14. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Miss B was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHS England should follow when considering if someone is eligible for CHC.
15. We cannot consider the discretionary decisions the IRP made when it decided on eligibility. This includes the decisions it makes based on clinical judgement and clinicians’ opinions. We can only consider if the IRP has followed the National Framework. This means we can only uphold a complaint about a CHC eligibility decision if we find the IRP did not follow the National Framework when it made its decision.
16. The IRP reviews if the ICB should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the ICB’s procedures when it made its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the ICB made a mistake, it can: • recommend the ICB reconsiders if the patient had a primary health need, and • recommend the ICB addresses any procedural faults the IRP identified.
17. When we look at a complaint about an IRP, we consider if it took into account all the relevant information when it made its eligibility decision. We discuss this regarding the well managed needs principle later in this statement.
Domains
Breathing
18. Miss B has told us she disagrees with how the IRP considered breathing domain. She says it should have been moderate, but the IRP weighted it as low.
19. She says the IRP misunderstood the relationship between her cerebral palsy and her breathing issues and were misadvised by the nurse assessor. She says the issue was not about what caused the breathing issues, but the level of need, in particular how hard it is for her to catch her breath. The IRP said Miss B rarely used her inhaler and her breathlessness was easily managed.
20. The descriptor for a low weighting for this domain is:
‘Shortness of breath or a condition which may require the use of inhalers or a nebuliser and has no impact on daily living activities.
or Episodes of breathlessness that readily respond to management and have no impact on daily living activities.’
21. The descriptor for a moderate weighting for this domain is:
‘Shortness of breath or a condition which may require the use of inhalers or a nebuliser and limit some daily living activities.
or Episodes of breathlessness that do not consistently respond to management and limit some daily living activities.
or Requires any of the following:
low level oxygen therapy (24%).
room air ventilators via a facial or nasal mask.
Other therapeutic appliances to maintain airflow where individual can still spontaneously breathe e.g. CPAP (Continuous Positive Airways Pressure) to manage obstructive apnoea during sleep.’
22. The IRP report described Miss B’s needs in connection with her breathing in a detailed manner. It said she liked to walk with her frame and acknowledged she needed the chance to catch her breath and the effort of moving made her breathless. However, the panel concluded that it was her muscular response to movement that was impacting on her daily life, rather than breathlessness. We have considered whether its decision was in line with the evidence.
23. We can see from the records Miss B has a persistent cough, but rarely became wheezy. She had a chesty cough in January 2023 which required a course of antibiotics for just over a week.
24. The records also show that at the time of the 2023 assessment, Miss B would become breathless when she was mobilising with her frame. She would need to stop to regain her breath. Our adviser said her shortness of breath does appear to have affected her when engaged in daily living activities such as walking to and from the toilet, not just her muscular response to movement. We can see she used an inhaler to help settle her breathing if it had not improved after a short period of rest.
25. So the evidence indicates Miss B had needs in this domain which went beyond those in the low descriptor. They appear to be in line with the moderate descriptor. It does not appear the IRP properly considered this domain in line with the DST.
26. However, we do not think that if the IRP had weighted this domain higher that it would have changed the overall decision. We set out why later.
The four key characteristics
77.The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. This is called the four key characteristics – the nature, intensity, complexity and unpredictability of their needs. This test is used to establish if the quantity or type of a person’s care needs are more than what the local authority can provide. This indicates they have a primary health need, which in turn indicates they are eligible for CHC. This is not a reconsideration of a person’s specific needs in each domain.
78.The National Framework sets out questions for the IRP to consider helping establish 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 are not meant to be strictly applied and are there to guide the IRP’s considerations. It does not have to consider them exactly as laid out in PG3. We use these questions when we are looking at whether the IRP properly considered the key characteristics of a person’s needs. We have also considered what the IRP did with regards to our view on the breathing domain, as we described above.
27. Miss B disputes the IRP's decision on each of the four key characteristics. She says it did not consider the interactions of the domains in each characteristic sufficiently and its misunderstanding of cerebral palsy meant it understated the extent of her needs.
Nature
28. For the nature characteristic, the National Framework says the IRP must consider 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.
29. Miss B says the IRP did not consider properly the impact cerebral palsy has on her breathing. She says it concentrated on the use of her inhaler and the need for regular rests when getting dressed, undressed or washed. But she says timely and skilled interventions are needed for her continence issues, for example. She is in a wheelchair, so there can also be impacts on her health if this is not dealt with properly. She says her needs were mostly health and not social, so the IRP decision was incorrect and not in line with the Care Act 2014.
30. We asked our adviser about this. They said the IRP described the nature of Miss B’s presentation and needs in depth in its report. Our adviser said the records show carers give Miss B’s care through structured care plans. They help her to meet daily living activities. Our adviser said the records showed the majority of Miss B’s care needs are of the type that can be met by local authority services as defined by the Care Act 2014. These include managing and maintaining her nutrition, hygiene and toilet needs and making sure she is appropriately clothed and able to make use of a safe home environment.
31. Our adviser also said Miss B had some shortness of breath when mobilising and would have to stop to settle her breathing. But this would not indicate a primary health need in itself.
32. We can see the IRP considered how Miss B’s needs interacted in its report. It considered her breathing needs and described her cerebral palsy diagnosis and resulting needs. We can also see it described her continence needs in detail.
33. We appreciate the nature of Miss B’s needs is difficult and upsetting for her, When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs as robustly as we would expect. We think the IRP acted in line with the National Framework and DST when making its decision on the nature of Miss B’s needs.
Intensity
34. The National Framework says the intensity characteristic is about both the extent (‘quantity’) and severity (‘degree’) of the needs and the support required to meet them, including the need for sustained or ongoing care (‘continuity’).
35. Miss B says the key questions for this characteristic did not flow through to the IRP decision. She says it did not give any real reasoning for its decision given, as she needed nursing care because of her illnesses.
36. As we said above, IRPs do not have to consider exactly the key questions suggested in the National Framework for each characteristic but can use them as guides. For the intensity characteristic these are:
• 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?
37. We can see from its report, the IRP described the severity of Miss B’s needs and the type of interventions required for these. This included the length of time and number of carers needed for her care and for other care interventions. We can see its consideration of Miss B’s needs in this domain was based on points suggested by the key questions.
38. We also asked our adviser about this. They said the IRP had described in detail intensity of Miss B’s presentation, needs and the skill needed to manage these. They said the records did not indicate these were intense to manage.
39. We appreciate Miss B feels her needs are intense. Receiving nursing care does not mean someone has a primary health need. We can see the IRP considered the care Miss B was getting. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs as robustly as we would expect. We think the IRP acted in line with the National Framework and DST when making its decision on the intensity of Miss B’s needs.
Complexity
40. The National Framework says the complexity characteristic is concerned with how the person’s needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage their care. 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.
41. Miss B says staff needed to know totality of her care plan and respond effectively at any time. She says the IRP did not consider sufficiently that staff had to be specifically trained for what happens when, for example, her leg pops out of joint – this is a complex action. She says her carers have been specifically trained on physiotherapy, including her exercises, by a physiotherapist to meet her needs.
42. We asked our adviser about this. They said there were interactions between Miss B’s conditions which gave rise to care needs. They said the IRP described these and how her care needs were met. We can see from the report the IRP considered how her needs interacted and what was in her care plan, including when her shoulder and hip could become displaced. The plan also says carers should seek urgent medical help should these happen. It said her carers had to be familiar with her care plan and received the relevant training on this as would be expected in a care setting. It said the tasks carers needed to do were not complex or difficult to perform and followed clear strategies.
43. We understand Miss B’s concerns about her carers needing training and her worries about her leg joints popping out. We have not seen indications her needs were complex for her carers to manage. There are no indications she needed specialised medical support or carers or that her needs were beyond what the local authority could provide. The IRP appears to have described her needs well here. We think it acted in line with the National Framework and DST when it considered the complexity characteristic.
Unpredictability
44. The National Framework says the unpredictability characteristic is about the degree to which needs fluctuate and thereby cause challenges in their management. It does not mean whether everything a patient does can be predicted. Therefore, whether a specific individual event can be anticipated is not in itself an indication of whether a person has a primary health need.
45. We asked our adviser about this. They said Miss B’s care was routine and she did not have sudden changes or fluctuations in her daily life. We can see from the records her care had been stable over the previous year and her care plans had not needed frequent amendments. We have not seen evidence to indicate her needs were unpredictable.
46. The IRP appears to have described her needs here in line with what the evidence shows. We have not seen indications of the things we would expect to see which would have indicated to the IRP that Miss B’s needs were unpredictable. When someone has unpredictable needs, we would expect to see frequent or sudden changes in their care plans, or frequent need for carers to intervene outside of the care plan. There is no indication this was the case for Miss B. The records indicate her carers were aware of her falls risk and that she could be aggressive. The IRP considered this. When we weigh up the evidence, we think the IRP acted in line with the National Framework and DST when making its decision on this characteristic.
47. We understand why Miss B thinks she had a primary health need at the time the ICB assessed her. She has a number of needs which required 24-hour care. When we weigh up the evidence, we think the IRP report explained her needs and how they interacted in detail for each characteristic. The report considered the questions for each characteristic as we would expect it to and provided a detailed explanation of why it made its decision. We have not seen any indications her needs or care plan to deal with these changed suddenly or unexpectedly or that her care was particularly difficult to manage.
48. We have thought about whether it would have made a difference to the overall eligibility decision if the IRP had weighted the breathing domain as moderate. A weighting of moderate would not normally lead to an IRP changing its overall eligibility decision, but it can have an impact on this.
49. The individual domain weightings only confirm if someone has a primary health need if one of these is weighted as being a priority need, or two as severe. Miss B had no domain weightings higher than high. Another moderate weighting would not have led to the IRP automatically finding her eligible for CHC based on the domain weightings alone. We have therefore looked at how it evaluated her breathing needs in that area when it considered the four key characteristics.
50. We can see the IRP considered Miss B’s breathing needs when looking at the nature characteristic. The records show it considered how her needs interacted and the level of care she needed across the four key characteristics. This included the amount and extent of the healthcare and other support she needed for breathing needs. The records show the IRP considered her care arrangements and plans and the types of care she needed. We can see her representative raised points for each characteristic which it felt showed Miss B did have a primary health need and that the IRP reviewed these points carefully.
51. When we weigh up the evidence, we think the IRP’s consideration of Miss B’s breathing needs within the four key characteristics accurately captured the care she needed for these. We appreciate this is an aspect of her care which was very concerning for Miss B. We have not seen evidence which indicates it misunderstood the nature of her cerebral palsy and her resulting needs. It appears the IRP reached its decision with regards to the four key characteristics in line with the National Framework. And we do not think a change in the weighting of the breathing domain would have changed the overall decision.
Well managed needs principle
52. Miss B says the IRP did not consider this as it should. In particular, she says her behaviour and other needs only appeared to be settled because she had experienced carers who had worked with her for some time, but her needs had not changed.
53. The National Framework (paragraph 63) says, ‘care must be taken not to misinterpret a situation where the individual’s care needs are being well-managed as being a reduction in their actual day-to-day care needs.’ It also says (PG31) that an accurate picture of a person’s needs is required, including a proportionate consideration of the level of care they received. Needs should be considered at the optimum time, when a person is settled and their needs are known (paragraph 108).
54. We can see from the records Miss B needed to be looked after in a care home. This in itself does not mean her needs were being disguised because they were so well managed. We can also see the IRP did consider how well Miss B’s needs were managed, which it needed to in line with the National Framework. It decided on a weighting of moderate rather than low in the psychological and emotional needs domain because of this and discussed it as part of the behaviour domain (where it agreed with Miss B her needs were high). We can see it considered the question of well managed needs when looking at the four key characteristics.
55. We asked our adviser about this. They said the records showed Miss B needed help from carers, but the evidence did not indicate they were so well managed as to disguise her needs. They said the IRP did not understate this issue in Miss B’s case.
56. We have looked across the needs and we think the IRP based its view on what the evidence showed. We have considered if NHSE did misinterpret Miss B’s needs because of the level of care she was receiving. The IRP has detailed in its report the level of care she needed in each domain, and how the care she was receiving met this need. It had to do this to properly consider her needs. It also considered the level of skill needed to provide her care. But we understand Miss B’s concern is the IRP marginalised her needs.
57. There is no indication NHSE said any of her needs were lower than they should have been because of how the carers met them. We think the IRP weighted each domain in line with the evidence available to it. We can also see it explained the well managed needs principle clearly and how it had applied this where relevant in its report. We have seen no indication of a failing in how the IRP considered the well managed needs principle.
58. We appreciate this was a frustrating and distressing time for Miss B. She had previously been eligible for CHC so it was upsetting and worrying she was no longer eligible. She had been stable for some years and the IRP needed to take this into consideration when it made its eligibility decision. We think it made its decision based on the relevant evidence.
59. We recognise how stressful and frustrating this process has been for Miss B. We hope our decision reassures her that NHSE made its decision in line with the relevant guidance and as it should.