Summary: Mrs X complained about Milton Keynes Council, Milton Keynes Integrated Care Board and First Option Healthcare in relation to the care of her son, Y. She has said the faults in care led to distress for her and her family. We found fault with Milton Keynes Council, Milton Keynes Integrated Care Board and First Option Healthcare, leading to distress and risk of harm which Mrs X has described. We have made recommendations which the organisations have agreed to carry out to address this injustice.

The complaint

1. Mrs X complains about Milton Keynes Council (the Council) and NHS Bedfordshire, Luton and Milton Keynes Integrated Care Board (the ICB) who jointly funded a children’s continuing care (CCC) package provided by First Option Healthcare (the Agency) for her son, Y. Specifically, she complains:

• following a decision support tool (DST) in November 2021, the ICB decided to reduce Y’s night nursing support from seven to six nights,
• following a DST in December 2022, the ICB did not increase Y’s daytime support. Mrs X said her son needed a fully NHS funded 24-hour care package,
• the ICB and Council delayed arranging a care package for Y by 14 months. That caused a delayed discharge from hospital when he was medically fit,
• before Y was discharged from hospital, the ICB and Council did not put a contingency plan in place for him in the event of issues with his care at home,
• the ICB and Council commissioned an unsuitable care agency to support her son after November 2022,
• before Y was discharged from hospital, the Agency missed the opportunity to recognise how frequent his seizures were. Also, it did not recognise his need for increased oxygen therapy,
• after November 2022, the Agency was not reliable and frequently did not attend,
• the Agency’s care and support was dangerous. In November and December, staff made errors with medications and did not understand Y’s conditions,
• the ICB and Council ultimately did not have proper oversight of the Agency’s care and support to Y; and
• the Council and the ICB responded to complaints late after the complaint being referred back to them.

2. Mrs X said events caused the family mental strain, as she was regularly away with Y in hospital. She says she had to make up for the gaps in her son’s care due to the fault of the Agency. She said she could not support her other children as much as she would have liked at that time. The commute to hospital to see Y was also unnecessarily stressful.
3. Mrs X has said the responses she has had to her complaint did not recognise the gravity of the situation. Her son’s life was significantly impacted by the failures and the apology and financial remedy offered by the Council was not sufficient.
4. Mrs X would like:

• a financial remedy to recognise the impact on Y and the mental strain the failings had on the family,
• a financial remedy to cover the costs travelling to and from the city Y was hospitalised in
• a comprehensive review of the handling of her son’s case with a detailed explanation of the steps taken to ensure such failures do not happen again; and
• clear and specific measures to improve communication and coordination between social care and health services.

Back to top

The Ombudsmen’s role and powers

5. 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).
6. The Local Government and Social Care Ombudsman investigates complaints about adult social care providers. (Local Government Act 1974, sections 34B, and 34C, as amended). The Health Service Ombudsman investigates complaints about ‘maladministration’ and ‘service failure’ in the delivery of health services (Health Service Commissioners Act 1993, section 3(1)).
7. 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).
8. 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.
9. If we are satisfied with the actions or proposed actions of the organisations 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)
10. When investigating complaints, if there is a conflict of evidence, we make findings based on the balance of probabilities. This means that during an investigation, we will weigh up the available evidence and base our findings on what we think was more likely to have happened.

Back to top

How I considered this complaint

11. I considered evidence provided by Mrs X, the Council, the Agency and the ICB as well as relevant law, policy, and guidance.
12. Mrs X and the organisations have had an opportunity to comment on my draft decision. I considered these comments before making this final decision.

Back to top

What I found

Children’s Continuing Care

13. Some children and young people (up to their 18th birthday) may have very complex health needs. These may be the result of congenital conditions, long-term or life limiting or life-threatening conditions, disability, or the after-effects of serious illness or injury.
14. These needs may be so complex, that they cannot be met by the services which are routinely available from GP practices, hospitals or in the community.
15. A package of additional health support may be needed. This additional package of care has come to be known as continuing care.
16. CCC is governed by the National Framework for Children and Young People’s Continuing Care 2016 (the Framework).
17. The DST for children and young people is intended to bring assessment information together in a concise, consistent way. It is designed to help ensure that all relevant needs are assessed and captured.
18. The Framework says the ICB should ensure effective liaison with the Council and effective management of the continuing care process. Joint commissioning arrangements may be needed to ensure the child’s health and social care needs are catered for in the package of care.
19. The Framework says, ICBs and Councils 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.
20. 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.

Background

21. In 2021, Y was 14 and had quadriplegic cerebral palsy as well as other health issues. Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination.
22. Y was receiving a continuing care package at home which involved day care hours and seven nights of nursing care provided by a different agency funded by both the Council and ICB.
23. In August 2021, Y went into hospital with issues with his oxygen levels and breathing. He had a breathing tube fitted in November 2021 and staff there deemed him medically fit for discharge in December 2021. He was discharged home in November 2022 with a package for care provided by the Agency. Y died in October 2023.
24. Mrs X had been in contact throughout this period with the Council and ICB about what she felt were shortcomings in their care, treatment and complaint handling.

Reduction of night nursing provision

25. After Y was deemed fit for discharge, Mrs X wanted a new care agency to provide care to Y and for this to be in place before his discharge. The Council and ICB then commissioned the Agency to take over care once Y was discharged. In January 2022, the ICB wrote to Mrs X letting her know it had reviewed Y’s needs and decided to reduce his nightly nursing support from seven to six nights a week.
26. Mrs X appealed this decision as she said her son needed seven nights constant supervision and two people to move him if required at night.
27. The ICB wrote to Mrs X in August 2022 stating that, as part of the appeal process, it needed to further assess Y and the risk to him. In view of this it would carry on with the original package of seven night two to one care until it carried out a new DST.
28. The nighttime package remained in place until Y’s death.

Analysis

29. From reviewing the DSTs carried out by the ICB, it is unclear what the rationale was for reducing Y’s nighttime provision. It did not properly explain why his needs would be less on one night of the week. In view of this I find fault with the ICB’s decision.
30. This decision led to frustration on Mrs X’s part and this was compounded by the length of time the ICB took to carry out an appeal or review of this decision.
31. However, I have noted that there was no actual reduction in the nighttime care provided to Y as a result of this process and so his care was unaffected by the decision.

Daytime care

32. Mrs X said that the ICB and Council only agreed to 25 hours a week daytime care when she felt that her son needed 24 hour a day care.
33. Following a DST in December 2022, the ICB did not increase Y’s daytime support which was 25 hours a week. Mrs X said he needed a fully NHS funded 24-hour care package,
34. The ICB said a CCC package only provides support for the individual with complex health needs and does not support the family members’ additional needs.
35. It said the 2022 DST was endorsed by the Eligibility Panel in April 2023 and agreed 25 hours per week.

Analysis

36. The National Framework states that ICBs must have a system for reviewing assessments or decisions by a senior panel and or referral to an out of area continuing care team to provide greater impartiality of decision making. Any dispute with a family should go through this process. 36
37. Any package of care should remain in place while the dispute is ongoing.
38. Although we do not have evidence Mrs X raised a dispute directly with the ICB following the 2022 DST, she did approach the Ombudsmen with this issue in April 2023. However, by the time we sent the case back to the ICB to consider, Y had died.
39. We sent the complaint to the ICB for a response. It failed to respond and so we reopened the case and asked it for its response which is outlined above.
40. We do not know if the dispute process would have resulted in a change in the number of hours provided in daytime care to Y. However, I do not find fault with the ICB as by the time it received the dispute it would have not been proportionate to have carried out an appeal as Y had died.

Delay in care package

41. Mrs X said her son was medically fit for discharge in December 2021. However, there were delays in the Council and ICB finding a care agency to support Y’s needs at home. Due to this he stayed in hospital until November 2022.
42. Mrs X had to travel to a different city to visit her son regularly and this placed stress on the rest of the family.
43. Mrs X said that the Council and ICB named one agency, but it could not recruit the right staff, and this left the family waiting for six months. Then in June 2021 the Council and ICB named the Agency as the one who would support Y at home.
44. The Council said that the ICB had the lead on choosing an agency for Y’s home support.
45. The ICB said its predecessor body, the local NHS Clinical Commissioning Group (CCG) passed responsibility for this task to the ICB in July 2021. It was advised of issues experienced by the previous provider to provide the care package.
46. The CCG said in March 2022 that it had identified the Agency and the Agency was recruiting staff to mobilise support ensuring nurses and carers were fully competent in Y’s needs.
47. It said the recruitment picture in the care sector was more challenging after the COVID-19 pandemic.

Analysis

48. The Ombudsmen hold the ICB responsible for the actions of its predecessor CCG.
49. Paragraph 100 of the Framework states that care planning should begin early and consider discharge needs where appropriate. Paragraph 103 states that the package for continuing care should be put in place as soon as possible and the Council and ICB should ensure delays are avoided as far as is possible.
50. Although the previous CCG said it tried to find a suitable agency, and raised the point of a struggle with recruitment, we have not seen sufficient evidence of attempts made by the then CCG, now ICB and Council to commission a care agency which could provide the care Y needed post discharge.
51. This represents fault on the part of the ICB and Council and leaves Mrs X not knowing if her son could have been discharged earlier with a package of care provided by a suitable care agency.

Issues with the Agency

52. Mrs X said that the Agency was an unsuitable one to meet her son’s needs at home and did not realise how frequent her son’s seizures were and that he required increased oxygen therapy. In addition, before Y was discharged from hospital, the ICB and Council did not put a contingency plan in place for him in the event of issues with his care at home.
53. Furthermore, Mrs X said after November 2022, the Agency was not reliable and frequently did not attend, staff made errors with medications and did not understand Y’s conditions.
54. Overall Mrs X said the ICB and Council did not have proper oversight of the Agency’s care and support to her son.
55. The Agency said it had regular meetings with the ICB. It also said that in relation to two incidents to do with medication, it removed the nurses from Y’s care and retrained them. It also said all staff were trained in seizure management before providing Y with care.

Analysis

56. Paragraph 106 of the Framework states that the ICB is responsible for regular review to ensure that the service is of the required level.
57. The ICB did not address all these issues directly, despite the complaint being sent back to it to do so. It told the Ombudsmen that it had already addressed this issue in a letter to Mrs X at the time. In this letter the ICB told Mrs X that the Agency had investigated two incidents and the ICB had requested copies of these reports. It did not go into further detail on what action it would be taking with the Agency.
58. The Agency acted appropriately in removing the nurses and retraining them.
59. The ICB was holding meetings with the Agency but there is little evidence that this addressed the issue of the missed shifts.
60. We find that there is insufficient evidence the ICB was ensuring the Agency met the required number of shifts and this was fault on its part which was a missed opportunity to reassure Mrs X that it had proper oversight over the Agency.
61. In relation to non-attendance, the ICB and Agency have provided information about missed visits and visits which were declined by the family. Mrs X said she declined visits due to a lack of confidence in the Agency workers who attended.
62. From evidence provided by the Agency, it delivered a total of 492 shifts. From December 2022 to October 2023 there were 93 shifts where it was ‘unable to provide care’ due to capacity. In these instances, there were 31 occasions when it employed an external agency to provide care.
63. We do not have sufficient evidence that the Agency was suitable to provide care to Y due to the number of shifts it missed.
64. The Agency was at fault for being unable to provide care on 62 visits, and another 31 where it employed an external agency and this is also the fault of the Council and ICB as commissioners of this care.
65. This breakdown in care meant Mrs X had to take over to cover for a significant proportion of nighttime visits. This led to strain on Mrs X and put Y at risk of harm.
66. The ICB has offered Mrs X £500 as redress for the distress caused to the family at the time, but this does not represent the scale of the issue, when we consider how many shifts the Agency missed before going into how many Mrs X declined due to fears about safety.
67. Regarding a contingency plan if care broke down, the plan was to find nurses from outside agencies or to call an ambulance. The ICB also said Mrs X could provide care as she had been trained to do so. Although there is not a lot of detail in the plan, these were the only options open if care from the Agency broke down.
68. If it became an emergency, then Y would have to go to hospital. If it was a less serious breakdown then the only other people who could provide the care would be external nurses or Mrs X, who had been trained to provide care. Therefore, I have not found fault with the contingency plan although it should not have been implemented on at least 93 occasions.

Complaint handling

69. Mrs X said that her complaints remained unanswered by both the Council and the ICB for a long period which led to frustration.
70. The Council said it was at fault in handling the complaint and offered £500 to Mrs X as redress for the frustration it caused.

Analysis

71. Mrs X brought her complaint to the Ombudsmen after receiving no response from the Council. The Council responded after our involvement.
72. Mrs X had appealed the November 2021 DST and did not receive a response to the appeal until August 2022, in which the ICB stated it was going to carry out another DST. This is fault on the part of the ICB in delaying the appeal for such a long period of time and then further fault in not coming to a conclusion but rather ordering another review.
73. Mrs X came to the Ombudsmen with her case in 2023 and in December 2023 we referred it back to the Council and the ICB for a response.
74. The Council responded in May 2024 and we contacted the ICB for its response.
75. The ICB responded to the Ombudsmen, not Mrs X, in June 2024, seven months after the complaint was referred to it. In this time, it had not updated Mrs X on the progress of the complaint.
76. The Council was at fault with the delays in dealing with this complaint and this led to frustration for Mrs X. However it has now apologised and offered her £500 which is a reasonable remedy to this aspect of the complaint.
77. The ICB took 8 months to consider an appeal, then, as a response to the appeal, decided it would carry out another review.
78. It also took seven months to respond to a complaint after we referred it back to the ICB. It also did not keep Mrs X informed on the progress of its investigation. This was fault on the part of the ICB and it has not done anything to remedy the frustration it caused Mrs X in waiting for a response to both her appeal and complaint.

Back to top

Action

79. I have found faults by the Council and ICB and the Agency have led to distress and frustration for Mrs X. There was also a risk of harm to Y. In cases such as this, we concentrate on the effect on Mrs X, which was the distress of witnessing her son at risk of harm.
80. The Council has acknowledged its fault and the impact on Mrs X in relation to complaint handling. It has apologised and offered a reasonable remedy and so I did not make any recommendations towards the Council in relation to complaint handling.
81. With regard the ICB, I recommend that by 29 October 2025:

• it writes to Mrs X apologising for the distress and frustration caused by the faults in CCC appeals, the Agency and complaint handling; and
• it pays Mrs X £750 to remedy the frustration and distress caused by the faults in complaint handling, and £250 along with the £500 already offered for the distress caused by the commissioning and lack of oversight of the Agency’s care failings.

82. I also recommend by 2 January 2026:

• the ICB writes to Mrs X outlining how it has improved or plans to improve the time scales for dealing with CCC disputes;
• outlines how it has improved or plans to improve its complaint handling in relation to timeliness and keeping complainants informed;
• outlines how it and the Council have improved or plan to improve their commissioning of agencies to provide CCC at home.

83. Regarding the Council, as it had joint responsibility for the care package, w I recommend by 29 October 2025:

• it writes to Mrs X apologising for the distress and frustration caused by the faults with the Agency; and
• it pays Mrs X £750 to remedy the distress and frustration caused by the commissioning and lack of oversight of the Agency’s care failings.

84. I also recommend that by 2 January 2026 the Council writes to Mrs X outlining how it and the ICB have improved or plan to improve their commissioning and oversight of agencies to provide CCC at home.
85. In relation to the Agency, as it had responsibility for delivering the care, I recommend by 29 October 2025:

• it writes to Mrs X apologising for the distress caused by the failings in its care provision; and
• pay Mrs X £2000 to remedy the distress and strain caused by the failings in its care provision.

86. By 2 January 2026 the Agency should write to Mrs X outlining how it will improve its service provision capacity to clients such as Y so that this situation does not arise again
87. The ICB, Council and Agency should provide us with evidence they have complied with the above actions.
88. Under our information sharing agreement, we will share this decision with the Office for Standards in Education, Children’s Services and Skills (Ofsted).
89. Under our information sharing agreement, we will share this decision with the Care Quality Commission (CQC).

Back to top

Decision

90. I find fault with the Council, ICB and Agency causing injustice to Mrs X. I have made recommendations to the Council, ICB and Agency to remedy the situation.

Investigator’s decision on behalf of the Ombudsmen

Back to top

Investigator's decision on behalf of the Ombudsman