13. ICBs decide whether children are eligible for CCC funding. The ICB must follow the National Framework when making a decision. The NHS is not expected to fund the total care package if the outcome of the assessment is positive. Its responsibility is to fund care for those needs that cannot be met by universal or mainstream health services. The total care package requires an educational and social care part.
14. To help it decide, an ICB should look at relevant clinical and other evidence. It should consider the child’s level of need in a number of domains. To help with this, the National Framework includes a DST that provides descriptors for these levels. The ICB should also consider the holistic needs of the child and their family.
The domains
15. Mrs I disagrees with how the ICB scored the eating and drinking, drugs therapies and medications, psychological and emotional needs and challenging behaviour domains.
Eating and drinking
16. Mrs I disagrees with ICB’s scoring of this domain. She says it should be high but the ICB scored it as low.
17. Mrs I says K’s eating and drinking is challenging because of his diabetes and because she has to support him to cut up his food. She says his meals and fluid intake need monitoring to maintain his blood sugars. She says he needs skilled intervention (help) in this area and had been scored by the ICB before as high.
18. The ICB noted K can eat and drink independently and was gaining weight in the period under consideration. It said he has dietary support and an individual health plan for his diabetes. It said his needs fit with the low descriptor.
19. The National Framework describes a high level of need as:
‘Faltering growth, despite following specialised feeding plan by a speech and language therapist and/or dietician to manage nutritional status, or dysphagia [a language disorder affecting speech and comprehension], requiring a specialised management plan developed by the speech and language therapist and multi-disciplinary team, with additional skilled intervention to ensure adequate nutrition or hydration and to minimise the risk of choking, aspiration and to maintain a clear airway (for example through suction); or problems with intake of food and drink (which could include vomiting), requiring skilled intervention to manage nutritional status; weaning from tube feeding dependency and / recognised eating disorder, with self-imposed dietary regime or self-neglect, for example, anxiety and/or depression leading to intake problems placing the child/young person at risk and needing skilled intervention; or problems relating to a feeding device (e.g. nasogastric tube) which require a risk-assessment and management plan undertaken by a speech and language therapist and multidisciplinary team and requiring regular review and reassessment. Despite the plan, there remains a risk of choking and/or aspiration’.
20. It describes a moderate level of need as:
‘Needs feeding to ensure safe and adequate intake of food; feeding (including liquidised feed) is lengthy; specialised feeding plan developed by speech and language therapist; or unable to take sufficient food and drink by mouth, with most nutritional requirements taken by artificial means, for example, via a non- problematic tube feeding device, including nasogastric tubes.’
21. It describes a low level of need as:
‘Some assistance required above what is typical for their age; or needs supervision, prompting and encouragement with food and drinks above the typical requirement for their age; or needs support and advice about diet because the underlying condition gives greater chance of non-compliance, including limited understanding of the consequences of food or drink intake; or needs feeding when this is not typical for age, but is not time consuming or not unsafe if general guidance is adhered to.’
22. We asked our adviser about this. We can see from the records that K needs help cutting up his food, but manages it independently once that has been done for him. He has type 1 diabetes which is managed by insulin and continuous monitoring of his blood glucose levels. We can see his individual healthcare plan for diabetes says he did not need to have a specific diet. Our adviser said he needed help to interpret readings on his diabetic monitor and to calculate the amount of carbohydrates he was eating, but there were no requirements for skilled interventions to manage his nutritional status.
23. We can also see from the records that K had gained weight during the period under review. The ICB decided his needs were stable. Our adviser said the evidence matched the low descriptor because he needs support and advice about diet.
24. When we weigh up the evidence, including Mrs I’s account of K’s needs, we can see he was not able to calculate his dietary input and his diabetes meant this needed continual monitoring. For the ICB to have decided on a high score we would need to see evidence of things like dysphasia requiring a specialised management plan, problems with a feeding device or skilled intervention to maintain K’s nutritional status.
25. For completeness, we also looked to see if there was any evidence that might support a moderate need, such as K being unable to take enough food and drink by mouth, or needing feeding to make sure of a safe and acceptable intake of food. We could see no sign of these needs.
26. It seems the ICB acted in line with the National Framework and we have not seen signs of a failing in how it scored this domain.
Drug therapies and medications
27. Mrs I disagrees with ICB’s decision of this domain. She says it should be severe but the ICB scored it as high. She says K’s drug regime is difficult to manage. She says he is often ill because of his low immune system and because he has brittle bones.
28. The ICB says K regularly needs the help of a registered nurse for his medication because he has an unstable condition. It noted it had scored his needs in this domain as moderate before.
29. The National Framework gives this descriptor for a severe need:
‘Has a medicine regime that requires daily management by a registered nurse and reference to a medical practitioner to ensure effective symptom management associated with a rapidly changing/deteriorating condition; or extensive sleep deprivation caused by severe intractable pain requiring essential pain medication management – occurring every one to two hours or requires continuous intravenous medication, which if stopped would be life threatening (e.g. epoprostenol infusion).’
30. It gives the following descriptor for high:
‘Drug regime requires management by a registered nurse at least weekly, due to a fluctuating and/or unstable condition; or sleep deprivation caused by severe distress due to pain requiring medication management – occurring four times a night (and four times a week).
or requires monitoring and intervention for autonomic storming episodes.’
31. We asked our adviser about this and they said the evidence matches with a high level of need as decided on by the ICB. They said the records show K is compliant with his medicine. Mrs I monitors his blood sugar level, insulin and immunoglobulin (which measures how well your immune system is functioning) and K needs the support of a specialist nurse on at least a weekly basis. There are fluctuations (changes) in his needs, which require changes to be made to his prescriptions by the relevant professionals.
32. For the ICB to have decided on a severe need, there would need to be evidence that K’s drug and medication regime needed daily management by a registered nurse, that he had intractable pain (severe and constant pain that is not curable) requiring essential medication every one to two hours or continuous intravenous medication (medication given directly into the veins). We have not seen evidence of this in his records.
33. We appreciate K’s medication needs are high and this is a cause for concern for his family. When we weigh up the evidence, it seems the ICB acted in line with the National Framework and we have not seen signs of a failing in how it scored this domain.
Psychological and emotional needs
34. Mrs I disagrees with ICB’s scoring of this domain. She says it should be high but the ICB weighted it as low. She says K’s behaviour changed after his hair loss. He attended hospital for one-to-one support with a psychologist for six months. She says he kicks and punches her when at home.
35. The ICB says he started hitting himself after getting his diagnosis of diabetes mellitus. It said his school was supporting him with managing his emotions and uncertainty.
36. The National Framework describes a high need in this domain as:
‘Rapidly fluctuating moods of depression, necessitating specialist support and intervention, which have a severe impact on the child/young person’s health and well-being to such an extent that the individual cannot engage with daily activities such as eating, drinking, sleeping or which place the individual or others at risk; or acute and/or prolonged presentation of emotional/psychological deregulation, poor impulse control placing the young person or others at serious risk, and/or symptoms of serious mental illness that places the individual or others at risk; this will include high-risk, self-harm.’
37. It describes a moderate as:
‘Requires prompts or significant support to remain within existing infrastructure; periods of variable attendance in school/college; noticeably fluctuating levels of concentration. Self-care is notably lacking (and falls outside of cultural/peer group norms and trends), which may demand prolonged intervention from additional key staff; self-harm, but not generally high risk; or evidence of low moods, depression, anxiety or periods of distress; reduced social functioning and increasingly solitary, with a marked withdrawal from social situations; limited response to prompts to remain within existing infrastructure (marked deterioration in attendance/attainment / deterioration in self-care outside of cultural/peer group norms and trends).’
38. It describes a low need as:
‘Periods of emotional distress (anxiety, mildly lowered mood) not dissimilar to those typical of age and peer group, which subside and are self-regulated by the child/young person, with prompts/ reassurance from peers, family members, carers and/or staff within the workforce.’
39. We asked our adviser about this. K’s reassessment form from February 2023 says Mrs I had reported his mood had changed after his hair loss. It says he had had input from a psychologist for six months in 2021 too. We can see K kicked and punched out at home when he was distressed and he became more socially isolated after a period of home schooling. We can see a clinical psychologist said K’s confidence had been affected by his hair loss and his anxiety levels could impact on his sleep.
40. Our adviser said this evidence matches the description for low, as K had periods of emotional distress like anxiety that pass with prompts or reassurance from family members, carers or medical staff. They said there was no evidence to support a higher score, like marked withdrawal from social situations or rapidly fluctuating moods which had a severe impact.
41. We can see K’s anxiety, mood change and behaviour were distressing for Mrs I and the family and upsetting for him. When we weigh up the evidence, we have not seen that his needs reflected a higher score (either moderate or high). It seems the ICB acted in line with the National Framework and we have not seen signs of a failing with its decision.
Challenging behaviour
42. Mrs I says the ICB said K had no additional needs in this domain but his needs were high. She says the ICB played down the extent of K’s needs. The ICB says Mrs I agreed with its scoring at the meeting because it had covered this area in the psychological and emotional needs domain.
43. The description for high for this domain is:
‘Regular challenging behaviours such as aggression (e.g. hitting, kicking, biting, hair-pulling), destruction (e.g. ripping clothes, breaking windows, throwing objects), self-injury (e.g. head banging, self-biting, skin picking), or other behaviours (e.g. running away, eating inedible objects), despite specialist health intervention and which have a negative impact on the child and their family / everyday life.’
44. The description for moderate is:
‘Occasional challenging behaviours which are more frequent, more intense or more unusual than those expected for age or stage of development, which are having a negative impact on the child and their family / everyday life.’
45. The description for low is:
‘Some incidents of behaviour which challenge parents/carers/staff but which do not exceed expected behaviours for age or stage of development and which can be managed within mainstream services (e.g. early years support, health visiting, school).’
46. The description for no additional needs is:
‘No incidents of behaviour which challenge parents/carers/staff.’
47. Our adviser said there was no evidence to support a higher score than no additional needs. They said the records said K had no needs which had not been recorded and considered under the psychological and emotional needs domain and, the ICB had scored that in line with the evidence.
48. We understand Mrs I’s concerns about her son’s behaviour. We can see how his actions do seem to link to this domain. But when we weigh the evidence, we can see these had already been considered under another domain. The National Framework says ICBs should not duplicate needs in two separate domains, so it did not need to consider these separately here. K’s needs could be met by health services, so there was no need for the ICB to consider a wider plan).
49. We have not seen that K’s needs reflected a higher scoring and it seems the ICB acted in line with the National Framework. We have not seen signs of a failing in how it made its decision for this domain.
The ICB did not complete a holistic assessment of the totality of K’s needs and family circumstances
50. Mrs I says the ICB did not consider her son’s needs in the holistic way it should. She says it downplayed how serious K’s conditions were and how they interact and it did not take proper or full account of the views of the professionals who work with him. She says his condition is deteriorating and his day and night-time needs are increasing.
51. Mrs I also says the ICB did not properly consider either the views of her family or how K’s needs impact on them. She thinks his needs do not neatly fit into the descriptions in the National Framework, but the ICB ignored this.
52. The ICB said it had considered all the relevant evidence and it was clear from the assessment that the family’s views had been considered and recorded on all the domains. It confirmed the family provided no new information with the appeal, so it did not have a reason to change its decision.
53. The National Framework explains how an ICB should interpret the level of a child’s needs using the domains. It explains when the domains alone would show that the child has continuing care needs (when they are assessed as having a severe or priority level of need in at least one care domain or a high level of need in three care domains).
54. None of these applied to K. He had two high scores, in the mobility and drug therapies and medication domains. The National Framework then explains the other factors an ICB should look at, as well as the domain scores. It should consider the preferences of the child or their family, the holistic needs of the child and their family and reports and risk assessments from a multidisciplinary team (made up of professionals from different areas) or evidence gathered during the education, health and care plan assessment.
55. We asked our adviser about this. We can see from the records that the ICB considered all the relevant evidence and completed a holistic assessment of K’s needs, including the views and needs of his family.
56. We can see the family’s views are represented throughout the DST, including across the domains. It includes references to the impact of K’s needs on the family where it is relevant. For example, it says, ‘Mother reported that she struggles herself with her mental health and find it difficult at times to support K’. It also discusses the impact of his sleep patterns on the rest of his family. Our adviser says there is no evidence that the ICB did not consider the relevant information when making and reviewing its eligibility decision for K.
57. When we look at the evidence, it seems the ICB’s approach and explanation of its decisions are supported by the available clinical evidence. We cannot say it got something wrong because it acted in line with the National Framework.
The ICB went ahead with the DST when it should not have done
58. Mrs I says the ICB only gave her a week in June 2023 to gather evidence for the DST. She says this was not enough time to organise things properly, especially as K was in hospital and this was a stressful time for her family. The ICB did give her another three weeks, but she believes this was not enough and meant its decision was not as robust as it should have been. She thinks this also affected its reassessment of its decision.
59. We asked our adviser about this. The records show the ICB completed the DST in line with the National Framework. It considered the preferences of K and his family, it did a holistic assessment of his needs and the family’s needs, it took reports and risk assessments from a multidisciplinary team and the DST when making its decision. Our adviser said its reassessment in July 2023 was completely by a nurse and a social worker and includes reports and risk assessments from other professionals and Mrs I. It completed this reassessment in line with information and descriptors from the National Framework.
60. We understand Mrs I’s concerns that the ICB asked her to organise evidence while K was in hospital. This was clearly a very upsetting time for her and the ICB could arguably have been more understanding.
61. But, we can see it gave her another three weeks to submit evidence and it did reconsider its decision. ICBs regularly have to complete eligibility assessments when people are very unwell and we cannot say they should always postpone these. The National Framework does not say organisations should wait, but that decisions should be made quickly. It says the ICB should communicate with the family and the ICB did this and agreed to give Mrs I more time to provide it with evidence.
62. We understand why Mrs I is so concerned about this, but we cannot say the ICB did not act in line with the National Framework.
63. We can see the ICB’s decision about K’s care needs caused Mrs I real concern and upset. We understand how important this issue is to her and wish her and her family well for the future. We have not seen signs that the ICB got anything wrong in how it made its eligibility decision and dealt with her appeal. We hope our decision reassures her and her family that the ICB considered the decision as it should have.