NHS England - Midlands and East (regional office)

4. Mrs O complains about NHS England’s decision to uphold Birmingham and Solihull Integrated Care Board (ICB)’s decision that her aunt, Mrs D, was not eligible for CHC funding from 1 April 2004 to 15 October 2008.

5. Mrs O specifically complains about: • An excessive delay in the review process • Inconsistent eligibility determination, as she was eligible from October 2008 but not from 2004 to 2008 • Disparity in application of National Frameworks • Conflicting conclusions in the Decision Support Tools (DSTs) • The consideration of Nutrition and swallowing • The consideration of Complexity of nursing needs • Inconsistency in the choking risk concerns • Behavioural issues underestimated • Incorrect medical history relating to Parkinson’s disease • Inappropriate comments on body image

6. She states this decision has negatively impacted the estate as Mrs D had a primary health need which was consistently overlooked.

7. Mrs O is seeking a reconsideration of NHS England’s decision.

8. Mrs D had a cerebral vascular accident (CVA, or stroke) which affected her ability to swallow, her speech, and her mobility. She was admitted to hospital for treatment and rehabilitation. She was discharged on 13 August 2003 to a nursing home.

9. Mrs D died on 6 June 2010.

10. A request for review of CHC eligibility was received on 21 March 2014 for the period 1 April 2004 to 15 October 2008. Mrs D had not previously had her eligibility assessed for this period and so a Previously Unassessed Period of Care (PUPoC) Decision Support Tool (DST) was completed.

11. This was submitted to the ICB for verification on 22 October 2018. The outcome was that Mrs D did not have a primary health need, and she was not eligible for CHC funding.

12. This decision was challenged and an information review meeting was held on 25 February 2022. The original decision was upheld and so a local review was requested.

13. A desk top review and a formal Local Review Meeting (LRM) was carried out on 27 June 2024. This concluded she was not eligible for CHC funding.

14. An independent review panel (IRP) was requested on 15 August 2024. The IRP was carried out on 17 January 2025.

17. 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.

18. It is our role to decide whether NHS England’s IRP made the decision that Mrs D was not eligible for NHS continuing care in line with the National Framework. We cannot question discretionary decisions when they have been made without maladministration (fault). This includes decisions about eligibility for NHS continuing care. So, we can only uphold a complaint about an eligibility decision if there is some specific fault in the way the IRP reached the decision. Such decisions are based on clinical judgements and opinions.

19. The purpose of the IRP is to review the procedure followed by the ICB in making a decision about a person’s eligibility, or the primary health need decision by the ICB. In reaching a view about whether the ICB followed the correct process and correctly applied the eligibility criteria, the IRP can: • recommend the ICB should reconsidered the case and address any faults identified in the process, or • reach a view as to whether the individual should or should not be considered to have a primary health need.

20. When we look at a complaint about an IRP, we consider whether it took account of all the relevant information provided to it in reaching its decision.

Delay in the review process

21. Mrs O’s solicitors state this case took a significant length of time to reach its conclusion. They state this has taken approximately eleven years to complete, which has made the validation of the eligibility decision extremely difficult, as it relies heavily on records which are now difficult to verify or challenge.

22. The IRP discussed the concern about the length of time this took to review, and noted there were several delays from both parties. The IRP recommended the ICB to review the process in this case and consider whether lessons could be learnt to prevent any future cases experiencing such delays.

23. We recognise the length of time this took to complete would have been difficult for the family. We consider sufficient action has been taken to put this right as the IRP has made a recommendation to the ICB. We therefore do not propose to take any further action on this point.

Inconsistent eligibility determination

24. The solicitors argue the determination of the date Mrs D became eligible is inconsistent, as she was eligible from October 2008 but not from 2004 to 2008.

25. It is important to recognise this case solely considers the period from 2004 to 2008. The IRP was made aware that Mrs D was eligible for CHC funding from 15 October 2008, but the report states the IRP were not able to make any comment on this decision.

26. The solicitors have requested an explanation as to why she was eligible for funding from 15 October 2008 but not for the earlier period.

27. We recognise the solicitors feel that the eligibility determination was inconsistent. We also recognise that needs can change, and eligibility for one period does not automatically mean eligibility for a previous period. The IRP has carried out a thorough review of the eligibility for the period of 2004 to 2008, and we do not consider that eligibility for a latter period influences the eligibility for this period.

Disparity in application of National Frameworks

28. The solicitors have stated that in the DSTs, the 2022 National Framework was applied to the period from April to December 2004, and the 2016 National Framework was used for January 2005 to October 2008.

29. The IRP used the 2022 National Framework to consider the period from 2004 to 2008. The IRP was carried out on 17 January 2025, and so it has used the National Framework which was in place at the time. This is the correct action to take.

30. We understand it would have been worrying to think the incorrect version of the National Framework was used to consider eligibility.

31. Our role is to consider whether the IRP was carried out robustly and correctly. We can see it has used the version of the National Framework which was in place at the time, which is the appropriate action.

Conflicting conclusions in the DSTs

32. The solicitors complain the DSTs reached conflicting conclusions about domain weightings, leading to difficulties establishing whether Mrs D was eligible for funding. We recognise this would be stressful and confusing.

33. The role of the IRP is to consider the period in its entirety and it can overrule decisions reached by the DST. We appreciate the DSTs conclusions caused distress. The IRP decision supersedes all other decisions, there are no indication of failings by NHS England, as the IRP has considered the whole period and reached a decision.

Nutrition and swallowing

34. The applicants complain Mrs D had high needs in this domain, and the IRP said she had moderate needs in this domain.

35. High needs in this domain is defined as: ‘Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway. OR Subcutaneous fluids that are managed by the individual or specifically trained carers or care workers. OR Nutritional status “at risk” and may be associated with unintended, significant weight loss. OR Significant weight loss or gain due to identified eating disorder. OR problems relating to a feeding device (for example PEG) that require skilled assessment and review’.

36. Moderate needs in this domain is defined as: ‘Needs feeding to ensure adequate intake of food and takes a long time (half an hour or more), including liquidised feed. OR unable to take any food and drink by mouth, but all nutritional requirements are being adequately maintained by artificial means, for example via a non-problematic PEG.’

37. The solicitors dispute the care plan in 2006 which states Mrs D is able to swallow well, and enjoyed sweet food. They state this is factually incorrect and family members were informed she could not eat solids and was unable to swallow food safely after her first CVA in 2003. They also state that a PEG was used several times per day, which would not have been necessary if she could swallow well. The solicitors explained Mrs D was given small pieces of chocolate under nursing supervision, but this was then stopped due to the choking risk.

38. The IRP recognised she had a PEG following her CVA in 2003 to support her nutritional and hydration needs.

39. The IRP quoted the dietary and fluid intake care plan dated 19 October 2006, which stated ‘Mrs D is able to swallow well and she knows that she needs to take her time to swallow. Mrs D will only eat when she feels like it. She likes biscuits, chocolates, and cakes.’

40. We can see the solicitors explained the domain should be high because the stroke affected her ability to swallow, and she was admitted to the care home with dysphagia. This was discussed at the IRP and the IRP assessed whether there was any evidence of dysphagia that required skilled intervention to ensure adequate nutrition and hydration, and to minimise the risk of choking.

41. We understand the solicitors disagree with the records in relation to Mrs D’s nutrition and swallowing, particularly around her being able to swallow well and enjoy sweet food. It is not the role of the IRP to determine the validity of records. It is to consider the evidence presented. We cannot see any evidence to suggest the validity of the records was raised during the IRP. Our role is to ensure the IRP has considered all the evidence presented to it and given this fair and robust consideration.

42. We have seen the IRP considered all the relevant evidence when it formed its decision in relation to nutrition and swallowing. We therefore will not consider this further.

Complexity of nursing needs

43. The solicitors have said there are a number of nursing needs which collectively mean Mrs D has a complexity of care needs. The issues are as follows: • PEG was the sole source of nutrition • PEG was initially inserted nasally as her throat muscles did not work • PEG was later inserted into her stomach • Frequent infections including MRSA • A surgery to replace the PEG which had become cracked • Repeated refusal of medication and PEG feeds • Dysphagia and choking risk • Ongoing PEG management overseen by additional care staff • Incontinence and vomiting which were more frequent than ‘several occasions’ and directly related to PEG feeds.

44. The solicitors state the issues cannot be considered unproblematic. They say her care needs relating to the PEG for food and medication and its continued associated risks mean this need should be classed as severe.

45. At the time of the IRP, the applicants said the nutrition domain should be scored as high, and the drug therapies should be considered severe.

46. The IRP recognised all of the issues listed above. It noted that she required all her medications to be administered via a PEG. It recognised she had dysphagia and choking risk, and ongoing PEG management to be overseen by additional care staff. In the consideration of the Complexity key indicator, the IRP recognised the PEG site became infected and this was treated successfully and changed in hospital without issue. The IRP noted she suffered with loose stools and vomiting, and this was resolved by changing the PEG.

47. The IRP also noted she was treated for MRSA.

48. The IRP concluded that whilst her combined care needs created a high and increasing dependency due to her cognitive impairment, her care needs were predominantly related to her daily activities and maintaining her safety. No complexity in health need was identified.

49. We understand the solicitors dispute the IRPs conclusion in relation to the complexity of her care needs. We can see all of the issues and how the needs interact with one another have been considered. We cannot identify any indications of failings in relation to this point.

Inconsistency in the choking risk concerns

50. The solicitors have said the report acknowledges that the IRP recognised Mrs D had expressive dysphasia and a swallowing risk, and the potential of choking remained. The IRP also states it could not identify any management of a choking risk which required skilled intervention. The solicitors argue that this is inconsistent.

51. The IRP acknowledges a choking risk is present. It goes onto state that this risk does not require skilled intervention to manage.

52. We do not consider these to be inconsistent or contradictory statements. The presence of a choking risk differs from the skill level required to manage this risk. We therefore have not identified any indications of failings in relation to this point.

Behavioural issues underestimated

53. The solicitors have argued Mrs D had as severe needs in this domain after 2005. Severe needs is defined as: ‘‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions’.

54. The IRP concluded Mrs D had high needs in this domain. High needs is defined as: ‘’Challenging’ behaviour of type and/or frequency that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.’

55. The solicitors state before her first hospital admission in 2003, Mrs D was already confused and disoriented. There were multiple instances of her wandering at night, requiring family intervention. This is prior to the period of review and so this is not necessary for the IRP to consider.

56. The solicitors state after the hospital admission, she was unable to manage basic care needs, experienced confusion, aggression, inability to make simple decisions, and engaged in risky behaviour such as walking unaided which led to falls and injuries.

57. The IRP recognised she experienced confusion and she could be aggressive, and we have seen this is reflected in the care home records. The IRP noted specific instances of aggression including when she chased a resident with a coat hanger in September 2007. The IRP notes that in relation to her aggression, care staff would usually manage this by offering reassurance to Mrs D, or leaving and returning to complete the staff.

58. The IRP considered she was at risk of falls and known to wander around the home and occasionally into other resident’s rooms. Care staff needed to be aware of her whereabouts to ensure she was not upsetting other residents and she was not at a risk of falls. The IRP notes the care staff needed to be able to intervene if necessary.

59. The IRP noted she had a referral to the community mental health team, and she struggled with ‘mild but manageable’ behavioural and psychological symptoms of dementia (BPSD). The IRP could not find any evidence of Mrs D’s behaviour that was of a severity and/or frequency that posed a significant risk to self, others, or property. The IRP also concluded there was no evidence that her behaviour required a prompt and skilled response outside the range of the planned interventions. The IRP decided her compliance with interventions could be variable, but she was usually responsive to planned interventions.

60. We recognise the solicitors disagree with the IRPs conclusion in this domain. We consider the IRP has carried out a thorough consideration of Mrs D’s needs in this domain, and the solicitors have not brought anything to us which has not already been considered by the IRP. We cannot question the IRPs discretionary decisions that have been made without maladministration (fault), as such decisions are based on clinical judgements and opinions. We have not identified any indications of failings in relation to the IRPs conclusion in this domain.

Incorrect medical history

61. The solicitors complain the report mentions a history of Parkinsons disease, when Mrs D did not have a diagnosis of Parkinsons disease.

62. The IRP states ‘The IRP noted that DST records that the family submission gave a history of Parkinson’s disease. It was noted that there is no formal diagnosis of Parkinson’s disease in the medical records and there were no specific Parkinson drugs prescribed. However, Rivastigmine was prescribed. This drug is used to treat mild to moderate dementia caused by Alzheimer's or Parkinson's disease.’ The IRP recognised that Lewy Body Dementia, which Mrs D was diagnosed with in 2006, has similar symptoms to Parkinson’s disease.

63. The IRP also reminded the solicitors that the consideration of CHC is not diagnosis led but based on level of needs, and the National Framework is clear that the assessment of needs should not be diagnosis led.

64. The solicitors state the IRP mentions a history of Parkinson’s disease. They solicitors told us the family has never discussed any such history and she has not been diagnosed with Parkinson’s disease. The solicitors state this raises the serious question of whether there has been confusion with another patient.

65. We have reviewed the DST which states the family testimony says, ‘severe Parkinson’s’. The DST goes on to state no evidence was found of any confirmed diagnosis of Parkinson’s disease. We are unsure why this is mentioned in the family testimony section if all parties are in agreement that she did not have a diagnosis of Parkinson’s.

66. All parties are in agreement that Mrs D has never been diagnosed with Parkinson’s disease, despite being mentioned in the DST. We can see no indication that there has been confusion with another patient. This did not have an effect on the overall eligibility decision. We therefore will not consider this further.

Inappropriate comments on body image

67. The solicitors have referenced the IRPs acknowledgement of concerning comments Mrs D made about her body image.

68. In the nutrition domain, the IRP notes ‘it was recorded she had some issues with her body image and ‘did not want to get fat’. A referral was made to Community Mental Health Team regarding concerns about a possible eating disorder. Attitudes to body weight continued in 2004 to 2005 regarding not wanting to get fat, and concerns about deliberate attempts to vomit. We have seen this is also referenced in the DST.

69. The solicitors have said the family find this to be ‘absurd’, given Mrs D’s medical condition and state of mind at the time. They have said if this was genuinely a nursing concern, it further reflects the complexity of her situation.

70. We do not consider this had an impact on the eligibility decision. We recognise the family felt these comments were absurd, but both the DST and IRP have noted this within the records. We do not consider it is inappropriate to reference this in relation to the CMHT referral as it was relevant information.

71. The solicitors have argued that due to the other issues they have raised, Mrs D did have a primary health need which was consistently overlooked. We have not identified any indications of failings in relation to the IRPs consideration of Mrs D’s eligibility for CHC funding.

72. We understand the question of someone’s eligibility for CHC funding can be a complex and emotional process, and we hope our consideration provides reassurance and clarity on the decision. We thank Mrs O for bringing this complaint to our attention.

1. We have carefully considered Mrs O’s complaint about NHS England.

2. Having completed our consideration of this complaint, we have not identified any indications of failings in NHS England’s consideration of Mrs D’s eligibility for NHS Continuing Healthcare (CHC).

3. We have decided the IRP has carried out a robust consideration of this case. We understand how difficult it is to challenge CHC eligibility decisions, and we were sorry to hear about Ms O’s experience.