NHS England

7. Mrs R complains NHS England’s (NHSE) independent review panel (IRP) upheld Herefordshire and Worcestershire Integrated Care Board’s (the ICB) decision her mother, Mrs G, was not eligible for NHS continuing care (CHC) from 5 July 2005 to 15 August 2007. She disagrees with how the IRP considered the four key characteristics and the well managed needs principle.

8. Mrs R also complains about how NHS England’s IRP Chair considered and responded to further evidence after the IRP.

9. Mrs R says as a result she has experienced frustration, disappointment, and distress, and her mother’s estate has been financially disadvantaged.

10. Mrs R is seeing a reconsideration of NHS England’s IRP Panel decision.

11. Following a stroke, Mrs G moved to a residential home in January 2005. She had another stroke in August 2007 and required more care. This led to a transfer to a nursing home in April 2008. Mrs G sadly died on 29 December 2009.

12. NHS continuing healthcare (CHC) funding is NHS funding provided to cover the health and social care needs of people with complex health needs.

13. The family requested a retrospective CHC checklist on 23 February 2012. This was refused by the ICB. Following a challenge by the family and involvement from the Ombudsman, the ICB agreed to complete a review in October 2019. It was carried out in 2021, due COVID-19 delays.

14. In June 2021, a Needs Portrayal Document was completed. In September 2021, three decision support tools (DST) were completed covering three separate periods:DST 1: 5 July 2005 – 5 July 2006DST 2: 5 July 2006 – 5 July 2007DST 3: 5 July 2007 – 23 April 2008

15. On 27 September 2021, multidisciplinary team (MDT) decided Mrs G did not have a primary health need. On 22 March 2022, the family appealed this decision.

16. On 28 November 2022, the ICB held a local resolution panel meeting which determined Mrs G did not have a primary health need up until 15 August 2007 but did have a primary health need and was eligible for CHC from 16 August 2007. The appeal was partially upheld.

17. This outcome was communicated to the family by letter on 5 December 2022.

18. On 1 June 2023, the family appealed this decision and requested an independent review of the ineligible period 5 July 2005 to 15 August 2007.

19. The IRP considered this case on 10 November 2023 and decided Mrs G was not eligible for CHC between 5 July 2005 to 15 August 2007.

20. Mrs R complained to the Ombudsman about the IRP decision on 21 February 2024. She complained the IRP did not consider the four key characteristics appropriately and the well-managed needs principle was not correctly considered.

21. We carried out a primary investigation and reached a decision on 7 October 2024. We found indications of failings in the way the IRP considered the evidence. We identified indications of failing as the IRP: • did not have an independent clinical adviser present • did not appear to robustly consider the four key indicators as it did not consider all the evidence presented to determine the possible presence of a primary health need in all key indicators • did not appear to appropriately interpret and apply the well-managed needs principle • did not appear to consider the evidence in the DSTs to clearly describe the events which led to Mrs G being found eligible for CHC from 16 August 2007 when her care needs did not change significantly.

22. We asked NHSE if it would be willing to consider our findings and review its decision. NHSE confirmed it would send our evidence to the Independent Chair of the IRP for a review and response.

23. On 24 October 2024, NHSE provided a further response addressing our concerns.

27. Mrs R complains about the IRP decision her mother was not eligible for CHC between 5 July 2005 and 15 August 2007 and that the IRP did not fully consider the further evidence provided to them after the decision had been made.

Clinical adviser

28. Mrs R complains there was no independent clinical adviser during the IRP.

29. We have not seen a reference to a clinical discussion following the presentation of evidence during the IRP. We have seen there was no independent clinical adviser present during the IRP. In this case the NHS representative was used as a clinical adviser.

30. The IRP Chair said they did not consider it necessary to request the presence of an independent clinical adviser for the IRP, but when the need for one arose, it is acceptable that the IRP took advantage of the panel member’s expertise.

31. We note there is no reference to a specific clinical discussion or clinical advice following the presentation of the evidence during the IRP.

32. Our adviser said it is usual practice that the IRP consists of the independent Chair, independent Social Care representative and independent NHS representative. The clinical advisor is usually separate to the panel and therefore gives independent advice to both the panel members and the individual’s representatives.

33. The National Framework, Annexe D Paragraphs 18 to 19, is quite clear in respect of the need for access to independent clinical advice during an IRP panel. It states: ‘The IRP will require access to independent clinical advice, which should take account of the range of medical, nursing and therapy needs involved in each case. Such arrangements should avoid any obvious conflicts of interest between the individual clinician(s) giving the advice and the organisation(s) from which the individual has been receiving care. The chair of the relevant IRP should consider in advance of the hearing whether, bearing in mind the nature of the case, the evidence supplied and the role of the clinical adviser set out in paragraph 19 below, there is a need for the panel to access independent clinical advice, and whether this should be in the form of attendance at the hearing or of the clinician supplying written advice.

It is the role of the clinical adviser to advise the IRP on the original clinical judgements and on how those judgements relate to the National Framework. It is not the adviser’s role to provide a second opinion on the clinical diagnosis, management or prognosis of the individual’.

34. We can see the NHS representative (who acted as a clinical adviser) provided information about the nature of Mrs G’s needs. For example, during the discussion of the continence domain, the adviser explained Mrs G had a hyper reflex bladder which was strong enough to push the catheter out. This is the only reference we can see to clinical input from the NHS representative.

35. To use the NHS Panel member as the clinical advisor is not in line with The National Framework at Annex D, paragraphs 18 to 19. The panel member is part of the panel that is to make the decision regarding eligibility of the individual and is therefore not independent of the case.

36. NHSE’s response does not align with the National Framework. The IRP did not have an independent clinical adviser on this case. We consider this is a failing. We will consider the impact of this later in our report.

Four key indicators and well managed needs principle

37. 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. It also applies the well managed needs principle. These tests are 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. The National Framework sets out questions for the IRP to consider to help establish a person’s level of need. They are outlined in the National Framework’s Practice Guidance.

38. Mrs R’s legal representatives say the IRP did not consider the four key characteristics in line with the National Framework. They also complain the IRP did not consider the well-managed needs principle in line with the National Framework, but rather it considered if staff could manage Mrs G’s needs, which it says is the incorrect test.

39. We have seen the IRP considered the four key indicators in relation to Mrs G’s needs at Section 9 of its report. The narrative is detailed and repeats much of the evidence presented on the case and is made up of summaries of the care domains. The panel found when considering the evidence heard, Mrs G did not demonstrate a primary health need.

40. Our adviser says the evidence presented appears to support the possible presence of a primary health need in all four key indicators, including repeated urinary tract infections, repeated difficulties with Mrs G’s catheter, difficulties in the medication regime required for the treatment and maintenance of her Parkinson’s condition.

41. There are several references within the decision support tools compiled that Mrs G, ‘would have been eligible for NHS-funded Nursing Care Contribution if she had gone into a Nursing Home.’

42. We have seen the district nursing service were called upon regularly to attend to Mrs G’s nursing needs. We have seen the daily records from the district nursing team from September 2005 to December 2007, and we note these visits are usually in relation to catheter care. On 10 October 2005, the records state the catheter fell out with the balloon still inflated, and the district nursing team had to catheterise. The indwelling urethral catheter ‘fell out’ on a number of occasions across the review period. This is recognised in the IRP report, for example, the report states ‘Regular bladder washouts and changing of catheter were necessary. This was managed by the District Nursing Team (DNs).’

43. The records show changes of a problematic catheter on over 33 occasions in 20 months. This equates to, on average a visit from the district nursing team more than once a month. We understand this type of catheter is usually changed every three months. When reviewing the evidence files, we note Mrs G’s physical care needs did not change significantly during the time of the period of review.

44. The IRP relied on the consideration of the management of her needs by care staff and the district nursing service.

45. We have seen the IRP did not appear to robustly consider the four key indicators as it did not consider all the evidence presented to determine the possible presence of a primary health need in the four indicators.

46. The IRP said it is tasked with reviewing the evidence, weighing it up, and reaching a decision based on its expertise and within the guidelines of the National Framework.

47. The IRP Chair said the decision was made jointly with two expert members of the IRP, ample time was provided for oral evidence to be given at the IRP, all the written and oral evidence were carefully weighed up by the IRP immediately after the IRP meeting, the draft decision was reviewed and agreed by all the members of the IRP, and the reasons for the decision were explained thoroughly in the report.

48. We note the IRP Chair has not responded to our concerns about the IRPs consideration of the well-managed needs principle.

49. The National Framework describes the well managed needs principle at paragraphs 162 to 166:

‘The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.

An example of the application of the well-managed needs principle might occur in the context of the behaviour domain where an individual’s support plan includes support/interventions to manage challenging behaviour, which is successful in that there are no recorded incidents which indicate a risk to themselves, others or property. In this situation, the individual may have needs that are well-managed and if so, these should be recorded and taken into account in the eligibility decision.’

50. In this case the IRP and ICB relied on the management of Mrs G’s needs by the care staff and by the district nursing service when considering whether she had a primary health need.

51. The IRP notes the indwelling catheter was problematic to manage, and this caused her ongoing distress. Medications were trialled to manage this distress, but this was not successful. The indwelling catheter could not be managed by the district nursing team, and this was changed to a suprapubic catheter in March 2007. This remained problematic to manage because of her bladder spasms.

52. The IRP also recognised Mrs G was diagnosed with 22 urinary tract infections (UTIs) in the 26-month review period. She required additional care and support to maintain her skin integrity and hygiene around the catheter insertion sites, and she required antibiotics from her GP for an infection in the catheter insertion site.

53. In the IRP, the report states it took into account Mrs R’s concerns that her mother’s needs may have been exacerbated because the care home did not have experience in caring for someone with Parkinson’s disease. The IRP quoted paragraph 145 of the National Framework, which states ‘…sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist”.'

54. The IRP does not consider Mrs R’s concerns about her mother’s needs being exacerbated because of the environment she was in. The IRP concluded the majority of Mrs G’s care was to meet her social needs, and whilst she had some health needs, this was not the main aspect of the care provision she required. This conclusion does not match the description set out in the narrative of the four key indicators.

55. The IRP Chair has not specifically responded to our concerns about the four key indicators, and our concern that the IRP does not give appropriate weighting to the evidence with each of the four indicators.

56. We have found a failing in how the IRP interpreted and applied the well managed needs principle, and the consideration was not in line with the National Framework. The IRP has not addressed our concerns.

57. The concerns we raised in relation to the four key indicators and well-managed needs principle are therefore still unresolved. We consider this is a failing. We will consider the impact of this later in our report.

Consideration of the evidence in the DST covering 2007 to 2008

58. Mrs R complained the IRP does not appear to consider the evidence in the DSTs to clearly describe the events which led to Mrs G being found eligible for CHC from 16 August 2007, because her care needs did not change significantly at this time.

59. The DSTs covered three separate periods: • DST 1: 5 July 2005 to 5 July 2006 • DST 2: 5 July 2006 to 5 July 2007 • DST 3: 5 July 2007 to 23 April 2008 60. The IRP report states, ‘the IRP considered DST 3 up until 15 August only.’

61. In October 2024, we asked the IRP to explain why it did not consider the evidence in the DST’s to clearly describe the events that changed Mrs G’s eligibility for CHC funding from not eligible to eligible from 16 August 2007.

62. The IRP stated it was asked to look at the period from 5 July 2005 to 15 August 2007 only. The Chair said the IRP must not be influenced by the fact the patient may have been found eligible either before or after the period it is considering. The Chair said there is the possibility that if the IRP had examined the period of care from 16 August 2007 onwards, it may have reached a different view and disagreed with the ICBs finding of eligibility for that period. For this reason, it is important the IRP only focuses on the period it was tasked with reviewing.

63. The IRP Chair has set out why the IRP did not consider the evidence in the DSTs to demonstrate why Mrs G became eligible for CHC funding on 16 August 2007.

64. We have reflected on the information the IRP has provided.

65. The IRP is correct when it states its responsibility is to focus on the period of care it has been asked to consider. The factors which mean that someone becomes eligible outside of the period under consideration are not relevant in the IRP. This is because the IRP will only consider evidence that would have been available to the original multi-disciplinary team (MDT) or Integrated Care Board (ICB) when making their initial decision.

66. We recognise the IRP is not required to consider evidence from outside the period under review. We have not found any failings in relation to this point.

Impact

67. We have identified several failings in the IRPs consideration of this matter, specifically: • The IRP did not have an independent clinical adviser • The IRP did not robustly consider the well-managed needs principle • The evidence in the four key indicators does not match the descriptors set out, and the evidence described in the four key indicators may support a possible primary health need 68. We have also found the IRP has not sufficiently responded to these concerns when asked to do so.

69. We consider this means Mrs G’s eligibility for the period under review has not been robustly considered. Mrs R says as a result she has experienced frustration, disappointment, and distress. We consider we can link this impact to the failings we have found.

70. Mrs R also states her mother’s estate has been financially disadvantaged. Whilst we cannot state whether this is the case, as we do not know whether a robust IRP consideration would have found Mrs G eligible for CHC funding, we recognise there is a possibility the estate has been financially disadvantaged.

1. Mrs R complains about NHS England’s (NHSE) decision her mother, Mrs G was not eligible for NHS continuing care (CHC). We understand the CHC process can be time consuming and at times challenging to navigate.

2. We have identified that NHSE did not appropriately consider all evidence at an Independent Review Panel (IRP) in line with the National Framework. We have seen the IRP did not have an independent clinical adviser in this case. We have also found how the IRP interpreted and applied the well managed needs principle was not in line with the National Framework. We have found the IRPs consideration of the evidence in the four key indicators does not match the descriptors set out, and the evidence described in the four key indicators may support a possible primary health need.

3. We have concluded the IRP Chair did not robustly respond to these concerns when we raised them in October 2024.

4. We have seen the IRPs consideration of the DST evidence which set out how Mrs G’s needs changed to lead to her eligibility after the period under review was appropriate.

5. We have partly upheld this complaint.

6. We have asked NHS England to reconvene an IRP to consider this period.

71. We make recommendations in line with our Principles for Remedy which are reflected in the NHS Complaint Standards. These say organisations should identify instances where things have gone wrong, take responsibility for these and find ways to put things right for those involved. They should learn from complaints to improve services.

72. We have identified failings in relation to the IRP consideration of this case and this has not been remedied by NHS England. We consider this led to frustration, distress, and a potential financial disadvantage to Mrs G’s estate.

73. With that in mind, we recommend that following our final report, NHS England reconvene an IRP taking into the account the failings we have identified in the consideration of the evidence. We ask that NHS England completes this within three months of the date of our final report.

74. We will ask NHS England to send us evidence it has completed all of the recommendations we make in the final report.

75. NHS England should send us evidence it has completed all of the recommendations we have made.

76. This ends our report.