NHS England

3. Mr B complains NHSE’s IRP upheld the clinical commissioning group’s (the CCG) decision that Mrs B was not eligible for NHS funded CHC when it assessed her care needs between 19 September 2013 and 13 November 2014. Mr B says the IRP did not properly consider the care home notes, GP records and a deprivation of liberty safeguards (DOLS) statement dated May 2014 where a GP described his mother’s very complex physical and mental health needs. Mr B feels the IRP did not do this when looking at the nature, complexity, intensity and unpredictability key characteristics.

4. Mr B says his mother should have been entitled to CHC funding to meet the cost of her care. Her estate has been financially disadvantaged because she had to pay for her own care. NHSE’s decision caused distress and frustration to the family because it ignored crucial evidence.

5. Mr B wants NHSE to reconsider the IRP’s decision.

6. Mrs B had dementia and was cared for in a nursing home from March 2003. She died in November 2014.

7. Mrs B had CHC funding from 2009. CHC is a package of care for adults who have a primary health need and is arranged and funded by the NHS. Her funding stopped in 2013 after a review found she was no longer eligible.

8. A person or their representative can ask for a retrospective review if they think they should have been eligible for CHC. Mrs B’s family asked the CCG to do that. It did a retrospective assessment on 25 April 2020 and found she was not eligible for CHC between 19 September 2013 and 13 November 2014. Mr B appealed the decision and the CCG changed its decision for the very end of the period. It found Mrs B eligible for the period 4 to 13 November 2014.

9. Mr B appealed to NHSE. It held an IRP meeting on 3 November 2022. An IRP is made up of health and social care professionals. It decides whether the CCG correctly applied the National Framework for CHC when making its decision. It agreed Mrs B was not eligible for CHC between 19 September 2013 and 13 November 2014. It sent its outcome letter on 13 December 2022.

12. Before we decide if we should do a detailed investigation of 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 have not seen any signs that something went wrong when NHSE made its decision.

13. It is our role to decide whether NHSE’s IRP acted in line with the National Framework when it considered whether Mrs B was eligible for CHC. The National Framework sets out the principles and processes CCGs and NHSE should follow when considering if someone is eligible for CHC. The 2018 version of the National Framework was in place during the period the CCG considered. It was revised in 2022 when the IRP considered it. The relevant detail is the same in both versions.

14. 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 find the IRP did not follow the National Framework when it made its decision.

15. The IRP reviews if the CCG should have found the person to have a primary health need and be eligible for CHC. It also reviews the CCG’s procedures when it was coming to its eligibility decision, to make sure it was acting in line with the National Framework. If the IRP does find the CCG made a mistake, it can: • recommend the CCG reconsiders if the person had a primary health need • recommend the CCG addresses any procedural faults the IRP finds.

16. When we look at a complaint about an IRP, we consider if it considered all the relevant information when it made its eligibility decision.

17. Mr B says the IRP did not fully consider the evidence available, particularly the DOLS report that records levels of nature, intensity, complexity and unpredictably. He says this was previously recognised when his mother was found eligible for CHC in 2009.

18. Mr B accepts a DOLS report does not in itself lead to CHC eligibility. He believes the IRP dismissed the evidence simply because it was not written for CHC purposes. He highlights that very little evidence used to assess an individual’s CHC eligibility is written for that purpose. He feels this was clearly a failure to gather all the evidence available about his mother’s significant nursing needs. He says her needs had not reduced since she had been found eligible for CHC in 2009, as one would expect with the degenerative effects of Alzheimer’s type dementia. He also says the DOLS report included relevant information about her complex physical and mental health needs. He believes these point to a level of need that exceeds the threshold for CHC eligibility.

19. The IRP report said it reviewed the DOLS statement in detail and decided that the evidence in the DOLS statement was fully consistent with the evidence it used to establish the levels of need in the individual domains (areas of need). The IRP said the terms ‘complex’ and ‘intense’ have a specific meaning in the CHC process when compared to how these words were used in the DOLS statement.

20. The panel noted that an application of a DOLS defines that if a person lacking mental capacity is unable to leave a place of residence and is under what amounts to ‘continuous supervision’ then the threshold for DOLS is met. This would apply to most care home residents in similar situations and this in itself is not a sign of a primary health need.

21. We accept Mr B’s account of what the panel said and we can understand why this would be worrying for him. When we weigh up the evidence, we are persuaded the IRP did consider the DOLS report as we would have expected it to. The DOLS is referenced throughout the IRP report. We can see no sign that it dismissed the DOLS, or any other piece of evidence, because it was not written for the purposes of finding CHC eligibility. It did highlight that CHC looks at intensity and complexity of need in a different, specific way. This may explain why Mr B feels the IRP dismissed the DOLS. We hope he is reassured that this does not seem to have been the case.

22. We understand Mr B is unclear about the difference between the CHC definitions of intensity and complexity of need compared to the DOLS report. We next look at how the IRP considered the four key characteristics of Mrs B’s needs, including intensity and complexity.

Key characteristics

23. 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. This test is used to see if the quantity or type of a person’s care needs are more than what the local authority can provide. This would then suggest that they have a primary health need, which in turn means they are eligible for CHC.

24. The National Framework sets out questions for the IRP to consider to help it decide on a person’s level of need. They are outlined in Practice Guidance 3, ‘What is a primary health need?’ (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 decision-making. We use these questions when we are looking at whether the IRP properly considered the four key characteristics of Mrs B’s needs.

Nature

25. The National Framework says nature 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.’

26. The nature section of the IRP report gives a thorough explanation of Mrs B’s needs. It says Mrs B could not communicate and had no insight into her condition. She was entirely dependent on carers for all aspects of care. The IRP recognised she had dementia, immobility (she was cared for entirely in bed), chest infections and a range of needs that came from these.

27. The report gives an overview of the types of care Mrs B needed across each of the care domains to keep her safe and well. It noted these were routine interventions including reassuring and prompting her, a pureed diet and help with feeding, use of incontinence pads, an air mattress and barrier cream and management of her medication. Carers needed to monitor her mobility as she had contractures to her limbs (tightening of the muscles) and pillows were needed to support her legs. They had to look for non-verbal clues of what she wanted to communicate and anticipate all her needs.

28. The report said she was at low risk of choking, she had no history of urinary tract infections or medication for constipation, and there was no evidence of hallucinations or mood swings. She had a predictable pattern of behaviour, a straightforward medication regime and no history of altered states of consciousness. It saw her needs stayed stable until some changes in the last few days of her life.

29. We looked at the levels of training Mrs B’s carers needed. They were knowledgeable and well-trained in older person’s care for physical and mental health needs. We know Mrs B was unable to carry out personal care tasks independently and staff would monitor, plan and review her needs. There was a registered nurse on hand to supervise her medications and access to her GP if needed.

30. We can see the evidence supports the IRP’s conclusion. It weighed up the things the National Framework PG3 says it should. Mrs B did need care in all aspects of daily living to keep her safe from harm as Mr B says. But these were routine interventions that did not need any specific knowledge, skill or training beyond what a local authority carer could provide.

31. We think the IRP’s decision about the nature of Mrs B’s needs was in line with the guidance set out in the National Framework.

Intensity

32. The National Framework says this characteristic ‘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’)’. It sets out that assessors should look at how severe a person’s needs are, how often an intervention is needed and how long it takes, how many carers are needed and whether the care is needed over several domains.

33. The IRP’s report shows a detailed discussion about the intensity of Mrs B’s needs. It set out the domains where her needs were greatest and that the combination of these needed consistent care over a 24-hour period. It sets out that she needed continence pad changes, personal care and help to take a pureed diet. She needed monitoring for urinary tract infections. It noted Mrs B could sometimes be reluctant to accept care and made her arms rigid to prevent this.

34. The IRP noted that other than with her mobility needs, Mrs B needed no more than one carer. There were no barriers to providing the care and no interventions were particularly time-consuming. Although the IRP report does not specifically mention this under intensity, it clearly noted under nature that carers could manage Mrs B’s reluctance to accept care with prompting and reassurance. Carers managed her needs with standard care plans, oversight from a registered nurse, the GP and other health professionals when needed.

35. The IRP discussed Mr B’s concerns that the DOLS report said Mrs B had very complex physical and mental health needs. The IRP explained that the evidence in the DOLS was in line with the other evidence. It explained that there are specific definitions of intense (and complex) needs for CHC. This is what is explained in PG3 of the National Framework.

36. The evidence shows the IRP looked at the amount of time needed to provide the care, how much planning was involved and how many carers were needed. These are the considerations PG3 advises to look at. Mrs B’s care could be delivered within standard care planning. Mrs B needed care 24 hours a day, but this alone does not suggest a primary health need. At different times of the day, she needed more or less help.

37. The IRP recognised Mrs B had a level of need in many of the care domains. We note it concluded the levels of care and monitoring required in these domains were what a care home could be expected to provide and were not intense enough to suggest a primary health need. We think the records support this. There is no sign that interventions took a long time. Most of her needs were stable during the review period.

38. We think the IRP’s decision about the intensity of Mrs B’s needs was in line with the guidance set out in the National Framework.

Complexity

39. 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.’ It sets out that assessors should think about how difficult it is to manage the need and reduce the symptoms, how the need impacts on other needs, how much knowledge and skill is needed and whether the person’s response makes it difficult to provide support.

40. The IRP’s report shows a discussion about the complexity of Mrs B’s needs. It detailed that Mrs B’s care was not difficult to deliver. It recognised her cognition (understanding) affected her communication, continence and behaviour. It repeated that one of these was her willingness to accept care. But it noted this did not stop carers from providing her care, in line with the care plans. As we have mentioned before, this included reassurance and prompting.

41. The IRP thought about the knowledge and skill needed to care for Mrs B. The carers had advice and support from a speech and language therapist (SALT) about her difficulties in swallowing. This was the only specialist input they needed. Carers anticipated Mrs B’s needs by caring for her regularly and understanding her care plans.

42. Again, the report shows there was discussion about what the DOLS report says. We can understand why Mr B raised this, because it says Mrs B’s needs were complex. As we have explained, the National Framework PG3 defines how assessors should consider complexity of need in the context of CHC.

43. We think the IRP considered the factors PG3 says it should. It saw Mrs B’s care interventions were not difficult to manage and did not need specific skill or knowledge beyond what a well-trained carer would have. There were no interactions or difficulties with Mrs B’s response that meant it was more complex to provide her care. The records show her needs were not difficult to plan or provide for.

44. We think the IRP’s decision about the complexity of Mrs B’s needs was in line with the guidance set out in the National Framework.

Unpredictability

45. 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.’

46. The National Framework says as assessor should think about whether it is possible to anticipate the person’s needs, whether the needs or support change at short notice, if the person’s condition is stable, what level of knowledge or skill is needed for a spontaneous response and what would happen if the need was not met.

47. The IRP consideration of the unpredictability of Mrs B’s needs in its report is brief in comparison with the other key characteristics. But, we can see that throughout the report her needs were stable, until her breathing changed in the last few days of her life.

48. The IRP noted her health needs did not fluctuate (change), although there was a gradual deterioration consistent with her medical history and presentation. It saw carers could easily plan her care and she never needed any unexpected or short notice care. Her care interventions were based on routine care plans and risk assessments.

49. We looked at Mrs B’s care plans and records and these support the IRP’s views. We can see care staff were able to effectively meet Mrs B’s needs. The records show her care needs were stable, there was no rapid deterioration or sudden change in the level or type of support Mrs B needed. Her care routines did not change very much within the period the IRP looked at. These are key pieces of evidence in this characteristic. If a person had unpredictable needs, we would expect to see changing care plans, or carers having to take action outside of the care plans to meet those needs.

50. So while the IRP’s explanation is brief, we think its decision about the unpredictability of Mrs B’s needs was in line with the guidance set out in the National Framework.

51. Our decision does not take away from the account Mr B has given us, or the challenges his mother faced towards the end of her life. We appreciate Mrs B was reliant on the care she received. The IRP’s conclusion that her care did not suggest a primary health need seems to be in line with the National Framework.

1. We have carefully considered Mr B’s complaint about how NHS England’s (NHSE) Independent Review Panel (IRP) looked at his continuing healthcare (CHC) claim for his late mother, Mrs B. We have seen no sign that anything went seriously wrong when NHSE made its decision.

2. We are sorry to hear that the IRP’s decision caused the family distress and frustration. We have reviewed all the relevant evidence and we are satisfied that NHSE acted in line with the National Framework for CHC.