Summary: Mrs B complains about the ICB’s funding of her disabled son F’s care. She says the ICB did not fund enough care hours, so the Council paid for extra overnight care which meant it would not increase the respite hours for her and her son. Mrs B says this had a negative impact on her and her husband’s mental health and they lost out financially. The organisations acted with fault as they did not assess F’s needs for care and support in a holistic and multi-agency way in line with relevant guidance. They also failed to communicate with each other effectively. This caused preventable distress and inconvenience to Mrs B. The organisations have agreed to apologise for the impact of these failings on Mrs B, pay Mrs B a financial remedy, and take action to improve their processes when assessing Children’s Continuing Care.

The complaint

1. Mrs B complains about the funding of her disabled son F’s care by NHS South West London ICB (formerly the CCG) and London Borough of Richmond upon Thames (the Council). She also complains about the amount of respite care available to F’s family. She says the ICB’s Children’s Continuing Care review in January 2020 was flawed and did not adequately capture F’s health needs. She says it did not recommend enough weekly care hours for F (only enough to cover 6 nights, not 7, and not providing any support during the day). She also complains about the ICB’s appeal panel decision in May 2020 and complaint response in July 2020, both of which upheld the January 2020 decision about F’s needs and care hours.
2. Mrs B says the Council is paying for the seventh night of F’s care but should not be, as this is a health care need the NHS should pay for. She says as a result, the Council would not agree to increase the respite care hours available for her and her husband to use, as it was already paying more than it should. Mrs B is also worried the Council could review its position and decide to stop paying for one night of F’s care. Mrs B says these events had a huge impact on her and her husband’s mental health and put them under unnecessary stress instead of getting the support they and F need. She also says they lost out financially as her husband had to reduce his working hours to provide more support at home.
3. Mrs B wants the ICB to accept its decisions were flawed and that it should pay for F’s care for 7 nights per week. She wants the Council to agree to increase the number of respite hours available.
4. We have investigated events up to November 2020, when Mrs B complained to the Ombudsmen. Issues arising after November 2020 need to go through the local appeals and complaints process before we could consider them.

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The Ombudsmen’s role and powers

5. The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, a single team has considered these complaints acting on behalf of both Ombudsmen. (Local Government Act 1974, section 33ZA, as amended, and Health Service Commissioners Act 1993, section 18ZA)
6. The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen 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) 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. The Ombudsmen cannot question whether an organisation’s decision is right or wrong simply because the complainant disagrees with it. We must consider whether there was fault in how the organisation reached the decision. (Local Government Act 1974, section 34(3), as amended, and Health Service Commissioners Act 1993, sections 3(4)- 3(7))
8. When considering complaints, if there is a conflict of evidence we make findings based on the balance of probabilities. This means we will weigh up the available relevant evidence and base our findings on what we think was more likely to have happened.
9. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their 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

10. I have considered information Mrs B provided in writing and by phone, written information from the Council and ICB, and relevant law and guidance.
11. Mrs B and the organisations had an opportunity to comment on my draft decision. I considered all comments provided before making a final decision.

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What I found

Relevant legislation and guidance

12. Section 17 of the Children Act 1989 says councils must safeguard and promote the welfare of children within their area, including disabled children, by providing services for them. All disabled children are regarded as ‘children in need’ and are entitled to an assessment under section 17.
13. Where a local authority’s children’s social care department decides to provide services, it should develop a multiagency Child in Need Plan. The Plan sets out which organisations and agencies will provide which services to the child and their family. While some services are offered directly to the disabled child, services can also be offered to parents or carers. (Working Together to Safeguard Children) 
14. Where a child needs constant supervision or care which is largely provided by family members, the family may need professional support to allow them time off from caring responsibilities. The local authority has a duty to provide breaks from caring to help parents who provide care for disabled children (‘short breaks’). Short breaks can include daytime and overnight care in the home of the disabled child or elsewhere. The National Framework for Children and Young People’s Continuing Care (2016) says the ICB and the local authority (which is usually the commissioner of respite / short break care) may need to agree on the respective contribution to this. (National Framework for Children and Young People’s Continuing Care 2016; The Breaks for Carers of Disabled Children Regulations 2011; Part 3 Children Act 1989)
15. Where a child has complex needs they may need a package of ‘continuing care’ for support with their health, social care and special educational needs. Continuing care should be part of a wider package of care, agreed and delivered in collaboration between health, social care and education. The child’s needs should be comprehensively assessed, led by health but including an assessment of health, social and educational needs. The organisations involved need to agree who has responsibility for commissioning and paying for different parts of the care package. The ICB should aim to have links with its relevant local authorities, for the purpose of multi-agency assessments. (National Framework for Children and Young People’s Continuing Care 2016)
16. The National Framework says the ICB should ensure effective liaison with the local authority and effective management of the continuing care process. Joint commissioning or bipartite (two-party) arrangements may be needed to ensure the child’s health and social care needs are catered for in the package of care.
17. There are clear limits on what care the local authority should fund, which should not be a substitute for NHS care for children that meets ‘essential medical needs’. This is known as ‘the Haringey judgment’. It looked at the scope of a local authority’s duties under the Children Act 1989 to provide nursing care for a disabled child to offer respite for the child’s parent. A multi-agency assessment may highlight that care is being commissioned inappropriately by a particular commissioner.
18. The National Framework says ICBs and local authorities should agree a local dispute resolution process to resolve cases where there is a dispute over a child’s continuing care needs and/or over responsibility for the funding of a package of continuing care. ICBs must also have complaints procedures in place to handle disagreements from the child or their family / carer about any part of the continuing care process. They should also have a review / appeal process, to provide greater patient confidence in the impartiality of decision-making.
19. The ICB in this case has a Local Joint Dispute Resolution Procedure (November 2019) which includes the Council. The Procedure says there are times when a joint funding agreement is proposed between the ICB and local authority. This decision to jointly fund care can lead to a dispute between the organisations. This includes funding or joint funding for children including those receiving continuing care. The Procedure says it aims to ensure that “funding is appropriate to the organisation”.
20. The ICB also has a Children and Young People’s Health Panel Terms of Reference document (2019). The aim of the Panel is to decide on health or joint funding for treatment and care of Wandsworth children. It is also to “develop holistic assessments and problem solving through inter-relationships of health, education and social care”.

Background

21. Mrs B’s son F (4 years old) has cerebral palsy and complex care needs following a severe brain injury in 2018 at eight weeks old. He spent 10 months in hospital. In early 2019 he returned to his parents’ care and has been on a Child in Need Plan since.
22. F needs 24-hour monitoring and support with his care needs. He is tube fed, needs regular oral and nasal suctioning of secretions in his mouth and throat, epilepsy management, and regular administration of medications.
23. In November 2018 the ICB assessed F’s needs whilst he was in hospital, to arrange a care package in readiness for his discharge home. In December 2018 a multi-agency panel agreed F should have 42 hours of NHS children’s continuing care support each week, plus six hours per week of short breaks social care support which would be funded by the (former) council.
24. In March 2019 after a review, the ICB and former council’s Joint Panel for Children with Complex Needs decided F should get 52 hours per week of continuing care support, plus 6 hours of short break support. The ICB agreed to top up the payment for the short break support because F needed a more highly trained Healthcare Assistant to support him. Funding for the short breaks was paid directly to Mrs B so she could buy short break services herself.
25. In December 2018 the family had moved into the Richmond Council (the Council)’s area. Richmond Council took over responsibility for the social care parts of F’s care in April 2019. The ICB stayed responsible for funding the healthcare elements as Mrs B stayed with her GP Practice in Wandsworth.
26. At a court hearing in April 2019, the Council and judge agreed that F’s welfare meant his parents needed 7 nights of healthcare support, not the 6 they were getting. The Court did not make an Order enforcing this, but the Council agreed to pay for one night of support for F from a healthcare assistant, as well as the 6 hours per week short break payment. This arrangement was supposed to be temporary for 6 weeks and then reviewed. However, it has not been reviewed since.
27. In January 2020 the ICB carried out a routine continuing care package review, and a Council social worker also attended. The ICB decided the continuing care package should be increased from 52 to 56 hours per week. Mrs B was unhappy with the review and appealed in February 2020. The appeal panel upheld the ICB’s decision of 56 hours per week, and so did the ICB’s complaints process after the appeal.
28. In April 2020 Mrs B asked the Council’s Short Breaks Panel for an extra 10 hours of support per week. She said:
• the 6 hours she currently got was helping them extend the time they could sleep on a few nights each week
• they could not use the 6 hours short break for respite as they had no other way of extending F’s night-time care to get the sleep they needed to care for him during the day and to work
29. The Council declined the request for an increase in June 2020. It said the 6 hours respite per week was enough if it was being used as intended - for respite during the day, rather than extending night-time care. Mrs B appealed this decision and involved her MP. In October 2020 the Council decided to increase the short break provision to 12 hours per week, because of the care role required of F’s parents and their need for rest.

Analysis

30. The Ombudsmen cannot decide whether the ICB’s decision about continuing care hours, or the Council’s decision about respite / short break hours, is right or wrong. We do not question the merits of a decision that has been properly taken. However, we can look at whether there was fault in the way the organisation(s) reached the decision.
31. The ICB and the former council jointly considered F’s needs and his parents’ needs as carers at the March 2019 Joint Panel. The Panel decision about the care package was based on:
• the updated Decision Support Tool (DST) and CHAT tool completed by a ICB children’s continuing care assessor in January 2019
• evidence from Wandsworth Council and Richmond Council social workers
• views from Mrs B
32. From what I have seen, the March 2019 Joint Panel decision was based on consideration of appropriate and relevant evidence. Mrs B put her views to the Panel about the ratings in the mobility and medication parts of the CHAT tool. However, I have noted the Panel minutes say “Current 50hrs Band 4 CCG support + 6hrs Short Breaks social care support would cover 7 nights support. Is that adequate support?”. This suggests the agreed hours in March 2019 were intended to cover 7 nights of care for F, rather than 6 nights of overnight care plus 6 hours of short-break daytime respite.
33. The care and support package for F and his family was considered again at a court hearing in April 2019, which the Council attended as it was taking over F’s care from the former council. The judge and Council both felt the care and support package, which at this time was 52 hours of continuing care plus 6 hours of short break / respite was not enough and that F needed 7 nights of healthcare support not 6.
34. The Council, in the care plan it submitted to the Court, noted Mrs B did not feel 52 continuing care hours per week from the ICB was enough to cover F’s care for 7 nights. She said it only covered 6 nights from 10pm to 6.40am. Mrs B said F needed care and observation overnight for 7 nights so she and her husband could sleep, because of their caring role during the daytime and the need for them both to work. Mrs B said she and her husband were exhausted. Her GP, the community nursing team and F’s physiotherapist also expressed concerns about Mr and Mrs B’s fatigue.
35. The Council agreed to pay for one night of support for F, which it refers to as the “court directed night”, in addition to the 6 hours per week for short break / respite care. This was done as a goodwill gesture and was intended as a short-term measure for 6 weeks.
36. The Council told us it considers the seventh night of F’s care to be a health need it should not be paying for. The Council said it had hoped the ICB would “pick up” responsibility for this but it has not done so.
37. The ICB told us it had determined F’s assessed continuing care hours (52 hours per week) by using the continuing care Decision Support Tool and CHAT tool (Continuing Healthcare Assurance Tool). It said parents are given flexibility to use the assessed continuing care hours as they wish. It said:
• Mrs B chose to use the hours to cover 6 nights of care for F per week
• The hours could have been used to cover 7 [shorter] nights per week if Mrs B had wanted to
• It was the Council’s decision to provide extra hours for a carer to cover one night
• The ICB had agreed to the Council’s request for it to ‘top up’ the one-night of Council-funded care so a more highly trained Healthcare Assistant could provide overnight care. It said this was despite this being above F’s assessed healthcare need.
38. The evidence I have seen indicates the ICB and Council did not liaise or work together after the April 2019 court hearing to look at the issue of the Council paying for one night of F’s care. The National Framework makes it clear there should be a holistic and multi-agency assessment of the needs of the child and their family / carers. It emphasises the need for collaboration and effective liaison between health and social care organisations, to ensure the child and their family’s needs are appropriately met. The lack of holistic assessment and multi-‑agency working in this case is not in line with the National Framework. This is fault.
39. The ICB re-assessed F’s continuing care package at a routine review in January 2020, and a Council social worker attended the review. The ICB decided to increase the continuing care package by 4 hours per week to 56 hours. It noted Mrs B was also receiving 6 hours per week of daytime support (short breaks) and one night of overnight care (8 ½ hours) paid for by the Council and topped up by the ICB.
40. The ICB then considered Mrs B’s appeal against the decision, and her later complaint. From what I have seen, the ICB appeal and the later consideration by the Children’s Clinical Lead and Director of Quality were based on a review of appropriate evidence, including:
• Information from Mrs B
• Completed Decision Support Tool and CHAT Tool
• Information from health professionals
• Health Panel Pro Forma January 2020
41. Meanwhile, in February 2020 the Council said it could not provide more respite / short break support as it already provided one night of overnight care and 6 hours of direct payments per week. At that stage the Council was aware Mrs B was using the 6 hours of direct payments to extend the amount of overnight care available for F, rather than as daytime respite. In June 2020 the Council declined Mrs B’s request for an increase in respite / short break hours. In October 2020 the Council decided to increase the direct payment from 6 to 12 hours per week because of the care role of F’s parents and their need for rest. The Council said it would recommend that the ICB reviewed its support package as the primary need was a health one. The Council’s consideration of the amount of short break / respite care was based on:
• Review of F’s social care records
• Information about F’s healthcare support from the ICB and his health needs
• Information from health professionals
• Information from Mrs B about the family’s situation
• Information from Mrs B’s social worker, and completed Child in Need assessments
42. I have not seen any notable gaps in the evidence the ICB and Council considered when deciding on the number of continuing care hours and the number of short break / respite hours during the reviews, appeals and the complaint during 2020.
43. The Council said its decision to pay for one night of care for F has not impacted on its consideration of the respite / short break care, and that these are paid through different processes and budgets. However, the March 2019 Joint Panel and the February 2020 response to Mrs B both refer to the cost / amount of overnight care when considering the short break / respite care. Mrs B told us the Council said the family was “already getting a lot of care”, and it was “paying more than it should” towards F’s care because of the one overnight. Mrs B said the Council has referred to this as a reason not to increase the respite / short break care.
44. The ICB told us it was not aware of any contact from the Council since either the April 2019 court hearing, or the October 2020 Short Break Panel appeal decision, about the Council’s funding of one night of F’s care. However, Mrs B said she often raised this issue at the regular Child in Need meetings attended by both the ICB and the Council. The ICB said it does not agree the Council is meeting any assessed healthcare needs (in paying for one night of care). The Council told us it considers it is meeting a health need in paying for one overnight.
45. The ICB and Council have not worked together to consider F and his family’s care and support needs in a holistic and effective way. The evidence also suggests the Council may have factored in the payment for the overnight care when deciding about the short break / respite care, despite saying this is not the case.
46. As outlined earlier, the National Framework makes it clear there should be a multi-agency understanding of the child’s needs, including agreement about who has responsibility for commissioning and funding different parts of the continuing care package. In this case, the consideration of F’s continuing care hours, and funding for respite / short break care, does not appear to be in line with the 2016 National Framework. This is fault.
47. I have also noted the Council and ICB have not used local dispute resolution processes to resolve any dispute about funding particular parts of F's care. The original agreement for the Council to fund one night of care was due to be reviewed within 6 weeks of the April 2019 court hearing. This has not happened, and Mrs B’s appeals and her complaint to the ICB have not prompted any communication about this between the Council and ICB either.
48. I cannot say whether the ICB or Council would have made different decisions about the number of continuing care hours and the respite / short break care if they had acted without fault. However, this is a significant area of concern. Mrs B, her social worker and health professionals repeatedly raised concerns about the strain on Mrs B and her husband because of the amount of night care and respite care available and their level of caring responsibility as well as their need to work. Mrs B has also experienced avoidable worry and uncertainty about whether the Council will continue to fund one night of care. She has spent significant time and effort pursuing her complaint to try to resolve the matter. This could have been avoided if the ICB and Council had worked together to agree on responsibility for commissioning the care and support for F and his family.

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Agreed action

49. There were failings in communication between the ICB and Council which impacted on how they assessed and decided on funding for care and support for F and his family. The ICB and Council did not always work together effectively to consider F and his family’s care and support needs in a holistic and multi-agency way. This led to a lack of agreement about who had responsibility for commissioning and funding some parts of F’s continuing care package. These failings have caused an injustice to Mrs B. To address these failings, the ICB and Council have agreed to take the following action within one month of our final decision:
• Apologise for their failure to holistically assess F’s care and support in line with the guidance set out in the National Framework, and for their failure to communicate effectively with each other about the care and support package. They will apologise for the impact this had on Mrs B
• Pay Mrs B £650 to recognise the avoidable distress and frustration she has experienced as a result of these failings. This payment will be split 50/50 between the two organisations
• Pay Mrs B £250 to recognise the significant time and effort she has had to spend pursuing the appeals and complaints process to get this issue resolved. This payment will be split 50/50 between the two organisations
50. Within two months of our final decision, the ICB will:
• Arrange a joint review of the current package of care and support offered to Mrs B and F, that is in line with the 2016 National Framework and ensures their needs are considered in a holistic, multi-agency way. The review needs to be carried out with London Borough of Wandsworth, as Mrs B has now moved back into that area. The review decision should ensure there is clear agreement about who has responsibility for commissioning and funding different parts of the continuing care package. This review should take place as an additional event, rather than as part of the annual review process
51. Within six months of our final decision, the ICB and Council will:
• Provide an Action Plan with details of the review of their continuing care procedures to ensure assessments are carried out in a joined up and holistic way, in line with the 2016 National Framework. This review should address how the organisations will ensure assessments represent a holistic and multi‑agency consideration of a child’s needs alongside those of their family. The results of this review, and details of any remedial action taken, should be shared with Mrs B and the Ombudsmen when completed

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Final decision

52. There were failings by the ICB and Council in their handling of the children’s continuing care process, and assessment for respite / short breaks, for Mrs B and her son F. This caused avoidable stress and upset to Mrs B. The ICB and Council have agreed to take action to remedy this injustice. I have therefore completed my investigation.

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Investigator's decision on behalf of the Ombudsman