2. Mr F complains that NHS England’s (NHSE) Independent Review Panel (IRP) upheld Nottingham and Nottinghamshire CCG’s (now ICB) decision that his brother, Mr L, was not eligible for NHS continuing healthcare (CHC) funding for the period 21 March 2005 – 16 October 2007. Specifically, he disputes how the IRP considered the four key characteristics.
3. Mr F says his brother had a primary health need and this had a financial impact on his estate.
4. Mr F would like NHSE to reconsider its decision.
5. The following is intended to be a brief background to the events.
6. Continuing healthcare (CHC) is a package of health and social care that is funded by the NHS for people who have a primary health need. ICBs manage CHC and decide if a person has a primary health need by doing a CHC assessment. A multidisciplinary team will use a decision support tool (DST) which 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 weightings that range from ‘no needs’ to ‘priority’. The DST describes each weighting to guide clinicians. We call these the descriptors.
7. There are also four key indicators used to assess the overall needs of someone to determine if they have a primary health need, nature, intensity, complexity and unpredictability.
8. If an ICB decides the person does not and is therefore not eligible for CHC, the person of their representative can appeal this decision. This is first to the ICB and then to NHS England, which may decide to arrange an independent review panel (IRP) to consider the ICB’s decision.
9. In 2003, Mr L had a fall requiring surgery and made the decision to move to a nursing home. On 21 March 2005, he moved to a second nursing home.
10. On 16 October 2007 he was found eligible for CHC funding and was eligible until he died on 31 December 2008. Mr F applied for a retrospective CHC appeal on 10 September 2012. Due to lack of records, the period of review was from 21 March 2005 until 16 October 2007.
11. A multi-disciplinary team (MDT) did an assessment on 6 December 2021 and recommended Mr L was not eligible for CHC funding. The ICB ratified this recommendation. The family appealed the decision. The ICB upheld its decision on 24 March 2022.
12. The family appealed again to NHS England. It held an independent review panel (IRP) meeting on 30 August 2024. NHS England decided Mr L was ineligible. It sent its decision letter on 18 September 2024.
15. Before we decide if we should conduct 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 found any indication that something has gone wrong when NHSE made its decision.
16. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide if the IRP made its decision in line with the National Framework. The National Framework sets out the principles and processes CCGs (now ICBs) and NHS England should follow when considering if someone is eligible for CHC.
17. We cannot question 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.
18. 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 was coming to 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.
19. 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.
20. The IRP 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.
21. 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 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 properly considered the key characteristics of a person’s needs.
22. Mr F has told us he specifically disagrees with the IRP’s consideration of the four key characteristics, specifically nature, intensity and complexity. He also disagrees with how the needs have been considered in combination.
Nature 23. 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.’
24. Section 3.3 also lists questions prompts for factors that should be considered (though not specifically and individually answered) for the nature indicator: • 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?
25. Mr F explained the IRP’s nature consideration was insufficient to show there was an analysis of Mr L’s needs or that it considered them in totality, rather than in separate domains. He says the nature consideration has reiterated the needs in turn, and this is not a complete analysis.
26. The IRP set out that Mr L needed care across a 24-hour period. We recognise what Mr F has told us and agree the IRP could have described Mr L’s needs in more detail, and more holistically in this specific section.
27. We understand Mr F therefore has concerns the IRP didn’t consider Mr L’s needs in totality. We can see the IRP went on to do this from page 21 of the report, and this includes further information about the nature of Mr L’s condition, and the overall effect on him. We are therefore satisfied the nature of Mr L’s condition was robustly considered, with reference to the prompts in section 3. This reference to each individual domain in the nature section, alongside the section from page 21 shows there was thorough consideration of the types of interventions Mr F needed, if particular skill was needed and the overall impact on him.
28. As set out previously, the IRP could have set this out more clearly within the nature section. Overall, we are reassured the particular characteristics of Mr L’s needs were thoroughly considered, and this was in line with the National Framework.
29. We have also carefully reviewed the records. The records support that generally the interventions Mr F needed were routine, and were mostly for assistance with daily living. The evidence does not show staff needed any specific knowledge or specialised training beyond that which a local authority carer could be expected to provide provide. Generally, Mr L’s care plans showed him to be stable, and not deteriorating at that point in time.
30. We are mindful Mr L did need access to constant support and supervision to keep him safe. We do not wish to detract from the support Mr F needed. We think the IRP’s decision about the nature of Mr L’s needs was in line with the guidance set out in the National Framework.
Intensity 31. 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.
32. Mr F is concerned the IRP’s consideration is brief and it has marginalised Mr L’s needs. He says the IRP has not given consideration to the intensity of Mr L’s pain.
33. The IRP carefully thought about the types of interventions Mr L needed. It noted he needed help with transfers, continence, cutting up food, dispensing his medication, catheterisation and changing dressings. It noted the GP provided routine support, with input occasionally from TVN and the dietician.
34. It acknowledged carers needed to have an understanding of the needs associated with cerebral palsy and an insight into the frustrations Mr L experienced. It recognised staff needed to be patient and attentive, and to help him if he was unsettled, but concluded overall this did not demonstrate intensity.
35. The records are supportive of this. We can see that care could generally be delivered by one or two members of staff. Mr L did not need frequent protracted interventions, or interventions outside of his care planning. There is no indication interventions took a long time, or presented as difficult to deliver.
36. There were no significant barriers to care being delivered. The support and interventions were managed successfully, with oversight from the GP, TVN and dietician when needed.
37. We understand Mr F says the IRP did not consider Mr L’s pain. We think in the further paragraph, which is an overview of the four key characteristics, the IRP has clearly thought about Mr L’s pain in detail. It has thought about Mr L’s lifelong condition and the pain that came with it. There is evidence the IRP took this into account and decided this did not evidence intensity.
38. We think the IRP’s decision about the intensity of Mr L’s needs was in line with the guidance set out in the National Framework.
Complexity 39. The National Framework says this 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 alleviate the symptoms, how the needs impact on each other, how much knowledge and skill is needed, and whether the person’s response makes it difficult to provide support.
40. Mr F explained the IRP’s decision has clearly been influenced by the care providers ability to manage the needs and the setting of care. He also thinks the information regarding complexity is contradictory. This is because earlier in the report it acknowledged Mr L’s continence care was beyond routine, and he needed the involvement of TVN. He says the complexity around Mr L’s pain was not explored.
41. The IRP said Mr L lived with pain, and it considered how this impacted other domains. It explained he was mostly compliant with care, acknowledging there were occasions where he could become frustrated.
42. The IRP thought about interactions between care domains in relation to Mr L’s needs. It considered how difficult it was to manage his needs, and if they were problematic.
43. There is no indication Mr L’s care was problematic to manage. His needs could be planned for and anticipated. His care could generally be delivered in line with his care plans which regularly remained unchanged. He did not have any complex care plans in place.
44. The records are supportive that Mr L’s condition was mostly stable. We are mindful he could have episodes where he may shout or become frustrated, alongside his pain. There is documentation to support this was managed with analgesia, and he would generally respond well to reassurance. The evidence does not suggest this created intense difficulty to meet. There is also documentation to show Mr L was often settled, he enjoyed going out and regularly partook in activities and social events. He was mostly compliant with all interventions.
45. As set out above, we are reassured that when the four key indicators were considered together, Mr L’s pain has been carefully considered. The report supports he did experience pain, but this was able to be planned for and managed. It acknowledged Mr L’s continence care could be problematic but this was not outside of what is expected to be provided in a care home. The IRP did not think there was an increased skill, complexity or difficulty needed to manage these things.
46. We are thankful for what Mr F has told us and can understand his views. We recognise Mr L did need constant care and support, and do not dispute this. We are reassured these were not complex care interventions, beyond what would be expected of a care professional.
47. We think the IRP’s decision about the complexity of Mr L’s needs was in line with the guidance set out in the National Framework.
48. We have considered if the IRP looked at the appropriate evidence when reaching a view the ICB’s decision was sound. We appreciate the helpful evidence Mr F has given to us. We thank him for sharing this with us. We recognise how important his complaint is to him. We have seen NHSE acted in line with the National Framework and have therefore decided not to consider the complaint further.
1. We have carefully considered Mr F’s complaint about NHSE. We recognise how important Mr F’s complaint is to him and we thank him for taking the time to come to us. We understand how lengthy this entire process had been for him. After careful consideration, and review of all the evidence, we are satisfied NHSE acted in line with the National Framework for continuing healthcare when it made its decision.