NHS England - South - South East (Local office)

3. Mr A complains about NHS England’s (NHSE) independent review panel (IRP) upheld Sussex Integrated Care Board’s decision that his mother, Mrs C was not eligible for NHS continuing healthcare (CHC) funding for the periods 26 April 2019 to 1 August 2019 and 10 January 2020 to 10 January 2023. He disagrees with its consideration of the nature, intensity and complexity characteristics.

4. Mr A says as a result his mother was not eligible for CHC funding.

5. Mr A wants NHSE to reconsider its decision.

6. On 30 January 2024 the ICB completed a decision support tool (DST). A DST is a document which helps to record evidence of an individual’s care needs to determine if they qualify for CHC funding.

7. The DST found Mrs C was not eligible for NHS continuing healthcare (CHC) funding for the periods 26 April 2019 to 1 August 2019 and 10 January 2020 to 10 January 2023. The period 2 August 2019 and 9 January 2020 was excluded as Mrs C lived with her family during this period.

8. On 26 July 2024 Mr A via his representative appealed the decision. On 1 October 2024 a local resolution meeting took place. On 29 October 2024 sent its outcome letter.

9. On 27 March 2025 Mr A requested an IRP. On 10 July 2025 an IRP took place. The IRP upheld the ICB’s decision. On 21 August 2025 NHSE sent Mr A its outcome letter.

12. 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 indications that something has gone wrong when NHSE made its decision.

13. Before we discuss our decision, we would like to explain some information about how an IRP reaches its decision and what this means for how we look at it. NHSE guidance says an individual receiving care, or their representative may apply for an IRP to review a ICB’s decision to decline CHC funding.

14. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. 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 (July 2022) when it considered whether Mrs C 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 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.

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 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.

17. To help us reach a decision, we have carefully considered the information Mr A provided alongside the file the IRP considered. 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. Mr A has told us he disagrees with its consideration of the nature, intensity and complexity characteristics.

Four key characteristics

18. The IRP applies an eligibility test to help it make a decision about an individual’s CHC eligibility. This is what we refer to as the ‘primary health need’ test. 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 an individual’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.

19. 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 properly considered the four key characteristics of Mrs C’s needs.

20. Mr A has told us he disagrees with the IRP’s consideration of the nature, intensity and complexity key characteristics. We have therefore looked at how the IRP considered these characteristics.

Nature

21. Section 3.3 of the practice guidance within the National Framework describes nature as ‘the characteristics of both the individual’s needs and the interventions required to meet those needs’.

22. In line with paragraph 59 of the National Framework, in the IRP’s consideration of nature we would expect to see analysis of: ‘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’.

23. Section 3.3 also lists questions prompts for factors that should be considered (though not specifically and individually answered) for the nature characteristic:

• 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?

24. Mr A disagrees with the IRP’s consideration of the nature characteristic. He says the IRP did not consider that his mother would refuse her pain medication due to the side effects it caused her and no suitable alternative pain relief was prescribed.

25. The IRP report shows the panel considered Mrs C’s need and how this impacted her. Its decision in the nature indicator is clear and presents a full picture of Mrs C’s needs were met. The IRP focussed on Mrs C’s individual needs rather than her diagnosed medical conditions.

26. The IRP said Mrs C had many needs which were exacerbated by her intermittent refusal of aspects of her care and this included taking of her medication. The IRP acknowledged there were some fluctuations in her needs across the period, it said there had been increases in level of needs at certain times, but she also had a decrease in some needs in the nutrition and skin domains.

27. The IRP said Mrs C’s needs could be met in a timely manner. It acknowledged at times staff would have take a retreat and return approach given Mrs C’s approach to her care. Mrs C required the support of trained cares who would offer calming and informative directions. The IRP acknowledged there were times when Mrs C had evidence of skin breakdown and required interventions from the community nurse and on occasion advice was sought from tissue viability nurse (TVN). It said interventions were successful.

28. The IRP acknowledged the family’s view that it felt Mrs C’s pain was not well managed and had led to her needs increasing in respect of her pain management. The IRP said there was clear evidence Mrs C had made a conscious decision to refuse pain relieve. She would refuse PRN (as required) paracetamol and the prescribed morphine patch. It acknowledged her decision resulted in her being in pain. It said this was her choice which impacted on the level of need. The IRP said it had considered her needs given she had decided not to take pain relieving medication. It said the GP had prescribed her pain intermittent and not constant. The IRP said Mrs C pain had some impact on her day to day living but generally carers could meet her day-to-day needs. Her carers did not require specialist knowledge to meet her needs.

29. The IRP said overall Mrs C’s care was met by suitably qualified carers with the support of community nurses. She also had access to NHS universal services. The IRP said in combination these services could assess, plan, evaluate and implement a package of care to meet Mrs C’s needs.

30. We understand how challenging it is to witness a parent in pain. We think the IRP considered all the relevant factors, including the family’s evidence, when it decided the nature of Mrs C’s needs did not indicate she had a primary health need. We are satisfied it acted in line with the National Framework.

Intensity

31. Section 3.4 of the practice guidance within the National Framework says intensity ‘is about the quantity, severity and continuity of needs.’

32. In line with the National Framework, we would expect the IRP’s consideration of the intensity indicator to ‘relate 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’)’.

33. Section 3.4 also lists questions prompts for the intensity characteristic:

• 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 the needs over several domains?

34. Mr A disagrees with the IRP’s consideration of the intensity characteristics. Mr A says the IRP set the bar too high when considering this characteristic. Mr A disagreed with the IRP’s comments that the involvement of his mother’s GP and other health services including the TVN did not exceed reasonable expectations for the periods under the review.

35. We understand Mr A thinks the IRP set the bar too high when considering this characteristic. We can see the IRP looked at the right things. It had a discussion about the intensity of Mrs C’s needs. The IRP acknowledged Mrs C had a number of needs and required support with her skin integrity, mobility related pain, pain management and her psychological needs.

36. The IRP said at times where Mrs C had loss of skin integrity she needed intervention from the community nurse and tissue viability nurse. The IRP said these interventions were not outside of those professionals’ skill set. The IRP acknowledged Mrs C refused PRN paracetamol and morphine patches and this decision impacted her pain levels. The IRP reviewed the GP records and said despite the recommended intervention the GP recognised Mrs C was tolerating the pain.

37. The IRP said Mrs C’s needs were met with planned care interventions by carers over a 24 hour period. She had input from community nurses and TVN. It acknowledged her carers needed understanding of caring for individuals with a variety of needs. She needed one to two carers to provide and deliver her care. Care staff did not require additional skills or specialist qualifications to provide care to Mrs C. Her care could be provided by the support of the community nurses and her GP. The oversight from her GP and the TVN did not exceed reasonable expectations during the review period.

38. We think the IRP considered all the relevant factors when it decided the intensity of Mrs C’s need did not suggest he had a primary health need. We are satisfied it acted in line with the National Framework.

Complexity

39. Section 3.5 of the practice guidance within the National Framework says complexity ‘is about the level of skill/knowledge required to address an individual need or the range of needs and the interface between two or more needs.’

40. In line with the National Framework, in the IRP’s consideration of complexity indicator we would expect to see analysis of: ‘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.’

41. Section 3.5 lists the question prompts for the complexity indicator:

• How difficult is it to manage the need?

• 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 needs?

• How does the individual’s response to their condition make it more difficult to provide adequate support?

42. Mr A disagrees with the IRP’s consideration of the complexity characteristic. Mr A again says the IRP set the bar too high when considering the complexity of his mother’s needs as it considered whether there was a need for ‘ongoing reactive clinical intervention’. He says the IRP should have solely considered whether increased skill was required to care for his mother due to the interaction of her needs.

43. We can see the IRP looked at the available evidence. Mr A and his representative’s gave written and verbal evidence for the IRP to consider. The IRP had a discussion about the complexity of Mrs C’s needs. It said there was interactions between Mrs C’s needs across the care domains. It recognised there was interaction of her needs because of her pain, low mood and skin integrity with her needs in the continence and mobility domains. The IRP acknowledged her needs did interact and impact each other but it did not make it more difficult for her carers to treat and provider her with care. It did not require any increased skills or specialist qualifications to provide her with care. The IRP recognised Mrs C’s care was provided by unregistered staff with support from community nurses, GP and on occasion a TVN.

44. The IRP acknowledged Mrs C’s refusal to accept care interventions made it more difficult for her care to be provided. However, it said the evidence from the GP and care records show her care was delivered despite this in a timely manner. The IRP found no evidence Mrs C’s care was problematic to provide and could be provided by routine care with support from community nurses. Her care needs were met with routine planning and interventions as part of an agreed care plan. The IRP found no evidence Mrs C’s care plan changed because of the complexity of her needs. The IRP did not identify Mrs C required ongoing reactive clinical intervention to meet her daily needs or her condition meant her care was problematic.

45. We recognise Mrs C needed care to manage her needs. But the complexity characteristic is concerned with whether they needed knowledge or skills beyond what would be expected of a care professional to do that. There is no indication that was the case for Mrs C. We know she needed cares to provide her with care. But her needs were straightforward. Although there was interaction of her needs in the care domains, there was no complexity in them.

46. We think the IRP considered all the relevant factors, including Mr A’s evidence when it decided the complexity of Mrs C’s need did not suggest she had a primary health need. We are satisfied it acted in line with the National Framework.

Well managed needs principle

47. Mr A says the IRP marginalised his mother’s needs.

48. Paragraph 208 of the National Framework says:

‘When undertaking NHS Continuing Healthcare reviews, 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. This may be particularly relevant where the individual has a progressive illness or condition, although it is recognised that with some progressive conditions care needs can reduce over time.’

49. We can see the IRP took into account Mr A’s and his representatives evidence about Mrs C’s needs. There is no evidence it marginalised her care needs. The IRP described how care staff managed her drug therapies, skin, behaviour, continence and mobility needs to ensure she was safe, which it must do to make a decision about the four key characteristics. It detailed how Mrs C’s care could be met with care and monitoring. It did not downplay or suggest any need did not exist because of how it was managed. The report shows the IRP’s application of the well managed principle was supported by the evidence available and in line with the National Framework.

Summary

50. The IRP showed it applied the National Framework when it considered Mr C’s CHC eligibility.

51. We recognise Mr A’s account and that he disagrees with the IRP’s decision. We understand how distressing it is to witness a parent’s health and wellbeing become more difficult to manage. We do not wish to take away from his account or what he has told us about his mother’s needs.

1. We have carefully considered Mr A’s complaint about how NHS England (NHSE) looked at his NHS continuing healthcare (CHC) claim for his mother, Mrs C. We have seen no indication that anything went seriously wrong when NHSE made its decision.

2. We are sorry to hear are sorry to hear about Mr A’s concerns. We understand how the CHC process is a frustrating and a lengthy process. We have reviewed the relevant evidence and are satisfied NHSE made its decision in line with the National Framework.