24. We know at the annual review in 2023 the ICB weighted B’s needs as high in four domains (breathing, eating and drinking, mobility and skin and tissue viability). At the annual review in 2024 it weighted three domains as high (breathing, eating and drinking and mobility). In May 2024 when the panel re-reviewed B with the new evidence, it found he had one high level of need (eating and drinking). We have provided this information for context. We cannot compare assessments. We have considered what B’s needs were at the time of the review we are looking at.
25. Miss A has told us she disagrees with how the ICB considered the breathing and mobility domains. We will look at them in turn.
Breathing domain
26. Miss A disagrees with the way the ICB considered the breathing domain. She feels B still had a high level of need at the time of the review in May 2024.
27. She says B needed a high volume of oxygen and care for it. She says at his 2023 review he needed a smaller volume of oxygen but was eligible for CYPCC. He cannot go to nursery if he is on oxygen. When B is poorly, he is very unpredictable, he can require anything from a small volume of low flow oxygen to ten litres of oxygen, six hourly nebulisers, four hourly inhalers and constant observations of saturations. He requires multiple hospital visits. Alongside the family he requires a skilled care team that can look after him.
28. The ICB said B had a moderate level of need at the time of the May 2024 review. His breathing needs had improved by this time. He had intermittent oxygen, which he did not require daily. His mother managed and monitored his oxygen levels. A letter from B’s consultant in January 2024 said that B had been off oxygen for three months.
29. The ICB felt B’s frequent illnesses and chest infections were in line with the moderate domain for breathing.
30. The relevant parts of the DST descriptor for a high level of need are:
‘Requires high flow air/oxygen to maintain respiratory function overnight or for the majority of the day and night or requires continuous high level oxygen dependency, determined by clinical need.’
31. The relevant part of the DST descriptor for a moderate level of need is:
‘Intermittent or continuous low-level oxygen therapy is needed to prevent secondary health issues.’
32. Our adviser said the ICB’s rationale of B’s breathing needs at the time of the May 2024 review is in line with the moderate descriptor. They said the ICB had noted an improvement to B’s breathing. He was no longer reliant on oxygen unless he was unwell.
33. We can see the evidence presented supports the ICB’s view. There is no indication he required continuous high flow/level oxygen to maintain his respiratory function for the majority of the day and night. This is the evidence the ICB would have needed to see to give a high weighting.
34. We can see no failing in how the ICB considered this domain. The ICB considered B’s breathing needs in line with the DST guidance.
Mobility domain
35. Miss A disagrees with the way the ICB considered the mobility domain. She says he still had a high level of need in 2024.
36. She says B had multiple falls and his mobility is more problematic. He cannot move around without help. He loses his balance and coordination because of his neurological condition. The falls usually happen when he has no carers in the periods between his mother’s work shifts. When B falls, he cannot save himself, resulting in injuries which are mainly on the head and face. B needs to be in a safe space which would be either be his Panda chair (a specialist seat for children with disabilities), or his high sided, padded, medical grade cot. Losing the care package meant B had to spend more time in his safe space equipment to ensure his safety.
37. The ICB said B had a moderate level of need. He was fully dependant on others for all transfers and could not assist. He could walk using a walker.
38. The relevant part of the DST descriptor for a high level of need is:
‘Unable to move in a way typical for age; cared for in single position, or a limited number of positions (e.g. bed, supportive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, or pain on movement; needs careful positioning and is unable to assist or needs more than one carer to reposition or transfer.’
39. The relevant parts of the DST descriptor for a moderate level of need are:
‘Difficulties in standing or moving even with aids, although some mobility with assistance. or unable to move in a way typical for age; cared for in single position, or a limited number of positions (e.g. bed, supportive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, or pain on movement, but is able to assist’.
40. Our adviser said the moderate weighting describes B’s mobility needs at the time of the assessment. Again, we can see the evidence presented supports this. He was able to take individual steps with encouragement. There was no indication he was unable to move due to the risk of physical harm or pain on movement. This is the evidence the ICB would have needed to see to give a high weighting.
41. We can see no failing in how the ICB considered this domain. The ICB considered B’s mobility needs in line with the DST guidance.
Holistic needs
42. Miss A does not think the ICB took a holistic view of B’s needs and says the decision does not reflect his complex needs.
43. The ICB said B’s health needs had improved and did not present with the high level of care need previously evidenced.
44. Paragraph 148 in the National Framework says that a child is likely to have continuing care needs if assessed as having a severe or priority level of need in at least one domain of care, or a high level of need in three domains of care.
45. Paragraph 149 says the 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.
46. This means that if a child has one domain weighted as severe or priority or three domains weighted as high, they are usually found eligible. However, this is not the only criteria to determine eligibility. Even if the child is not assessed as having this number of high, severe or priority weightings, there are other factors an ICB must consider.
47. Paragraph 7 says there are four key areas of evidence that an ICB should consider in the assessment: • the preferences of the child or young person and their family • a holistic assessment of the needs of the child or young person and their family • reports and risk assessments from a multidisciplinary team or evidence collated during the Education, Health and Care plan assessment • the DST.
48. It is the second bullet point we have focused on and based on the evidence, we cannot say the ICB properly considered this.
49. Our adviser said the February 2024 review reported that B had experienced frequent illnesses and infections, and a decision was made that he would start prophylactic antibiotic therapy to prevent or minimise infections. The nurse assessor also felt that the intensity of B’s conditions meant that he always needed substantial equipment with him, including oxygen cylinders, nasal prongs and saturation monitor. Although there had been improvements in B’s breathing, our adviser said he continued to have complex needs for which he required care.
50. Paragraph 88 says where a child or young person is found not to have a need for continuing care, the ICB should provide a clear written explanation of the rationale for the decision to the child or young person and family.
51. We can see the outcome letter in May 2024 gave no clear explanation of the rationale for the reduction in the domain weightings or why the ICB withdrew the care. The evidence we have seen does not persuade us that the small improvements in B’s breathing and mobility alone were enough to remove his healthcare input. He continued to have multiple and complex needs that required care day and night. As he is growing, his breathing and mobility have improved. But when considered in conjunction with his other health needs, these improvements do not explain why he was no longer eligible for CYPCC.
52. The evidence we have seen suggests the ICB used the basic domain weighting criteria – the requirement for three high weightings - to justify the withdrawal of CYPCC in the outcome letter and it did not consider B’s needs in a holistic manner before making its decision. There is no evidence it thought about what care he needed from carers with a background in health, the effects of his needs on his daily life and that of his family, or the long-term effects of his disability.
53. The ICB has told us it did do a holistic consideration of B’s needs. We acknowledge its comments. We would expect to see a clear explanation of this and, as we have said above, a clear explanation of the decision that B was no longer eligible for CYPCC. The evidence does not show us this.
54. We have found a failing here. Based on the available evidence, we cannot conclude the ICB acted in line with the National Framework when it decided to withdraw B’s care package. The evidence does not show us it took a holistic view of his needs or explained the reasoning behind the decision making. We next consider the impact of this.
Impact
55. Miss A says the family have suffered mentally, physically and financially trying to cope with B’s challenging needs. They paid a carer to help them manage B when the ICB ended the care package in May 2024. Miss A says she had to increase her medication to deal with the effect on her mental health.
56. We have seen evidence that Miss A increased her medication in 2024 and 2025, and that the family organised a carer privately, who has provided 160.5 hours of care from June 2024 onwards to help the family meet his needs.
57. It is important to note that we cannot say whether B should have remained eligible for CYPCC in 2024, only the ICB can decide this. Until there is clear evidence the ICB has done a fair and holistic assessment, there remains the possibility that it should not have withdrawn the care package. Therefore there also remains the possibility that Miss A and the family could have avoided some of the mental, physical and financial impact of the change in his care provision.
58. Miss A says she has lost faith in the ICB. We note that B will likely be in the multidisciplinary health, social and educational system as a lifelong experience. Based on the evidence, we can see how the ICB’s mistakes have caused Miss A distress and anxiety separately from the decision itself and damaged a relationship the family are likely to have to rely on for many years.
What the ICB has done to put things right
59. The ICB has told us it will include a narrative in outcome letters about any change to DST domain weightings, so families are fully informed. It said it would be willing to apologise to the family for any anxiety its decision caused.
60. We are pleased the ICB has taken some learning from this complaint. But we do not think this is enough. The ICB has not acknowledged it got anything wrong in how it decided to withdraw B’s CYPCC funding.