Summary: The Ombudsmen found fault with the way a CCG managed the Children’s Continuing Care process for a child with severe disabilities. They recommended the CCG apologise for this fault and pay the complainants a financial remedy in recognition of the distress this caused them. They also found fault with the Council’s delayed assessment of the parents’ needs as carers. The Council agreed to apologise to the complainants. The Ombudsmen found no fault with the actions of a Trust involved with the child’s care.

The complaint

1. The complainant, who I will call Mrs T, is complaining about Central Bedfordshire Council (the Council), Essex Partnership University NHS Foundation Trust (the Trust) and Bedfordshire Clinical Commissioning Group (the CCG).
2. Mrs T is complaining about the care and treatment provided to her son, Child B, by the Council, Trust and CCG. In addition, Mrs T complains the same agencies failed to support her and her husband as carers.
3. In the interests of brevity, I have not set out each aspect of the complaint here. However, I have addressed these matters in detail below.

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The Ombudsmen’s role and powers

4. 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
5. If the Ombudsmen find evidence of fault causing injustice, they may suggest a remedy. 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 (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1)).
6. 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))

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How I considered this complaint

7. In reaching this final decision, I took account of the information Mrs B provided to the Ombudsmen. I made enquiries of the Trust, CCG and Council and took account of the documents and comments they provided, including the clinical records.
8. I took account of relevant law, statutory guidance, and local policy.
9. In addition, I considered comments from all parties on my draft decisions of November 2017 and November 2018.

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What I found

Relevant guidance and legislation

Local authority responsibilities

10. Section 17 of the Children Act 1989 (the 1989 Act) places a duty on local authorities to safeguard the welfare of ‘children in need’. The 1989 Act categorises a child as being ‘in need’ if he is disabled.
11. Section 17 of the 1989 Act also provides local authorities with specific powers and duties to assess the needs of children considered to be ‘in need’ and to provide services and support to these children and their carers.
12. Section 2 of the Chronically Sick and Disabled Persons Act 1970 (the 1970 Act) provides further information about the services a local authority should provide for a child with disabilities. This includes:

• the provision of practical assistance in the home;
• assistance with travel to activities and recreational and educational facilities;
• arranging for any adaptations or equipment ‘designed to secure greater safety, comfort or convenience for the child’.

Children’s Continuing Care

13. A continuing care package is required when a child or young person has need arising from disability, accident or illness that cannot be met by existing universal or specialist services alone. The Department of Health’s National Framework for Children and Young People’s Continuing Care (the 2010 Framework) is the key guidance about Children’s Continuing Care for children and young people. At the time of the events Mrs T is complaining about, the 2010 version of the guidance was in effect. This was later superseded by revised guidance in January 2016.
14. The 2010 Framework states that where a child is eligible for Children’s Continuing Care funding the local CCG is responsible for care planning, commissioning services and case management.
15. The first stage of the Children’s Continuing Care process is an assessment by a children and young people’s health assessor. Section 22 of the 2010 Framework says the assessment should demonstrate evidence-based professional judgement in four specific areas:

• ‘The preferences of the child or young person and their family;
• Holistic assessment of the needs of the child or young person and their family, including carer assessment; and
• Reports and risk assessments from the multidisciplinary team.
• The children and young people’s Decision Support Tool.’

16. The 2010 Framework says the evidence and outcomes of the assessment should then be collated within the Decision Support Tool (DST). The DST is a document that allows the assessor to allocate the child a score in a number of care domains, such as cognition, behaviour and mobility.
17. The case will then be considered by a multi-agency panel, which will decide whether the child is eligible for Children’s Continuing Care funding. The Children’s Continuing Care Framework says the child and their family should be given ‘a clear written explanation for the decision’.

Children’s Continuing Care disputes

18. Section 43 of the 2010 Framework sets out that ‘[CCGs] will have a local complaints procedure in place to respond promptly to any request to review disagreements voiced by the child or young person or their family or carer about any aspect of the continuing care process.’
19. The same section of the 2010 Framework says CCGs will have a system ‘for review of assessments or decisions by a senior panel and/or by referral to an out-of-area continuing care team to provide greater patient confidence in the impartiality in decision-making.’

Complaints regulations

20. The Local Authority Social Services and National Health Service Complaints (England) Regulations 2009 (the complaints regulations) set out the responsibilities of local authorities and NHS bodies in respect of complaint handling.
21. The complaints regulations say the organisation responsible for handling the complaint should provide a substantive response within six months of receiving it.

Key facts

22. Child B is 14 years old. He suffers from a rare genetic mutation. This causes him to suffer a number of severe symptoms and related health conditions. These include intractable epilepsy (a form of epilepsy that is resistant to treatment), developmental delay, scoliosis and reflux.
23. By 2014, Child B had been under the care of the Trust’s Children’s Community Nursing Care Team (the Care Team) for several years. He received four nights of care per week from this team. This was funded by the Council and CCG. His care package also included eight hours of day care per week from two carers during school holidays.
24. In March 2015, the Trust reviewed the eligibility criteria for the Care Team. The Trust established that a child must have a primary nursing or clinical need to be eligible for Care Team services.
25. Later that month, Child B underwent a diagnostic assessment focusing on his epilepsy. The CCG said the assessment found no evidence to suggest Child B required intensive night care. The report was distributed to Mrs T and the professionals involved in Child B’s care in June 2015.
26. On 13 July 2015, a member of the Care Team completed a DST on behalf of the CCG. The DST recorded that Child B had ‘high’ needs in two areas. However, the DST noted that Child B’s needs in respect of his seizures were only ‘moderate’. This was largely based on the epilepsy diagnostic assessment report.
27. In July 2015, professionals discussed Child B at a Joint Allocation Panel meeting. Mrs T had applied for additional hours of support. The Joint Allocation Panel agreed to continue the existing care package, but declined the request for additional hours of support.
28. A nurse from the Care Team met with Mrs T, on 29 July 2015, to discuss the DST. The nurse said Child B did not meet the eligibility criteria for Children’s Continuing Care funding and would no longer be eligible for Care Team services as a result. The nurse explained the Council would now meet the majority of Child B’s care needs. The nurse said professionals felt Child B no longer needed the same level of intensive night time support.
29. On 12 August 2015, the Council called a multidisciplinary meeting to discuss Child B’s ongoing care. Mr and Mrs T’s GP expressed concern about the impact of caring for Child B on their mental and physical health. As a result, the Council agreed to undertake an assessment of the family’s needs.
30. A member of the Care Team visited Mrs T on 18 August 2015 to discuss Child B’s care and explain that there would be a gradual reduction in the hours of night support provided by the Care Team.
31. On 8 September, the Care Team reduced Child B’s night care from four to three nights per week. The Care Team reduced this again to two nights on 14 September 2015.
32. On 9 October 2015, Mrs T met with health and social care professionals to discuss Child B’s ongoing needs. Mrs T said she felt care should remain in place while the family challenged the Children’s Continuing Care funding decision.
33. At a further meeting on 15 October 2015, the Joint Allocation Panel agreed that funding for two nights of care per week would remain in place for the next six months to support the transition to social care.
34. The Care Team completed a further DST in October 2015. This assessment found Child B still did not meet the criteria for Children’s Continuing Care funding.
35. On 27 October 2015, Mrs T submitted a formal challenge to the Children’s Continuing Care decision. Specifically, Mrs T argued that Child B’s nutritional needs should be classified as ‘high’. She said recent Speech and Language Therapy (SALT) assessments supported this. However, the CCG did not uphold the family’s complaint.
36. On 28 January 2016, the CCG advised Mrs T that it would no longer fund care for Child B from 23 February 2016.
37. The CCG convened a panel on 1 March 2016 to discuss the case again. The panel discussed each of the disputed care domains and upheld the decision to withdraw Children’s Continuing Care funding.
38. However, the CCG completed a further DST following this. The assessor noted that ‘[b]ased on the DST scoring, [Child B] would not meet [Children’s Continuing Care] funding. However, his parents have disclosed that they are exhausted and are currently unable to wake up to him at night. This poses a safety risk. It is recommended to put care in for a period of 3 months and review the case in 3 months.’
39. This was discussed by the Joint Allocation Panel in July 2016. The Joint Allocation Panel agreed a new arrangement. This involved the Council funding two nights of care per week and the CCG funding a further one night per week.
40. The CCG completed a final DST on 2 March 2017. This marked Child B’s seizure needs as ‘severe’ and found he should be eligible for Children’s Continuing Care funding. The Joint Allocation Panel discussed the case again on 16 March 2017 and agreed to a further night of care per week. The CCG was to fund this. This meant Child B received four nights of care per week in total.

Analysis

Eligibility criteria

41. Mrs T complained the CCG’s decision to withdraw care funding for Child B in July 2015 was flawed. She said it was based on incorrect information and did not take proper account of her views.
42. It is important to be clear that the Ombudsmen cannot decide whether a child is eligible for Children’s Continuing Care funding. Rather, they consider whether the assessing organisations have acted in accordance with the Children’s Continuing Care Framework in assessing that person’s needs.
43. The CCG said the DST completed by the Care Team represented a comprehensive assessment of Child B’s needs. It said the Care Team updated this regularly following input from the CCG. In addition, the CCG said professionals discussed Child B’s care at two multidisciplinary meetings in July and October 2015. The CCG said it had also invited Mr and Mrs T to Children’s Continuing Care review meetings. The CCG said the DST domains do not score parental wellbeing as part of the eligibility criteria for Children’s Continuing Care and so this would not have been taken into account
44. The Care Team completed the DST on 13 July 2015. The assessor found Child B had ‘high’ needs in two of the ten care domains (mobility and communication), with ‘moderate’ needs in six further domains. The assessor found Child B had ‘moderate’ seizure care needs, largely on the basis of the epilepsy diagnostic assessment.
45. The Joint Allocation Panel discussed Child B’s case at a meeting on 16 July 2015. The notes of this meeting record that ‘[h]ealth colleagues informed panel [Child B] will meet health criteria. His care needs are still very high but not the epilepsy.’
46. However, this was contradicted by the notes of a member of the Care Team who attended the meeting. She recorded that she ‘[a]ttended [Joint Allocation Panel] to discuss DST scoring that in our opinion may reduce epilepsy domain to moderate, as specialist epilepsy report has stated less intensive monitoring required…I also discussed how [Child B’s] clinical nursing needs do not meet our care team criteria either.’
47. A member of the Care Team subsequently discussed the DST with Mrs T on 29 July 2015. She informed Mrs T ‘that [Child B] no longer met criteria for continuing care eligibility or CCN care team provision.’
48. I could not identify in the records a clear decision-making process in respect of Child B’s eligibility for Children’s Continuing Care funding. The Joint Allocation Panel discussed the case on 16 July 2015. However, the notes of this meeting suggest it was convened to consider an application from Mrs T for additional support rather than to reach a view on Child B’s Children’s Continuing Care eligibility.
49. The notes show there was brief discussion around the epilepsy diagnostic report, but I found no evidence of any detailed consideration of the DST or the care domain scores. Indeed, it is not clear from the notes of this meeting whether professionals considered Child B to be eligible for Children’s Continuing Care funding or not.
50. The DST did not record Mr and Mrs T’s views on Child B’s needs. Similarly, the Joint Allocation Panel does not appear to have discussed this in any detail at the meeting on 16 July 2015. Indeed, it was not until 29 July 2015 that the Care Team advised Mr and Mrs T of the DST score and the implications this would have for Child B’s eligibility.
51. The 2010 Framework emphasises that, when assessing a child’s eligibility for Children’s Continuing Care funding, the assessor should take into account the views of the child and their family. This is to ensure the assessment is an holistic consideration of the child’s needs and those of the parents.
52. There is no evidence to suggest the CCG took account of Mr and Mrs T’s needs and views in this case. This means the CCG’s consideration of Child B’s eligibility for Children’s Continuing Care funding was not in keeping with the 2010 Framework. This is fault.

Children’s Continuing Care appeal

53. Mrs T complained that when she appealed the CCG’s Decision Support Tool (DST) her views were ignored. Mrs T complained that the CCG failed to complete a comprehensive consideration of Child B’s needs that took her views into account.
54. The professionals involved in Child B’s care convened a meeting on 12 August 2015 to discuss the transition of Child B’s care from the Care Team to the Council.
55. Mrs T complained about the DST scores in an email on 20 August 2015. She complained she had not been present at the meeting on 12 August 2015 and queried why the DST had not been discussed with her before decisions had been made about Child B’s care.
56. A nurse from the Care Team visited Mrs T on 4 September 2015 to discuss her concerns in more detail. In an email to colleagues, the nurse noted that Mr and Mrs T felt Child B’s nutritional needs were ‘high’ due to his continued reflux. The nurse noted that she would request input from a SALT.
57. The Trust later completed a more detailed DST. This included Mr and Mrs T’s views on Child B’s care needs.
58. With regards to Child B’s nutritional needs, the DST recorded that he continued to experience problems with reflux despite taking medication to control this. The assessor noted that he had been referred to a gastroenterologist. The DST recorded Child B’s nutritional need as ‘moderate’. As a result, the CCG again found that Child B was not eligible for Children’s Continuing Care funding.
59. Mrs and Mrs T met professionals on 9 October 2015. The notes of this meeting show detailed discussion about Child B’s needs and the DST scoring. The notes show Mrs T disagreed with the nutritional score as it was based on a SALT assessment that was, by that point, several months old.
60. A SALT subsequently reviewed Child B on two occasions in October 2015. She identified several areas of risk in relation to Child B’s nutritional care, including fatigue, seizure activity and positioning. The Trust incorporated this into the DST and concluded that Child B’s scoring in this area remained ‘moderate’.
61. Mrs T complained about the decision in an email dated 27 October 2015. She said the CCG failed to carry out an assessment that included the needs of the family as a whole, despite her GP raising concerns about her health. Mrs T said the CCG failed to hold a multi-agency meeting to discuss the DST. Furthermore, she queried the DST nutritional scoring of ‘moderate’ and said this was contradicted by other SALT input.
62. The CCG responded on 23 December 2015. It said ‘[t]he DST domains do not score parental wellbeing as part of the eligibility criteria for Continuing Care funding. Therefore concerns about the physical and mental health of you and your partner would not have been taken into consideration whilst the health needs of [Child B] were assessed.’ However, the CCG said Mr and Mrs T’s need for support was documented in a carer’s assessment. It said the GP was best placed to arrange this support. The CCG also said the SALT who reviewed Child B in October 2015 was appropriately qualified and had access to all relevant information.
63. The records make clear that Child B has extensive care needs and that these had an ongoing impact on Mr and Mrs T. Indeed, in August and December 2015, Mr and Mrs T’s GP expressed concern about the physical and mental strain they were under.
64. I note the CCG’s comment that a carer’s assessment was in place and that information from this was taken into account.
65. However, Annex A (Section 22) of the 2010 Framework sets out that the DST should be used to pull together all of the key areas of assessment, including the ‘holistic assessment of the child or young person and their family, including carer assessment.’
66. I found no evidence in the DST to suggest professionals carried out a detailed consideration of Mr and Mrs T’s needs in the context of the Children’s Continuing Care funding decision. In my view, the second DST does not constitute a holistic assessment of the family, therefore, and is not in keeping with the 2010 Framework. This is fault.

Children’s Continuing Care review panel

67. Mrs T said the CCG offered the family an independent panel in March 2016 to reconsider the Children’s Continuing Care decision. However, Mrs T said the panel were not independent. She said the panel (which included professionals from the CCG, Council and Trust) would not let her hear all the evidence presented. She said the CCG recorded the panel meeting, but did not record the portion of the meeting for which she left the room. In addition, Mrs T said the notes of the meeting did not reflect any detailed consideration of Child B’s needs but rather appeared to be simply a record of the panel’s decision. Mrs T said the panel also failed to seek information from other professionals.
68. The 2010 Framework says that CCGs must have a process ‘for review of assessments or decisions by a senior panel and/or by referral to an out-of-area continuing care team to provide greater patient confidence in the impartiality in decision-making.’ The meeting of 1 March 2016 involved specialist senior managers from the CCG, Council and Trust. This was in keeping with the requirements of the 2010 Framework. I found no evidence that would lead us to question the impartiality of the panel. The CCG acted without fault in this respect.
69. The notes of the meeting show Mr and Mrs T challenged the rating of Child B’s nutritional and seizure needs as ‘moderate’. They argued that, although the severity of Child B’s seizures had reduced, he continued to experience a high volume of them throughout the night.
70. Mr and Mrs T also said that reflux remained a problem for Child B. The meeting heard that two gastroenterologists had reviewed Child B in relation to this. These reviews had proposed a possible surgical option. The Nissen fundoplication is a procedure in which the upper stomach is folded around the oesophagus to prevent reflux. This procedure also prevents oral feeding, meaning Child B would have required a gastrostomy (a surgical procedure to insert a feeding tube through the abdominal wall into the stomach). Mr and Mrs T were unwilling to proceed with surgery as one of the gastroenterologists felt there was no guarantee the procedure would be successful.
71. In addition, Mr and Mrs T said Child B needed to be repositioned throughout the night due to his hip dysplasia. This is a congenital condition causing abnormal development of the hip joint and increased risk of dislocation.
72. The professionals discussed the disputed care domains once Mr and Mrs T had left the room. The panel’s decision-making is documented in considerably less detail than the preceding discussion involving Mr and Mrs T. In relation to Child B’s seizures, the panel noted that ‘the unpredictability of the seizures could be an issue.’ Despite this, the panel agreed a marking of ‘moderate’ in this domain. Similarly, the panel found that there was outstanding concern around whether or not Child B was at risk of aspiration (the inhalation of food or other foreign material into the lungs and respiratory system). However, the panel again agreed a ‘moderate’ marking. In my view, the panel’s decisions, and the reasons for them, were not clearly recorded.
73. Section 149 of the 2010 Framework emphasises ‘[t]he level of need in a single domain may not on its own indicate that a child or young person has a continuing care need, but will contribute to a picture of overall care needs across all domains.’ I found no evidence to suggest the panel considered in any detail the cumulative impact of Child B’s seizures, reflux and hip dysplasia on his night care needs. This is fault on the part of the CCG.
74. I am unable to say whether the panel would have made a different decision even if it had acted without fault. However, this is a significant area of concern given that Mr and Mrs T repeatedly raised concerns about the strain Child B’s night care was placing on them.

Children’s Continuing Care dispute

75. Mrs T complained that the Council failed to challenge the CCG’s Children’s Continuing Care funding decision, even though the Council agreed Child B’s needs were primarily health care (rather than social care) related. In addition, Mrs T says the Trust, as the agency with most experience of Child B’s care should have supported the family.
76. The Council said the Children’s Continuing Care funding decision had been the responsibility of the CCG and that its role had been restricted to working with health colleagues concerning Child B’s social care needs. The Council said Mrs T advised it in October 2015 that she would be challenging the decision. The Council said it agreed not to make any further changes to Child B’s care package until the CCG had considered Mrs T’s representations.
77. The Trust said Care Team staff regularly made clear that Child B had complex needs that would have to be met by other agencies once he was no longer in receipt of Children’s Continuing Care funding.
78. It is important to be clear that the CCG holds sole responsibility in law for Children’s Continuing Care funding. This means that, while other agencies provide input into the Children’s Continuing Care assessment process, it is ultimately a matter of judgement for the CCG as to whether a person is eligible for Children’s Continuing Care funding. The Council is correct to say, therefore, that its role in this process was relatively limited.
79. The case records reflect regular multi-agency discussion about Child B’s care needs. The notes of these meetings support the Trust’s response that members of the Care Team emphasised the complexity of Child B’s care needs to other professionals. One example was the meeting of 9 October 2015. At that meeting, a member of the team pointed out that, while Child B no longer required intensive night support for his epilepsy, he did require regular repositioning and this made things harder for Mr and Mrs T.
80. Statutory responsibility for Children’s Continuing Care funding rests with the CCG and the roles of the Trust and Council within this process were limited. I am satisfied there is evidence that staff from both organisations participated appropriately in regular case discussions about Child B’s care. I found no fault on the part of the Trust and Council here.

Meetings

81. Mrs T complained that the Council and CCG failed to invite her to a meeting to discuss Child B’s ongoing care on 12 August 2015, informing her that she did not need to attend as this was a budgetary meeting. In addition, Mrs T said she could not attend a further meeting in October 2015 but this also went ahead in her absence.
82. Following a Joint Allocation Panel meeting on 16 July 2015, a Care Team nurse recorded that a colleague would ‘convene meeting of suitable professionals to discuss way forward planning for [Child B] and his parents needs raised in the specialist report.’ This appears to refer to the epilepsy diagnostic assessment report.
83. The records show Trust staff spoke with Mr and Mrs T numerous times between this date and the meeting on 12 August 2015. However, I found no record of any discussion with Mrs T about this meeting during this period.
84. The notes of the meeting suggest it was to allow professionals to agree a plan to manage the transition of Child B’s care from health to social care services. It is also recorded in the notes that ‘[Child B’s] parents, [Mr and Mrs T] are aware a professionals meeting would be held to discuss the funding and practicalities of transition to a new care provider.’
85. Mrs T subsequently complained that she had not been invited to the meeting. A nurse from the Care Team spoke to Mrs T about this on 4 September 2015. She noted that she had ‘apologised to [Mr and Mrs T] that she had organised the meeting and although she thought she had agreement to meet with professionals acknowledged it may not have been clear that this included arrangements of how this may happen, not just budgets.’ The nurse also noted that ‘I hope they are now reassured that we made no decisions about them without them.’
86. The Care Act 2014 places a general duty on health and social care agencies to work together to provide care. In this case, where there is a complex interaction between several agencies, it was in keeping with accepted good practice to hold a multidisciplinary meeting to discuss Child B’s care. These meetings enable the professionals present to agree a clear and consistent care strategy.
87. On balance of probabilities, I consider it likely the confusion in this case arose due to a misunderstanding rather than any deliberate attempt to mislead Mrs T. In the circumstances, I consider the nurse’s apology to be reasonable.
88. The Council scheduled a further meeting for 2 October 2015. However, Mr and Mrs T could not attend, having only been advised on 30 September 2015 that the meeting was to take place. Mr and Mrs T asked for the meeting to be rescheduled.
89. In its complaint response of 12 May 2016, the Council said the meeting was rescheduled for 9 October 2015, when Mr and Mrs T were able to attend.
90. A professionals meeting did go ahead on 2 October 2015 involving representatives from the Trust, Council and CCG. However, this meeting recognised that a further meeting would need to be held with Mr and Mrs T ‘to discuss processes and ensure they are involved in decision making’. The meeting on 9 October 2015 subsequently went ahead as planned.
91. Again, I saw no evidence to suggest professionals excluded Mr and Mrs T from the meeting on 2 October 2015. The records show staff were mindful of the need to include them in decisions about Child B’s care. This is reflected in the record of the meeting on 9 October 2015, which shows detailed discussion of the family’s needs and views.
92. On balance, I am satisfied professionals involved the family in discussions around Child B’s care. I found no fault on the part of the Council and CCG on that point.
93. However, as I have said above, the Children’s Continuing Care process between July 2015 and March 2016 did not reflect the family’s needs and views.

Reduction of services

94. Mrs T complained that the Council, Trust and CCG reduced services to Child B despite concerns raised by his GP that the family was already under considerable stress. Mrs T said they did so despite the fact there was ongoing dispute about what care and support the family required. Mrs T said the agencies referred in correspondence to the family receiving four hours of day care per week, but that this was actually four hours per month.
95. The Council said the Joint Allocation Panel made the decision Child B’s care package would need to be met by solely by social care at a meeting on 16 July 2015. The Council said the Joint Allocation Panel made the decision to continue the current care package while professionals agreed a transition plan. The Council said it agreed to an interim package of two nights of care per week for six months as Mr and Mrs T were in dispute. The Council accepted that it had referred to four hours of day care per week in error and acknowledged this should have been four hours per month.
96. It is understandable Mr and Mrs T were frustrated by the decision to reduce Child B’s night care while they remained in dispute with the CCG. The Children’s Continuing Care Framework was updated in 2016 to include an instruction that care should remain in place until any dispute has been resolved. Nevertheless, this was not a requirement under the Children’s Continuing Care Framework as it stood in 2015 (the 2010 Framework).
97. The records show the agencies involved in Child B’s care did attempt to manage a staged reduction of services following the withdrawal of Children’s Continuing Care funding. This was in keeping with national guidance as it stood at that time. I found no fault on the part of the Council, Trust or CCG in this matter, therefore.

Day care

98. Mrs T complained that the Council told her it would provide her with limited hours of day care, but only once the total hours of night care Child B had been receiving were reduced. Mrs T says it was unacceptable to offer care based on a proviso like this.
99. The Council addressed this issue in its response to my enquiries. It said the Joint Allocation Panel made the decision on 15 October 2015 to retain two nights of care per week to support the transition of Child B’s care from health to social care services. The Council said it intended to reduce the night care to one night per week and introduce some additional day care to support the family. This was to involve four hours day care per month and was intended to replace the previous cleaning allowance.
100. The care records and multidisciplinary meeting notes show the Council was attempting to react to the family’s needs within the limitations of its social care remit. One example of this was the period in September 2016 in which the Council increased the level of day care to support Mrs T’s recovery from illness.
101. While I understand Mrs T’s concerns, I found no evidence to suggest the Council was attempting to withhold day care until night care had been reduced. Rather, the records show the Council recognised Mr and Mrs T may need additional support once night care was reduced and was exploring ways to provide this. I found no fault on the part of the Council in this respect.

Council support

102. Mrs T complained that the Council referred to her and her husband as anxious parents but provided no support.
103. This was discussed at the multidisciplinary meeting on 12 August 2015. Further to the diagnostic assessment, the meeting recognised ‘the importance of supporting both parents psychologically and emotionally, as a couple, to process their worries and concerns.’ The meeting agreed that the family’s GP, who was also present, would contact Mr and Mrs T to ‘discuss their needs and what help/support and treatment options may be beneficial.’
104. The issue of support for Mr and Mrs T was discussed again at a meeting on 18 August 2015. At that point, the GP had not yet been in touch. However, Mr and Mrs T were advised by a Council officer that the GP would be able to prescribe sleeping medication on a short-term basis if Mrs T was struggling to sleep.
105. On 20 August 2015, Mrs T requested a meeting to discuss Child B’s care. She also emphasised that ‘[Mr T] and I are psychologically fragile, which has been confirmed by our doctor.’
106. The GP subsequently wrote a letter on 16 December 2015 to express concern about the impact on Mr and Mrs T of providing additional care for Child B.
107. This led the Council to undertake a carer’s assessment in April 2016. This found the support in place at that time was adequate to meet Mr and Mrs T’s needs.
108. In May 2016, the Council undertook a Child and Family Assessment. Following this, the Joint Allocation Panel made the decision to increase overnight support to two nights per week for a four-week period.
109. I recognise that the question of support for Mr and Mrs T is a complex one as it is bound up with the amount of night care available to Child B.
110. Nevertheless, the GP’s letter of December 2015 should have prompted a comprehensive assessment of Mr and Mrs T’s needs. While I accept the family’s care was discussed more generally at meetings in the intervening period, this was not an adequate substitute for a proper assessment.
111. It was over three months before the Council undertook a carer’s assessment (in April 2016) and a further month before it undertook a child and family assessment (in May 2016). This is fault and represented a missed opportunity to assess Mr and Mrs T’s needs as carers at an earlier stage.

Duty of care

112. Mrs T complained that the Council failed to accept its duty to provide care under the Chronically Sick and Disabled Persons Act 1970 and did not adequately explain what care it had provided to Child B to meet its obligations under that act.
113. The Council said it provided support in three key areas. The first of these was practical assistance in the home (including overnight care, cleaning and respite). The second area the Council identified was supporting Child B’s transport needs during the week and in the school holidays. Finally, the Council said it provided adaptations and equipment in the family home.
114. The records show the Council did provide Child B with extensive support. This included night care, evening care, day care (during school holidays) and transport to a holiday play scheme. The Council also provided a regular cleaning service and occasional respite for Mr and Mrs T.
115. I accept Mr and Mrs T were concerned the family was not receiving the level of support it required from local health and social care services in general. I have commented on this in relation to the Children’s Continuing Care decision-making process and the delay in carrying out a carer’s assessment.
116. However, I am satisfied the Council provided support that was in keeping with the Chronically Sick and Disabled Persons Act 1970. I found no fault here.

Care delays

117. Mrs T complained that the CCG eventually agreed to fund additional care following another DST in 2016, but it took a further three months before this care was put in place. She said this delay was partly caused by the Trust’s refusal to allow care agency staff to shadow its own staff.
118. The CCG said the Joint Allocation Panel agreed to fund two additional nights of care per week following a meeting on 21 July 2016. The CCG acknowledged this extra night care did not commence until 12 September 2016, around eight weeks later.
119. The Trust said it had allowed shadow shifts initially. However, the Trust said it was unable to support care agency staff when asked to do so more than six months after the Care Team had stopped providing support to Child B. The Trust said this was because Care Team staff would not have had up-to-date training and competencies. I find no fault by the Trust here.
120. The delay appears to have arisen primarily because the CCG found it difficult to identify a suitable care provider and arrange training. Given Child B’s complex needs, this is understandable to an extent. I accept this would have contributed to the delay in putting care in place for Child B. Nevertheless, the evidence shows there was a period of several weeks during which Child B did not receive the care he required. The CCG was partly responsible for this delay. This is fault.
121. In response to my draft decision, the CCG provided emails and comments which it said was evidence of six additional hours a week. This, it said, represented the respite provision. However, in my view, six hours per week does not amount to two additional nights of care per week. I am also not satisfied this provision was in addition to the care to which the family was entitled. It therefore remains my view that there is fault by the CCG in relation to this part of the complaint.

Communication with family

122. Mrs T complained that the CCG and Council bullied, manipulated and coerced the family and Mrs T’s key worker.
123. The Council addressed this issue in its response to my enquiries. It accepted that Mr and Mrs T were not in agreement with all of the decisions made by its officers. However, it said there was no evidence the Council had behaved inappropriately towards the family or their key worker.
124. The health and social care records show there were times when the family’s relationship with the Council and CCG became strained. This is understandable in my view given the complexity of the case and the need for extensive professional input into Child B’s care.
125. I appreciate Mrs T’s strength of feeling on this issue. Nevertheless, I found no evidence in the records that Council or CCG staff acted inappropriately. In the absence of any independent evidence to help us determine what took place, I am not persuaded that further investigation would enable us to make a robust decision in this matter.

Complaint handling

126. Mrs T complained that the Council and CCG failed to handle her complaint in a timely manner and subjected it to repeated delays. Mrs T said a Council officer was also allowed to investigate a complaint she had made about him.
127. Mr and Mrs T initially raised concerns about the Children’s Continuing Care decision in August 2015.
128. The CCG provided two written responses to the complaint (in December 2015 and April 2016). This was in keeping with the expectations set out in the complaints regulations.
129. Nevertheless, there appears to have been confusion on the part of the CCG as to whether Mr and Mrs T’s concerns should be dealt with as a Children’s Continuing Care appeal or a formal complaint. As a result, the CCG did not make clear to Mr and Mrs T how it would address their concerns or outcomes they could expect. This is fault and caused unnecessary confusion.
130. The CCG acknowledged and apologised for this in its final response in April 2016. I have also addressed this in my recommendations.
131. Mr and Mrs T first complained to the Council in February 2016. The Council addressed the complaint later that month.
132. In the meantime, Mr and Mrs T made a further complaint incorporating several health and social care issues. As the complaint was again centred upon the Children’s Continuing Care process, the Council and CCG agreed the CCG would coordinate a joint response.
133. However, the Council became concerned that the need for a joint response was causing delay and so decided to respond separately to the social care issues. In fact, it did not respond until May 2016, by which point the CCG had already responded.
134. The Council responded to both of Mr and Mrs T’s complaints within the six months set out by the complaints regulations. I found no fault on the part of the Council, therefore.
135. Mr and Mrs T’s complaint was investigated initially by the relevant head of service at the Council. In the circumstances, I do not consider there to have been a conflict of interest here given that the issues Mr and Mrs T raised did not directly concern him. I found no fault on the part of the Council in that respect.

Injustice

136. I found the CCG failed to carry out an assessment of Child B’s eligibility for Children’s Continuing Care funding in keeping with the Children’s Continuing Care Framework. I found it similarly failed to give appropriate consideration to Mr and Mrs T’s appeal.
137. The Children’s Continuing Care assessment process is complex. It involves input from numerous health and social care professionals and consideration of ten different care domains. In my view, it is not possible to say with any certainty that the CCG would have made a different decision on Child B’s eligibility even if it had carried out an appropriate assessment in July 2015. Similarly, I am unable to say whether a robust consideration of Mr and Mrs T’s representations would have led to a different outcome.
138. Despite this, the fault I have identified on the part of the CCG caused the family considerable and avoidable distress over a protracted period of time. It also put them to unnecessary time and trouble as they were required to correspond extensively with all of the organisations involved to put their views across.
139. This was compounded by the Council’s delay in carrying out a comprehensive assessment of Mr and Mrs T’s needs. This meant an opportunity was missed to explore at an earlier stage whether Mr and Mrs T required additional support.
140. However, I am satisfied Mr and Mrs T did not miss out on additional social care support during this period as, when the Council did complete a carer’s assessment in April 2016, this found the level of support in place at that time was adequate to meet the family’s social care needs.
141. Nevertheless, I accept the delay added to Mr and Mrs T’s frustration.
142. In addition, the CCG’s failure to address Mr and Mrs T’s concerns clearly put them to additional time and trouble and increased their frustration unnecessarily.

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Recommendations

143. I identified several areas of fault on the part of the CCG in relation to its handling of the Children’s Continuing Care process. To address the fault I have identified, the CCG should, within one month of this final decision statement, write to Mr and Mrs T to:

• Apologise for its failure, in July and October 2015, to robustly assess Child B’s eligibility for Children’s Continuing Care funding in keeping with the guidance set out in the Children’s Continuing Care Framework.
• Apologise for the failure of the Children’s Continuing Care review panel, in March 2016, to properly record its reasoning and decision making and failure to consider Child B’s needs in a holistic way.
• Apologise for its delay in putting in place additional night care for Child B following a Joint Allocation Panel meeting in July 2016.
• Pay Mr and Mrs T £500 in recognition of the avoidable distress and frustration caused to them by these areas of fault.
• Pay Mr and Mrs T £250 in recognition of the time and trouble they were put to appealing the Children’s Continuing Care decisions in July and October 2015.

144. The CCG should also, within three months of this final decision statement:

• Review its Children’s Continuing Care procedures to ensure eligibility assessments are carried out in accordance with the 2016 Framework. This review should consider how the CCG will ensure assessments represent a holistic consideration of a child or young person’s needs alongside those of their family. The CCG should share the results of this review with Mr and Mrs T and the Ombudsmen.

145. In addition, I found fault on the part of the Council in relation to its failure to carry out a timely carer’s assessment for Mr and Mrs T. Mr and Mrs T were without a robust assessment for this period. The Council should, within one month of this final decision statement, write to Mr and Mrs T to:

• Apologise for its failure to carry out a timely assessment of their needs when the family GP raised significant concerns about their welfare in December 2015.

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Final decision

146. I found fault on the part of the CCG in relation to its handling of the Children’s Continuing Care process for Child B. I also found fault on the part of the Council in terms of its delay in assessing Mr and Mrs T needs as carers.
147. I found no fault on the part of the Trust.
148. I have now completed my investigation on this basis.

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Investigator's decision on behalf of the Ombudsman