Summary: We found fault by London Borough of Merton and NHS South West London Integrated Care Board as they failed to take appropriate action to promptly resolve disputes around Mrs Y’s care needs. This led to unnecessary delay, which in turn caused Mrs Y and her family avoidable distress and uncertainty. These organisations will apologise to Mrs Y and her family and pay them a financial remedy.

The complaint

1. The complainant, Mr X, is complaining about the care and treatment provided to his mother, Mrs Y, by London Borough of Merton (the Council) and South West London ICB (the ICB) in 2023. 
2. Mr X complains that the Council and ICB failed to recognise Mrs Y’s complex needs and provide her with appropriate care. He says the Council and ICB ignored specialist clinical advice when deciding on a suitable placement for Mrs Y. Furthermore, Mr X says the Council and ICB failed to share accurate information with the family and did not arrange a best interests meeting to discuss Mrs Y’s care.
3. Mr X says these events caused Mrs Y significant anxiety, distress and uncertainty and resulted in her losing faith in health and social care services. Mr X says the failure to properly support Mrs Y means any opportunity for her to return home has now been missed. Furthermore, Mr X says these events have also had an impact on family members, who have been required to provide additional support.

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The Ombudsmen’s role and powers

4. The Local Government and Social Care Ombudsman and Health Service Ombudsman have the power to jointly consider complaints about health and social care. (Local Government Act 1974, section 33ZA, as amended, and Health Service Commissioners Act 1993, section 18ZA).
5. We investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, we consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
6. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused.  We might also recommend the organisation takes action to stop the same mistakes happening again.
7. If we are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, we can complete our investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

8. In making my final decision, I considered information provided by Mr X and discussed the complaint with him. I also considered relevant information from the Council and ICB, including copies of Mrs Y’s care records. I invited comments from all parties on my draft decision statements and considered the responses I received.

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What I found

Relevant legislation and guidance

Continuing Healthcare (CHC) funding

9. CHC is a package of ongoing care that is arranged and funded by the NHS for a person who has been assessed as having a ‘primary health need’. The first stage of the assessment process requires a health or social care professional to complete a CHC Checklist.
10. If the completed CHC Checklist indicates the person may be eligible for CHC, the next step is a full multidisciplinary assessment. This assessment is completed using a decision support tool (DST). The DST is a record of the relevant evidence and decision-making.
11. The DST is used to recommend whether the person should be eligible for full CHC funding. The DST is used to grade a person in several care domains, including nutrition, behaviour and medication.
12. The relevant ICB will then make a final decision which must uphold the recommendation of the DST in all but exceptional circumstances.
13. The Department of Health and Social Care’s National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care (July 2022 (Revised)) (the National Framework) is the key guidance about Continuing Healthcare. It states that where an individual is eligible for Continuing Healthcare funding the Integrated Care Board (ICB) is responsible for care planning, commissioning services and case management.

Mental Capacity Act 2005

14. The Mental Capacity Act 2005 (the MCA) applies to people who may lack mental capacity to make certain decisions. Section 42 of the MCA provides for a Code of Practice (the Code) which sets out steps organisations should take when considering whether someone lacks mental capacity.
15. Both the MCA and the Code start by presuming individuals have capacity unless there is proof to the contrary. The Code says all practicable steps should be taken to support individuals to make their own decisions before concluding someone lacks capacity.
16. A key principle of the MCA is that any act done for, or any decision made on behalf of, a person who lacks capacity must be done, or made, in that person’s best interests. Section 4 of the MCA provides a checklist of steps that decision-makers must follow to determine what is in a person’s best interests. The decision-maker must also consider if there is a less restrictive option available that can achieve the same outcome.
17. If there is a conflict about what is in a person’s best interests, and all attempts to resolve the dispute have failed, the Court of Protection might be asked to decide what is in the person’s best interests.

Background

18. Mrs Y suffers from Huntington’s Disease (a degenerative neurological condition). This means she has complex care needs. She was living at home with her son, Mr Z, who was her main carer. By 2021, Mr Z was struggling to provide the level of care Mrs Y required.
19. In April 2021, after a brief hospital admission, Mrs Y was admitted to a private hospital specialising in neurological conditions. In this placement, she received 24-hour nursing care. Mrs Y also received additional 1:1 support from a care provider. Mrs Y was in receipt of full CHC funding, which was used to fund the placement.
20. In January 2023, the ICB and Council met with Mrs Y’s family to discuss her long-term care. Representatives from the private hospital were also present. The meeting heard that the private hospital could no longer hold a bed for Mrs Y and that plans would need to be made for her to return home with appropriate support.
21. The ICB reviewed Mrs Y’s eligibility for CHC funding in March. The new DST found Mrs Y was no longer eligible for full CHC funding. The ICB explained that it would continue to pay a contribution towards Mrs Y’s nursing care. This is known as Funded Nursing Care (FNC).
22. In April, the private hospital wrote to the ICB to offer Mrs Y a long-term placement. The private hospital said Mrs Y required 24-hour 1:1 care.
23. That month, Mrs Y’s family attended a discharge planning meeting at the private hospital. The Council explained that, if Mrs Y were to be discharged home, she would receive a package of four care visits from two carers per day. Mrs Y’s family disagreed with this decision.
24. Mrs Y’s family appealed the CHC decision. The family said the private hospital would be submitting further information in support of the appeal.
25. An ICB nurse review found Mrs Y did not require 1:1 care as her behavioural needs did not warrant this. The ICB therefore recommended ending funding for 1:1 care.
26. At a meeting with the Council and ICB later that month, Mrs Y’s family expressed the view that Mrs Y should return home with an appropriate package of care and support. The family said that, if this was not possible, Mrs Y should remain in the private hospital on a long-term basis. However, the Council concluded that Mrs Y’s care needs could be met in a nursing home.
27. Following a further meeting, the multidisciplinary team agreed it would explore a move home for Mrs Y after all. This was due to the family’s strong objection to a placement. The meeting found Mrs Y needed 24-hour supervision, with access to two carers at all times. The meeting agreed Mrs Y’s care would be funded jointly by the ICB and Council. The meeting heard the Council would offer a package of four daily care visits from two carers and would expect the family to provide the necessary additional support.
28. In the meantime, the Council continued to explore possible nursing home placements. The Council’s records show that, by early June, it had contacted around 25 nursing homes and only one considered it could meet Mrs Y’s needs.
29. That month, the ICB and Council reviewed Mrs Y’s DST. This review agreed a change in grading for two of the care domains (nutrition and medication). Nevertheless, this did not alter the decision that Mrs Y did not have a primary health need.
30. In early August, Mr Z visited a proposed nursing home. He said staffing levels were insufficient to meet Mrs Y’s needs, and that further training would also be needed. Mr Z also expressed concern that the nursing home had accepted Mrs Y after only a telephone assessment.
31. On the same day, a specialist adviser from a Huntington’s Disease charity said the private hospital remained the most suitable placement for Mrs Y. The adviser emphasised the need for careful planning if the discharge was to proceed.
32. At a meeting later that month, the family confirmed it would not agree to a nursing home placement and said Mrs Y should return home. A subsequent Mental Capacity Assessment found Mrs Y lacked capacity to make this decision.
33. The Council produced a care and support plan for Mrs Y. This concluded Mrs Y could be supported at home with four daily care visits from two carers. Mr Z expressed concern that this would not be sufficient.
34. The Council arranged an Occupational Therapy (OT) assessment for Mrs Y in September 2023. The OT concluded that it would not be safe for Mrs Y to return home with a package of care visits due to the complexity of her needs. Rather, the OT said Mrs Y would need two live-in carers and waking night care.
35. Over subsequent weeks, discussions continued between Mrs Y’s family and the multidisciplinary team as to whether she could be discharged home safely with the Council’s proposed level of support. In the meantime, the private hospital made a safeguarding referral regarding the plans for Mrs Y's discharge.
36. The Council attended a meeting with Mrs Y’s family in late November. The meeting agreed several key points:

• the family was still awaiting the outcome of the CHC appeal;
• a new DST would be needed given the time that had now passed since the last one was completed;
• no decision should be made about Mrs Y’s future until the CHC appeal had been resolved; and
• a permanent placement in the private hospital would be preferable if a discharge home was not viable.

37. In February 2024, a Council officer submitted a new CHC checklist for Mrs Y. This was intended to begin a fresh CHC assessment process while the outcome of the family’s appeal remained ongoing. The ICB declined to complete a new DST. It said the checklist did not demonstrate a significant change in Mrs Y’s needs.
38. However, the ICB agreed to carry out a joint review of Mrs Y’s needs with the Council.
39. In October 2024, the ICB completed a joint funding review. This found there were no significant changes to Mrs Y’s care needs and that a full CHC reassessment would therefore not be necessary. As a result, Mrs Y’s care remained joint funded by the Council and ICB.
40. At the time of writing this decision statement, the result of the family’s May 2023 CHC appeal remained outstanding.

My findings and analysis

41. Mrs Y has complex care needs. There is evidence in the case records to show there was much disagreement between the multidisciplinary team and Mrs Y’s family as to the nature and extent of these needs. Further, there is evidence of significant disagreement even within the multidisciplinary team as to Mrs Y’s care needs.
42. The DST from March 2023 reflects these differences of opinion to some extent. For example, when scoring the ‘nutrition’ domain, the family, social worker and private hospital all considered Mrs Y’s needs to be ‘high’ in this area. However, the CHC nurse assessor arrived at a ‘low’ marking. The DST documentation reflects further disputes around the ‘continence’ and ‘drug therapies and medication’ domains.
43. Nevertheless, the social worker and nurse assessor ultimately agreed that Mrs Y did not meet the eligibility criteria for full CHC funding. The ICB concluded that Mrs Y would instead be eligible for only for FNC.
44. The ICB notified the family of the outcome of the CHC assessment in April 2023 and the family appealed shortly after this.
45. The multidisciplinary team began planning for Mrs Y’s discharge from the private hospital. At that stage, Mrs Y was receiving 24-hour 2:1 support. Mrs Y’s family felt it would be in her best interests to remain an inpatient in the private hospital. If this was not possible, they preferred that she return home with appropriate support.
46. At the discharge meeting on 17 April 2023, the Council acknowledged that Mrs Y would require 24-hour care. However, the Council said it would only be able to provide four care visits (with two carers) each day, with the family expected to provide the remaining care. The family challenged this, arguing that any support arrangements should be based around the need for 24-hour care.
47. The case records show the Council disagreed with the CHC eligibility decision. In late April, a senior Council manager recorded that the DST “clearly indicates a primary health care need”. For this reason, the Council initially concluded that Mrs Y’s needs could only be safely met in a nursing home if she were to be discharged from the private hospital.
48. Mrs Y’s family disagreed with the possibility of discharge to a nursing home, correctly pointing out that this had not been discussed at the discharge meeting on 17 April.
49. By this point, there was evidently significant disagreement between all parties about the outcome of the CHC assessment. Despite this, the Council did not raise a formal dispute with the ICB.
50. The evidence suggests matters then drifted for several months with no consensus on the best way to meet Mrs Y’s needs. This was exacerbated as the outcome of the family’s appeal remained outstanding.
51. In August 2023, a Mental Capacity Assessment established that Mrs Y lacked capacity to make decisions about her discharge. The Council convened a meeting with the family in November, but this agreed there was little that could be done until the outcome of the CHC appeal was known.
52. Eventually, in February 2024, the Council submitted a new checklist with a view to initiating a fresh DST. However, the ICB declined to proceed with this. A further six months passed before the ICB completed a review. At that point, the outcome of the original appeal remained outstanding.
53. It is important to note that the Ombudsmen cannot comment on the merits of a CHC decision. Nor can we say that a person has a primary health need or should receive full CHC funding. This is ultimately a matter of judgement for the professionals involved in that person’s care. Mrs Y’s family have appealed the CHC decision. This process remains ongoing.
54. Further, it should be recognised that the complexity of Mrs Y needs made this a very difficult situation for all parties. The case records show that numerous professionals were involved, often with opposed views on her needs. Overall, I am satisfied Mrs Y’s family was given the opportunity to contribute to decisions about her care.
55. However, the evidence I have seen suggests both the Council and ICB missed opportunities to resolve matters more promptly.
56. In the Council’s case, it had an opportunity to raise a formal dispute in April 2023 when it was clear it disagreed with the CHC decision. The failure to do resulted in unnecessary delay and represents fault.
57. With regards to the ICB, the outcome of the family’s appeal remains outstanding over two years after it was submitted. This is an unreasonable delay. Again, this is fault.
58. I am unable to say what the outcome of the CHC appeal would have been if resolved sooner. Similarly, I cannot say whether any fresh assessment completed during this period would have resulted in significant changes to Mrs Y’s care.
59. Nevertheless, this delay has caused Mrs Y and her family significant frustration and distress. Further, it has left them uncertain as to whether Mrs Y could have been discharged home with appropriate support if matters had been resolved sooner.

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Recommendations

Council

60. Within one month of my final decision statement, the Council will:

• apologise to Mr X, Mr Z and Mrs Y for the delay caused by its failure to raise a formal dispute with the ICB. The apology should recognise the impact of this delay in terms of the frustration, distress and uncertainty it caused;
• pay Mrs Y £250 in recognition of the impact of this fault on her;
• pay Mr X £250 in recognition of the impact of this fault on him; and
• pay Mr Z £250 in recognition of the impact of this fault on him.

61. Within one month of my final decision statement, the ICB will:

• apologise to Mr X, Mr Z and Mrs Y for the delay caused by its failure to resolve their CHC appeal within an appropriate timescale. The apology should recognise the impact of this delay in terms of the frustration, distress and uncertainty it caused;
• pay Mrs Y £250 in recognition of the impact of this fault on her;
• pay Mr X £250 in recognition of the impact of this fault on him; and
• pay Mr Z £250 in recognition of the impact of this fault on him.

62. Within three months of my final decision, if it has not done so already, the ICB will resolve the CHC appeal in accordance with the CHC Framework, considering in all relevant evidence, and provide Mrs Y’s family with an outcome.
63. The Council and ICB will provide us with evidence they have complied with the above actions.

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Final decision

64. I found fault by the Council as it failed to raise a timely dispute with the ICB over the CHC eligibility decision in Mrs Y’s case.
65. I also found fault by the ICB as failed to process the family’s CHC dispute within an appropriate timescale.
66. In my view, the actions the Council and ICB will now take represent an appropriate and proportionate remedy for the impact of these failings on Mrs Y and Mr X.
67. I have now completed my investigation on this basis.

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Investigator's decision on behalf of the Ombudsman