resolution Meeting on 26 September 2018 · appeal dated 8 October 2018 · Needs Portrayal document · general correspondence including Mr I’s submissions · GP records · Care home records · Social services records · Hospital records · evidence provided during IRP meeting.
18. We note, Mr and Mrs I, Mrs I’s daughter, carer, and specialist nurses were present at the IRP. At the beginning of the meeting, we can see the Chair asked the representatives (Mr I) how they felt about the CHC process. We can see the Chair took into consideration the representatives’ submissions. We refer to the following examples:
· ‘[representative 1] indicated some skin breakdown and the need for continual preventative care.’
· ‘[representative 1] confirmed the very restricted mobility and the difficulties in positioning making mobility being of high risk.’
· ‘The family did not agree with this assessment and supported a high level, although a moderate level had been accepted at the LRM. Their view was that there were impediments to Mrs I’s ability to communicate, so that there was a requirement for others to interpret her needs, and she had no ability to use body language to communicate.’
· ‘Mrs I’s daughter (representative 2) stated that her mother could become anxious and emotional, in particular when she takes medication and during her continence management. [Representative 3] made the point about the significance of the psychological change in life for Mrs I and the impact on her emotional levels. Mrs I herself, indicated how ‘down’ she was much of the time’.
· ‘The family’s submission was that there were other needs that needed to be considered. Mention was made about the condition of Autonomic Dysreflexia, where early onset could result in significant HBP.’
19. We consider the available evidence demonstrates the IRP considered all the available evidence and there are no obvious omissions evident in the IRP’s consideration of Mrs I’s eligibility for NHS CHC funding. As such, we cannot see indications of failings in this part of IRP’s consideration.
Before it made its decision, did the IRP have a clinically led discussion about the impact and interaction of the clinical facts?
20. Paragraph 200 of the National Framework sets out the following:
‘NHS England is responsible for convening independent review panels consisting of: · an independent chair (appointed by NHS England); · a CCG representative; and · a local authority Social Services representative.’
21. We can see the following individuals were also present at the meeting:
· a clinical adviser (specifically, a registered mental health nurse · a local authority representative · a health representative · a CCG representative · an NHS England representative · an observer.
22. As such, we consider NHS England appropriately constituted a panel in line with the National Framework.
23. We note, Mr I disputes the IRP’s findings with respect to the a) communication, and (b) Altered States of Consciousness (ASC) domains.
24. Mr I disputes the scoring for two of the domains in the DST. He considers both domains should have been scored as 'high’, whereas the CCG scored both communication and ASC domains as ‘low’, and the IRP scored communication as ‘moderate’ and ASC as ‘low’.
25. We will consider whether the IRP had a clinically led discussion about the impact and interaction of the clinical facts within each of these domains below.
Communication
26. We can see the family explained at the IRP there were impediments to Mrs I’s ability to communicate, there was a requirement for others to interpret her needs, and she had no ability to use body language to communicate. As such, the family consider Mrs I should have scored a ‘high’ for this domain.
27. In its report, the Chair explained they considered the evidence and they concluded there was a moderate level of need for this domain. The Chair explained they accepted Mrs I has the ability, to some extent, to communicate, but also agreed that there were limits to this arising from her general mental and physical condition, and immobility.
28. We can see there was some discussion surrounding Mrs I’s ability to communicate and the factors which impaired this, which resulted in a clinically led discussion. We recognise Mr I’s account and that he disagrees with the IRP’s decision. We do not wish to take away from his account or what he has told us about Mrs I.
29. We consider the IRP had a clinically led discussion and explained in detail how it weighed up all of the evidence and came to its decision. This was in line with the National Framework, and we cannot see NHS England got anything wrong here.
ASC
30. Mrs I’s representatives explained, at the IRP meeting, Mrs I suffered with spasms and had postural hypertension. This is a condition where a person's blood pressure drops abnormally when they stand up after sitting or lying down, which they said should be considered to be proportionate with a high level of need for ASC.
31. In its report, the Chair explains there is little evidence that ASC issues were of significance and therefore agreed that there was a low level of need for this domain.
32. We acknowledge Mr I’s account about Mrs I’s needs in this domain. Our view is that the IRP considered his written and oral submission. It recognised his account and evidence alongside the medical evidence. The report shows a clinically led discussion of the key facts took place. The IRP explained the evidence it used to inform its decision making.
33. We understand the family are concerned about the IRP’s decision.
34. We consider the IRP explained the reasons for its views on the levels of need for each of the domains. We have seen no evidence to suggest any facts were overlooked, marginalised, or not adequately considered during the IRP process.
Did the IRP’s final decision adequately considerer and explain the conclusions of the clinically led discussion?
35. Paragraph 150 of the National Framework sets out the following:
‘Where an MDT recommends an individual is not eligible for NHS Continuing Healthcare, a clear rationale that considers the four key characteristics must still be provided. This must be based on the primary health need test, as set out in paragraph 58.’
36. The IRP report demonstrates a discussion and consideration of the four key characteristics (nature, complexity, intensity, and unpredictability), which make up the eligibility criteria for CHC funding. We can see the IRP considered all the available evidence including Mr I’s submissions.
37. The IRP concluded that its consideration of the four key characteristics did not result in the finding that there was a primary health need for Mrs I. The IRP looked at the totality of Mrs I’s needs and felt they were at a level which could be met by a local authority.
38. On reviewing the evidence available to us, such as care home records, GP, and hospital records, we consider the IRP’s rationale is consistent with Mrs I’s records and the domain descriptions. We have seen the IRP explained its rationale clearly and considered this alongside the four key characteristics.
Did the IRP apply the appropriate eligibility tests?
39. Mr I also disputes the nature, complexity, intensity, and unpredictability of Mrs I’s needs, which he believes show she had a primary health need.
40. Paragraph 124 of the National Framework sets out the following:
‘establishing whether an individual has a primary health need requires a clear, reasoned decision, based on evidence of needs from a comprehensive range of assessments relating to the individual. A good-quality multidisciplinary assessment of needs that looks at all of the individual’s needs ‘in the round’ – including the ways in which they interact with one another – is crucial both to addressing these needs and to determining eligibility for NHS Continuing Healthcare. The individual and (where appropriate) their representative should be enabled to play a central role in the assessment process.’
41. In his complaint to us, Mr I explains how the significance of Autonomic Dysreflexia, a life-threatening condition which can arise from a spinal cord injury, was completely downplayed at the DST meeting and at the IRP because it was well managed, as were a lot of Mrs I’s healthcare needs.
42. We will consider each key indicator below.
Nature
43. ‘Nature describes 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’.
44. Mr I explains tetraplegia, the inability to voluntarily move the upper and lower parts of the body, affects all of Mrs I’s body systems, so her care needs cannot be considered in isolation. He explains the management of Mrs I’s condition requires frequent and unpredictable interventions.
45. The IRP acknowledged Mrs I had a range of care needs and required help and support with these. It noted that she was reliant on care staff for her personal hygiene, continence care need, repositioning, and skin integrity. It also recognised Mrs I had a requirement for help and support for her emotional and psychological difficulties. These arose from her disability, in which tragic circumstances resulted in her spinal injuries.
46. The IRP considered that her care needs were ongoing but were mostly of a routine and regular nature, with care staff providing supporting her needs, with interventions from nursing staff, including the District Nursing service, for care that required that level of intervention and support.
47. Paragraph 3.3 of the National Framework sets out the following questions to consider when considering this need:
‘Questions that may help to consider this include: · How does the individual or the practitioner describe the needs (rather than the medical condition leading to them)? What adjectives do they use?
· What is the impact of the need on overall health and well-being?
· What types of interventions are required to meet the need?
· Is there particular knowledge/skill/training required to anticipate and address the need? Could anyone do it without specific training?
· Is the individual’s condition deteriorating/improving?
· What would happen if these needs were not met in a timely way?’
48. We have reviewed the information that was made available to the IRP. We can see the Chair considered Mrs I’s needs and the interventions that could reasonably be required to meet her needs. We can see that they also considered the impact of Mrs I’s overall health and well-being.
49. Overall, the IRP Chair concluded Mrs I’s needs were mostly routine and linked mainly to her activities of daily living i.e., help with personal care, encouragement to assistance with mobilising, etc. They said her needs were not over and above what a Local Authority could legally provide care for.
50. We can see the GP and care home records show Mrs I had issues with her mobility, experienced incontinence, needed staff to provide personal care, and needed daily monitoring of her skin. However, the evidence also shows that while Mrs I needed routine continence care, there were no significant skin issues, and there was no challenging behaviour. It is clear Mrs I had some needs, particularly in relation to mobility, continence care, repositioning, and skin integrity. However, these needs were mainly routine in nature and linked to day-to-day living. Therefore, we have seen no indications of failings in the IRP Chair’s reasoning that she did not have an overall high level of need.
Intensity
51. ‘Intensity relates 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’)’.
52. Mr I explains all of Mrs I’s transfers will require hoisting or the use of other specialist equipment. She will require regular monitoring of urinary output and bowel management, often including manual evacuation. He adds pressure relief will also be required at regular intervals over a 24-hour period.
53. The IRP has concluded that the majority of the needs and care interventions were provided by the care staff, and these were of a regular and ongoing nature, and consistent with what a Local Authority could provide.
54. The IRP explains, in its report, Mrs I required regular monitoring and some care interventions by qualified nursing staff, especially in relation to her continence and medication needs, and the District Nursing service, which is a mainstream health service that was a contributor to her care requirements. However, the IRP felt Mrs I’s care needs were largely the responsibility of care workers with the health service providing necessary oversight and some specialist interventions.
55. Paragraph 3.4 of the National Framework sets out the following questions to consider when considering this need:
‘Questions that may help to consider this include: • How severe is this need?
• How often is each intervention required?
• For how long is each intervention required?
• How many carers/care workers are required at any one time to meet the needs?
• Does the care relate to needs over several domains?
56. We have considered the submissions of the IRP and Mr I. From the available evidence, we can see Mrs I required regular monitoring, however, there is no evidence in the records which would suggest Mrs I required manual evacuation.
57. We are satisfied that there was no evidence to suggest that her needs required intense input to manage. While Mr I says there is a need for close and careful monitoring of Mrs I’s needs, there is no record of a departure from her care plan, other than the occasional input from the District Nursing service.
58. Given the above, we do not consider there to be any indications of failings in the IRP’s decision-making process about the intensity of Mrs I’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
Complexity
59. ‘Complexity is concerned with 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 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 need results in the individual developing a mental health need’.
60. Mr I explains the lack of mobility and anaesthesia of the skin, the complete absence of any sensation in the skin, adds significant complexity to Mrs I’s skin management, as does the continence management. Mrs I’s nutrition requirements have a direct impact on her continence management because of her neurogenic bladder, a condition in which problems with the nervous system affect the bladder and urination, and bowel. Her diaphragmatic breathing (the engagement of the stomach, abdominal muscles, and diaphragm when breathing) interacts with her ability to communicate her health needs. Her memory is impaired, and as such, she can become forgetful, which impacts her psychological and emotional well-being.
61. The IRP accepted that there was interaction between Mrs I’s needs, resulting in increased complexity, for example between her cognitive difficulties and her increased psychological and emotional needs, and communication problems. The IRP accepted that Mrs I had a range of needs, and a requirement for these to be met on a continual and ongoing basis because of consequences arising from her spinal injury.
62. The IRP concluded Mrs I’s needs were largely of an important but regular nature and were not above the limit of what a Local Authority could provide.
63. Paragraph 3.5 of the National Framework sets out the following questions to consider when considering this need:
• How difficult is it to manage the need(s)?
• how problematic is it to alleviate the needs and symptoms?
• Are the needs interrelated?
• Do they impact on each other to make the needs even more difficult to address • How much knowledge is required to address the need(s)?
• How much skill is required to address the need(s)?
• How does the individual’s response to their condition make it more difficult to provide appropriate support?
64. We have considered the submissions of the IRP and Mr I. From the available evidence, we acknowledge that there were interactions between some areas of Mrs I’s healthcare needs. However, we are satisfied the IRP’s finding that there was no indication that her needs were complex to manage is supported by the documented evidence, particularly the effective management of her skin and pressure sore needs.
65. We are further satisfied that the IRP’s finding that Mrs I’s care could be anticipated and planned accordingly, without the need for complex care planning or frequent reviews, is also supported by the evidence, particularly that carers did not need to depart from their care plans to manage her needs.
66. As such, we are satisfied there is no indication of maladministration in the IRP’s decision-making process about the complexity of Mrs I’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
Unpredictability
67. ‘Unpredictability describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition’.
68. Mr I explains that anyone with tetraplegia will have unpredictable care needs, which, if not dealt with, could have catastrophic consequences. He adds a list of the unpredictable care needs Mrs I has an individual with tetraplegia:
· risk of unpredictable episodes of incontinence · an autonomic dysreflexia, a clinical syndrome that develops in individuals with spinal cord injury, which would require urgent assistance · pressure relief to maintain skin integrity · high risk of choking · risk of poikilothermic syndrome, the inability to maintain a constant core temperature.
69. The IRP reviewed the evidence about levels of unpredictability regarding Mrs I’s care needs. It acknowledged there were occasional instances in the provision of her care where a component of unpredictability was present. Hence, the occasions of difficulties arising with her feeding, with concern that there would be choking episodes, and the concerns about repositioning and mobility when sensitive care was required. However, it concluded the evidence supported Mrs I’s care needs were in their nature both regular and routine.
70. We have considered the submissions of the IRP and Mr I. From the available evidence, we acknowledge that Mrs I had needs that did not follow a predictable pattern. However, we are satisfied that there was no evidence to suggest that her carers had to depart from the care plans, which demonstrates that they had given close consideration to what Mrs I required. We are further satisfied the IRP considered Mrs I’s needs individually and interactively, which is in line with the National Framework and the key indicators.
71. Given the above, we do not consider there to be any indications of failings in the IRP’s decision-making process about the unpredictability of Mrs I’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
72. We would like to reiterate that we do not think in any way this diminishes the effect the issues in Mr I’s complaint have had on Mrs I and her family.