17. It is our role to decide whether NHS England’s IRP acted in line with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care when it considered whether Mrs L was eligible for CHC. The National Framework sets out the principles and processes ICBs and NHS England should follow when it considered if someone is eligible for CHC.
18. 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 clinician’s 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 think the IRP did not follow the National Framework when it made its decision.
19. 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.
20. 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. Mrs H has told us she disagreed with the IRP’s consideration of her mother’s needs in two of the domains. She also did not agree with the overall conclusion her mother was not eligible for CHC so we will look at how it considered the ‘primary health need test’.
Did the IRP clearly explain how it had reached its decision?
21. The National Framework says ICBs and NHS England should use the DST to determine a person’s CHC eligibility. The DST looks at a person’s care needs in 12 areas. These are what we refer to as the domains. Each domain is broken down into levels of need and can range from ‘no needs’ to ‘priority’. It also describes each level of need to guide clinicians. We call these the descriptors. Mrs H has complained about specific domains, and we have looked at each of them individually here.
Cognition
22. Mrs H disagreed with the IRP’s consideration in this domain. She felt her mother’s cognition needs were severe. The IRP agreed her needs were severe during the fifth period (when it said she was eligible for CHC). It disagreed with Mrs H’s view during periods one to four, where it found Mrs L’s needs were high.
23. Mrs H has told us her mother disorientated throughout the time she was in the care home. She sadly did not recognise her grandchildren and did not recognise time or where she was. She also could not assess risk.
24. The DST descriptor shows what the IRP would need to have seen during periods one to four to find Mrs L had a severe level of need in the cognition domain. A severe level of need is described as ‘unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate their basic needs and to protect them from harm, neglect or health deterioration.’
25. The IRP acknowledged it was difficult to clearly establish Mrs L’s needs throughout the period of time it looked at, as it was over 15 years before. The care home Mrs L lived in closed in 2017 and many of her records had been destroyed in line with usual information management procedures.
26. We can see the IRP did not have a clear image of Mrs L’s needs between 2007 and 2011. We cannot be critical of it for this. It had access to a limited number of her care plans, which it used to inform its decision.
27. There is limited evidence illustrating Mrs L’s needs. The IRP identified a moment in the time period when Mrs L’s needs appeared to increase. This was on 4 January 2011 when she was discharged from hospital following an epileptic seizure. The local authority later assessed Mrs L and recorded she was disorientated to time, place and person, and could not recognise her family as Mrs H described in her submissions.
28. Before Mrs L was in hospital, we can see a record she could understand basic commands. Whilst this is extremely limited evidence, we understand why the IRP ruled out a severe level of need based on this. It demonstrates Mrs L did have an awareness of a limited range of needs, which is captured in the descriptor for a high level of need.
29. There are other pieces of evidence which suggest it was more appropriate for the IRP to say Mrs L had a high level of need. Care plans in 2007 stated carers should give a full explanation to her of any interventions in order to gain consent, and recorded Mrs L could understand spoken words.
30. We understand Mrs L needed a lot of support due to her needs in this domain. We do not mean to downplay this with this part of our decision. Based on the very sparse evidence available, we do not think we can say the IRP made a mistake here. The evidence indicates Mrs L had a limited awareness of her needs up to the point she was discharged from hospital on 4 January 2011.
31. We think the IRP made its decision in line with the DST guidance here.
Drug therapies and medication
32. Mrs H told us she felt her mother had a high level of need in this domain throughout the period the IRP looked at. The IRP found she had a high level of need in the final period (from 4 January 2011 to 25 May 2012), and a moderate level of need for the earlier period.
33. Mrs H said her mother’s quetiapine (an antipsychotic medication) needed monitoring and its side effects managing. Her mother also needed anti-convulsant medication managing and her seizures were not controlled.
34. The DST describes a high level of need in the drug therapies and medication domain as:
‘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.’
35. The IRP has recorded its discussion about Mrs L’s needs in this domain. It rightly highlighted the difference between a moderate and a high level of need. A moderate need ‘requires administration of medication due to non-compliance, or type of medication, or route of medication.’ There are aspects of the moderate and high weighting which relate to pain management. These are not relevant in Mrs L’s case.
36. This domain is based on the Mrs L’s quetiapine treatment. This is what the IRP needed to look at and decide if it met the descriptor for a high level of need. We do not think it made a mistake here when it found the evidence suggested Mrs L’s medication regime was consistent with the moderate level of need.
37. There is very limited evidence which documents Mrs L’s needs in this domain throughout the entire period the IRP looked at. There are a number of care plan evaluations, but they are all dated after 4 January 2011, which is when Mrs L was found to be eligible for CHC. This does give some insight into how Mrs L’s carers needed to manage her quetiapine treatment.
38. The evidence shows Mrs L was prescribed a consistent amount of quetiapine, until it was stopped in 2013. It also shows an undated care plan, giving routine instructions to her carers to provide medications in-line with the prescription, and to report any side effects or changes in Mrs L’s condition to her GP.
39. We cannot see any evidence which supports the need for a specifically trained care worker to provide Mrs L’s medication. We acknowledge the care home employ a registered nurse to administer all medications. This was the care home’s own policy, rather than due to each patient’s individual need.
40. This does not take away from how reliant Mrs L was on her medication regime, and the carers who administered it for her. We appreciate there is extremely limited evidence portraying Mrs L’s needs up to January 2011, and if there was more it may give a different picture of what her medication needs were. The IRP can only make a decision based on the evidence available to it, and based on this, we do not think we can say it made a mistake here.
Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?
41. The IRP also 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. 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.
42. The National Framework sets out questions for the IRP to consider to help 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 it provides are not meant to be strictly applied and are there to guide the IRP’s considerations. We use these questions when we are looking at whether the IRP considered the four key characteristics of Mrs L’s needs.
43. Mrs H has told us she disagrees with the IRP’s consideration of each of the four key characteristics.
Nature
44. The National Framework says this characteristic should ‘describe the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.’
45. Mrs H has told us her mother’s needs were of the nature of a primary health need. The IRP disagreed with her, and explained why it felt Mrs L did not have a primary health need in the first four periods it looked at. We do not think it made a mistake here.
46. The IRP took information from its discussions about each domain and recognised the level of skill needed to keep Mrs L safe and well. It found carers could look after her with the support of community services, such as her GP and district nurses.
47. We acknowledge there were changes to Mrs L’s needs throughout the first four periods the IRP looked at, and the IRP recognised this too. It recognised Mrs L potentially had a transient ischaemic attack (‘mini stroke’)and was prescribed medication to manage this. It also saw where Mrs L’s skin became at risk of breaking down. The IRP considered if these changes impacted the nature of her needs, and had PG3 in mind. We do not think it made a mistake when it found the changes did not indicate a primary health need.
48. We do not doubt Mrs L’s carers needed to be dedicated to keep her safe and well, and our decision on this complaint should not take away from this. When we have looked at the limited care plans available to us, we cannot see her carers needed any specialist skills above what they would have been expected to provide. As we have discussed, Mrs L did receive her medication from a registered nurse consistent with the care home’s own policy.
49. We think the IRP acted in line with the guidance set out in PG3 of the National Framework when it considered the nature of Mrs L’s needs. It had regard for the questions PG3 provides. We do not think it made a mistake here.
Intensity
50. The National Framework says this characteristic ‘relates to both 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’)’.
51. The report shows the IRP looked at the intensity of Mrs L’s needs, and whether they were evidence of a primary health need. It started by summarising her needs in each domain, and whether each one alone demonstrated intensity. It concisely considered the combination of Mrs L’s needs and acknowledged she had needs across the care domains. It concluded her needs could be routinely met by her dedicated team of care workers who were familiar with her condition.
52. The IRP did comment on how often Mrs L needed input from her care workers, determining the care home did not need to employ additional staff members. It looked at how long the care workers needed to spend with her to keep her safe. The IRP did not see Mrs L needed constant supervision, but it acknowledged she needed the safety and security of a 24-hour care environment. It also saw most interventions could be provided by one carer.
53. The IRP found the intensity of Mrs L’s needs were not of an intensity which demonstrated a primary health need. We have looked at the information in the report and we cannot see it made a mistake here. We think it followed the National Framework.
Complexity
54. The National Framework says 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.’
55. Mrs H said her mother’s carers needed to respond promptly to her seizures, would need to provide a skilled intervention to transfer her and to manage her communication difficulties.
56. The report shows the IRP looked at how difficult it was for Mrs L’s carers to manage her needs. It explained the limited evidence shows her care needs could be met by care staff who were familiar with her condition, and it acknowledged they benefitted from the oversight of community services.
57. The report provides an evaluation proportionate to the evidence available of how Mrs L’s needs interacted with each other and whether this made it more difficult for her care workers to keep her safe. It acknowledged an interaction between cognition, communication, nutrition and continence. It found the interaction between these domains could be managed through social care rather than nursing interventions. We think this is supported by the evidence available to us in Mrs L’s care plans.
58. We can see the IRP considered all the points raised in PG3. It has provided a consideration of this part of the primary health need test. We think the IRP followed the National Framework here, we cannot see it made a mistake.
Unpredictability
59. The final key characteristic of a person’s level of need is unpredictability. The National Framework defines it as ‘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. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.’
60. Mrs H has told us her mother’s needs were unpredictable as her carers could not predict when she would have a seizure. We appreciate her views here, and acknowledge Mrs L was entirely reliant on the care she received across the 24-hour period.
61. This key characteristic relates to whether care workers can anticipate when a care need might arise. It looks at whether the level of need changes and whether the person is unstable. It also looks at whether a skilled response is needed at very short notice and how much monitoring is required.
62. The IRP appears to have had this guidance in mind when it looked at the unpredictability of Mrs L’s needs. It saw the care plans available did not appear to need regularly changing, which would be a strong indication of unpredictability.
63. It acknowledged Mrs L’s care workers would need to react to her having a seizure, and recognised these could be categorised as unpredictable. Importantly, it recognised these could be managed in line with a pre-planned, clear response. The fact a seizure could not be predicted is not evidence on ‘unpredictability’ itself. The carers did not know when it would happen, by they knew there were times they would need to provide this care and how to do that. The care workers did not need to employ spontaneous, skilled responses to manage this need for Mrs L.
64. We appreciate Mrs L was entirely dependent on the care she received, and we do not wish to undermine the challenges her care staff faced in meeting her needs. We fully understand why Mrs H asked us to look at this and we can see why she highlighted the points she did. We do not wish to take away from this with our decision.