17. Before we decide if we should investigate a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and find no signs that something has gone wrong.
18. It is our role to decide whether NHSE’s IRP made the decision that Mrs T was not eligible for CHC funding in line with the National Framework. We cannot question discretionary decisions if they have been made without fault. This includes decisions about eligibility for CHC. So, we can only uphold a complaint about an eligibility decision if there is some specific fault in the way the IRP reached the decision. Such decisions are based on clinical judgements and opinions.
19. The purpose of the IRP is to review the ICB’s procedure in making a decision about a person’s eligibility – the primary health need decision. In reaching a view about whether the ICB followed the correct process and correctly applied the eligibility criteria, the IRP can:
• recommend the ICB reconsider the case and address any faults identified in the process, or • reach a view on whether the individual should or should not be considered to have a primary health need.
20. When we look at a complaint about an IRP, we consider if it considered all relevant information when it made its eligibility decision. To help us decide, we consider four key areas.
Did the IRP get all the relevant evidence?
21. Paragraph 199 of the National Framework says, ‘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.’
22. The IRP says it relied on the following evidence:
• NHS CHC checklist, 10 June 2008 • NHS CHC checklist, 16 November 2009 • representative submission, February 2016 • DST, 9 May 2016 • retrospective multidisciplinary panel, 18 February 2016 • NHS CHC review of eligibility decision, 11 May 2017 • representative submission, July 2017 • letter from the ICB to Mrs H’s representative, 24 October 2017 • representative submission, April 2018 • risk assessments and care plans • nursing home care records • GP records • hospital records • correspondence between Mrs H’s representative and the ICB, and • evidence given by Mrs H and her representative during the IRP meeting on 16 October 2020.
23. We also have a copy of the IRP’s report. It is clear the IRP had access to all the information the ICB used to make its decision on 9 May 2016. The IRP gave Mrs H an opportunity to provide verbal evidence during the meeting on 16 October 2020, with the support of her representative. It also had access to her representative’s written submissions.
24. We can see there are no obvious omissions in the documents and evidence considered by NHSE. We are satisfied there are no signs of failings in how the IRP established all the appropriate and relevant clinical facts.
25. We think the IRP acted in line with paragraph 199 of the National Framework here.
Before it made its decision, did the IRP consider all the relevant evidence?
26. On 26 November 2020, the IRP concluded Mrs T did not have a primary health need. We have considered whether the IRP clearly explained how it reached its decisions in the disputed areas of:
• communication • cognition • behaviour, and • drug therapies and medication: symptom control.
27. We have looked at the information in the IRP report and considered how the panel discussed all the available evidence when it was weighing up the disputed areas. We can see the IRP discussed Mrs H’s written and verbal evidence as her views about Mrs T’s needs are referred to throughout the report.
28. We can see the IRP considered information in Mrs T’s care records. When it explains its weighting (scoring) for each area, it refers to specific items of information such as risk assessments and medication charts. We can also see the IRP had the National Framework in mind when it weighted and referred to the relevant criteria for each area.
29. The IRP listened to the reasons why Mrs H disagrees with the weighting for each area and considered her representative’s written submissions.
30. We see evidence to show consideration of Mrs H’s views. For example, for the cognition area, Mrs H and her representative referred to a Mini Mental State Examination score of 8 out of 30 from 2011, which Mrs H says shows a ‘high’ level of need.
31. The IRP explains this was a projected score based upon an expected average decline of two points per year from a score of 26 out of 30 in 2000. The IRP weighted this evidence with a discussion with Mrs H about her interactions with Mrs T and other family and staff members, including basic decision-making about her day-to-day care.
32. Mrs H also refers to Mrs T having swallowing difficulties and the impact this had on her ability to take her medication. The IRP highlights 33 instances of Mrs T being ‘non compliant’ between 18 February 2005 and 21 December, averaging one incident every two months. They do not find this ‘excessive’.
33. The IRP did not find evidence this had an impact on other areas or on variations in Mrs T’s mental state or medical conditions, which is necessary to show a ‘high’ level of need.
34. The IRP considered the available evidence and Mrs H’s views in each area. Paragraph 199 of the National Framework is also relevant to this part of the IRP’s considerations, and we think the IRP acted in line with the guidance here.
Did the IRP clearly explain how it had reached its decision?
35. Paragraph 150 of the National Framework says, ‘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 shows discussion and consideration of the four key characteristics (nature, complexity, intensity and unpredictability). We can see the IRP considered all the available evidence, including the written and verbal views of Mrs H and her representative.
37. The IRP concludes that its consideration of the four key characteristics did not result in the finding that there was a primary health need. The IRP applied the tests and feel Mrs T’s needs were at a level which could be met by a local authority.
38. We consider the IRP’s reasons are consistent with the evidence referred to and the domain descriptors, as set out above.
Did the IRP apply the appropriate eligibility tests and reach a conclusion based on the evidence?
39. The IRP applies an eligibility test to help it make a decision about a person’s CHC eligibility. The National Framework separates this test into four key characteristics: nature, intensity, complexity and unpredictability. The test is used to find out if the amount or type of care needs is more than the local authority can provide. This would show the person has a primary health need, which, in turn, shows they are eligible for CHC.
40. The National Framework sets out questions for the IRP to ask to help find out a person’s level of need. They are outlined in ‘Practice Guidance 3, When identifying a primary health need, how should the four key characteristics be approached?’ (PG3). The National Framework is clear the questions it provides are not meant to be strictly applied and are there to guide the IRP’s considerations. We use these questions when we look at whether the IRP properly considered the four key characteristics of Mrs T’s needs.
41. Mrs H tells us she disagrees with the IRP’s consideration of each of the four key characteristics. We can see she gave her views on each key characteristic directly to the IRP and these views are recorded in the IRP’s report.
42. Paragraph 124 of the National Framework says:
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.
43. Mrs H disagrees with the rationale for the four key indicators. As such, we have considered whether the IRP’s decisions and rationale about the four key indicators were based on evidence. We consider each key indicator in turn and give the definitions according to the National Framework.
Nature
44. ‘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.’
45. Paragraph 3.3 of the National Framework sets out questions to ask 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?’
46. The IRP documented Mrs H and her representative’s views of the evidence. Mrs H’s representative said Mrs T’s behaviour and cognition areas should have been assessed as ‘severe’ instead of ‘high’. They believe this would have shown Mrs T had a primary health need and so was clearly eligibility for full NHS CHC funding.
47. Mrs H agrees with her representative’s summary and disputed six areas of Mrs T’s DST assessment. Four of these areas remained unchanged while two were changed in favour of Mrs H.
48. The IRP recognises Mrs T had needs in 11 out of 12 care areas. It also recognises some of these were connected to each other, but it does not recognise any areas of need which could not be met by residential care staff overseen by a registered general nurse. Mrs T received funded nursing care from 9 May 2002.
49. The IRP summarises Mrs T’s needs across these 11 areas, taking account of those which may be connected, such as when her speech may be more difficult to understand if her behaviour was challenging or if she was confused because of her cognitive or psychological needs.
50. It recognises Mrs T needed to live in a safe and secure 24-hour care environment to meet her needs. It does not identify any needs requiring external support or specialist skills to meet them effectively.
51. The IRP concludes the nature of Mrs T’s needs did not show a primary health need for the time under review. It says the care she was receiving was not more than incidental or ancillary to the provision of local authority accommodation which social services have to provide. The nature of the care required was not beyond that which a local authority could be expected to provide.
52. We can see the IRP considered Mrs T’s needs and the actions required to meet them, for example in terms of care plans and risk assessments.
53. Overall, the IRP considers Mrs T’s needs were mostly routine and her care did not need to be of a particular level or skill above what would be expected of local authority staff. It says her needs were not greater than a local authority could legally provide care for. These needs appear to have been met effectively.
54. Mrs T communicated her frustration with her care at times, through verbal and physical behaviour which could be challenging for staff. The staff providing her care usually anticipated this and her needs were generally met except for her occasionally declining care, such as at mealtimes or her medication.
55. The IRP’s consideration is based on the evidence available to it, and it considered the evidence from Mrs H and her representative when they disagreed with the IRP. So, we see no signs of failings in the IRP’s reasoning about the nature of Mrs T’s needs.
Intensity
56. ‘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”).’ Paragraph 3.4 of the National Framework sets out the following questions to ask when considering this need:
57. ‘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 [areas]?’
58. Mrs H refers to care needs in several areas. Mrs H and her representative say Mrs T’s care needs for behaviour and cognition should have been assessed as ‘severe’, which may have shown a higher level of intensity in these areas of need.
59. Mrs H’s representative also provides several examples relating to mobility, nutrition, drug therapies, behaviour, breathing, psychological and emotional needs, and cognition which they believe show an intense level of need.
60. The IRP decided none of Mrs T’s needs were classified as 'severe’ or 'priority’. They recognise Mrs T had needs in 11 out of 12 care areas, and that some of these needs are connected, as Mrs H suggests. But they find no evidence of this care being ‘protracted’ or requiring multiple members of staff, except for mobility and hoist transfers. They do not find evidence to suggest care was ‘particularly problematic’.
61. The IRP found Mrs T required planned care which did not require a significant amount of nursing or therapeutic intervention, although Mrs T was eligible for funded nursing care from 9 May 2002. The IRP accepts Mrs T was dependent on carers to anticipate her needs and says these needs were well met by staff with no medical training. Mrs T’s needs were overseen by a general nurse.
62. The IRP notes Mrs T’s care plans ‘remained very similar’ during the review period, suggesting her needs were stable.
63. They conclude the evidence does not show an increased number of interventions with many staff for lengthy amounts of time and so do not show a level of intensity associated with a primary health need.
64. We have considered the IRP’s reasoning. We can see the IRP has considered the views and evidence of Mrs H and her representative in relation to behaviour and cognition to decide Mrs T’s level of need in these areas. We can see no signs of failings relating to these considerations.
65. The evidence suggests full consideration was given to the frequency and duration of care interventions, how many staff were required to provide care and the level of skill they needed to provide care which met Mrs T’s needs. Although care needs were connected to each other, this did not result in difficulties or complications in providing care.
66. Given the above, we do not consider there to be any signs of failings in the IRP’s decision-making process about the intensity of Mrs T’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
Complexity
67. ‘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.’
68. Paragraph 3.5 of the National Framework sets out the following questions to ask 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?
69. Mrs H and her representative’s views are not documented under this key characteristic heading, but their views about connected needs are documented elsewhere in the IRP’s report.
70. During the IRP meeting, Mrs H shared her views about the lack of nursing staff available to provide care. She also discussed her concerns about Mrs T being in pain during basic care, such as having her fingernails trimmed.
71. Mrs H’s representative provided information in their February 2016 submission about how Mrs T’s mental health interacted with her physical health needs. They also gave their views on other areas of care, such as pain management, skin integrity (skin health), continence and behaviour. They provided a view of how these needs related to each other, for example risks of pressure sores and continence care.
72. The IRP has carefully considered the connections between Mrs T’s different needs and finds no complexities. It provides examples of connections between care areas and how they affected Mrs T, for example the connection between Mrs T’s mobility needs and continence care and her resulting distress, which she expressed through challenging verbal and physical behaviour. The IRP does not see any significant challenges or need for specialist staff training to provide additional care.
73. Given the above, we do not consider there to be any signs of failings in the IRP’s decision-making process about the complexity of Mrs T’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
Unpredictability
74. ‘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.’
75. Paragraph 3.6 of the National Framework sets out the following questions to ask when considering this need:
‘Questions that may help to consider this include:
• Is the individual or those who support him/her able to anticipate when the need(s) might arise?
• Does the level of need often change? Does the level of support often have to change at short notice?
• Is the condition unstable?
• What happens if the need isn’t addressed when it arises? How significant are the consequences?
• To what extent is professional knowledge/skill required to respond spontaneously and appropriately?
• What level of monitoring/review is required?’
76. Having considered the views from Mrs H, her representative and the IRP, we see no evidence of sudden changes in Mrs T’s needs.
77. No specialist knowledge or action was required to care for Mrs T or meet her needs. The care staff anticipated and responded appropriately to her needs.
78. The care staff knew anticipated Mrs T’s challenging behaviour at times and how to respond to it. They knew she would sometimes be compliant with interventions and sometimes she would not, and they used planned measures to manage this. This is in reference to evidence from the care plans, including weighing up the incidents highlighted by Mrs H’s representative.
79. This is a key piece of evidence that shows while Mrs T’s care needs fluctuated, they were predictable. This suggests she had a stable level of need.
80. Given the above, we do not consider there to be any signs of failings in the IRP’s decision-making process about the predictability of Mrs T’s needs. The IRP’s reasoning is supported by the records and in line with the National Framework.
81. We understand Mrs H has pursued her complaint for a prolonged period and we are sorry to hear of her concerns. We appreciate this decision will be a disappointment to her. Our decision does not take away from the challenges faced by Mrs T towards the end of her life and the effect this complaint has had on her family.