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North East London Integrated Care Board

P-005091 · Statement · Decision date: 24 March 2026 · View NHS North East London ICB scorecard
Continuing healthcare
Complaint (AI summary)
Miss A complained her son was wrongly denied a full children and young person’s continuing care (CYPCC) assessment and the ICB did not consider his complex needs.
Outcome (AI summary)
The complaint was closed. The ICB acted in line with the National Framework for CYPCC when deciding her son was not eligible for funding.

Full decision details

The Complaint

3. Miss A complains that North East London Integrated Care Board (the ICB) found her son, B, did not meet the threshold for a full children and young person’s continuing care (CYPCC) assessment on 29 April 2025. She disagrees with the way the ICB considered several of the domains. She does not think the ICB took a holistic view of her son’s needs and says the decision does not reflect his complex needs.

4. Miss A says the ICB’s decision has had a huge impact on her and her son. She has suffered mentally, physically and financially trying to cope with B’s challenging needs as a single parent. She has lost faith in the ICB and feels isolated.

5. Miss A wants the ICB to acknowledge what it has got wrong and apologise for the impact it has had on her and B. She also wants the ICB to review its decision.

Background

6. CYPCC is a package of additional health support for children and young people under 18 who have complex needs that cannot be met by standard health services. An ICB will decide if the child or young person is eligible by doing an assessment. This can include a pre-assessment to determine if a full assessment is necessary.

7. B is a young child who is severely disabled. He has autism spectrum disorder and gastroesophageal reflux amongst other health conditions.

8. B’s GP referred him to the ICB for a CYPCC assessment in March 2025. The ICB did a pre-assessment in late April and wrote to Miss A a few days later to explain that B did not qualify for a full assessment.

9. In May 2025 Miss A complained to the ICB. The ICB responded in September 2025.

Findings

12. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong in the way the ICB reached its decision.

13. The pre-assessment checklist looks at the child or young person’s needs across ten care domains. Each has weightings, with descriptors, from no needs to high, severe or priority, depending on the domain. The National Framework says a full assessment is more likely where the child has at least one severe or priority need, or three high needs.

14. The ICB said B had moderate needs in two care domains, low in one and no needs in seven. We acknowledge Miss A has concerns in the way the ICB considered six of the domains. We have looked at these below.

Eating and drinking

15. Miss A says her son needs prompting and supervision during mealtime as he could easily choke if left alone. He must be fed to ensure he takes the right amount of food as otherwise he may not eat. The ICB said he had no needs.

16. The pre-assessment checklist says a child has no needs in this domain if they can eat and drink enough on their own, in a way typical for their age.

17. We can see the ICB noted the GP records mentioned gastro-oesophageal reflux on In September 2019, and B was last prescribed Gaviscon medication for this in April 2020.

18. The paediatrician clinic report dated July 2023 state that orange, banana, cucumber or pistachio food can calm B down. It indicated that he could feed himself by using his hands, spoon and fork. He would grab other people’s food if hungry. The reports do not show that there are any issues with oral food intake or feeding.

19. But the evidence indicates B needed ‘some’ supervision at mealtimes - observation and guidance. The pre-assessment checklist describes low needs as a child who needs some extra help, supervision, or encouragement with eating and drinking beyond what is usual for their age. This would indicate his needs aligned more with the low needs descriptor.

20. The National Framework says the approach to borderline levels of need across domains follows a best fit and highest-appropriate-need judgement, rather than mechanically picking one descriptor.

21. Elements of both the ‘no needs’ and ‘low’ descriptors applied to B’s needs. In line with the checklist descriptors, the ICB should have chosen the higher level of need.

22. There is an indication of a failing here in the way the ICB considered the eating and drinking domain.

23. We discuss the impact of this towards the end of this decision.

Mobility

24. Miss A says B cannot stay still. She mostly books a taxi when going out for safety in the local community. The ICB said he had no needs.

25. The pre-assessment checklist says a child has no needs in this domain if their mobility is typical for their age and development.

26. We can see the ICB noted the paediatrician clinic report indicated that B plays and jumps on the trampoline. He can jump up and down, climb on furniture and spin. The report said he would flap his hands and flick his fingers when excited.

27. The NAS website says that many autistic people use repeated movements (like hand flapping or spinning) and/or repeated behaviours (like saying a word or listening to a song on repeat) for sensory stimulation, to keep calm or to express joy. This is an example of one of the core characteristics of autism.

28. We note B likes to go out on the bus and train and cannot see any mention of any physical mobility aids. He does not move with difficulty, require assistance or is unable to move in a way typical for his age. This is what the ICB needed to see for a higher weighting.

29. We think the ICB acted in line with the checklist descriptors and there is no indication of a failing in the way it considered his mobility needs.

Continence or elimination

30. Miss A says B needs support wiping after using the toilet and taking his clothes off. She monitors him when using the toilet as he could easily rub excreta on the wall. He also needs support washing his hands. The ICB said he had no needs.

31. The pre-assessment checklist says a child has no needs in this domain if their continence care is routine and typical of age.

32. We can see the paediatrician clinic report states that B is nappy trained. He may sometimes randomly wet himself. Miss A reported that he sometimes urinates on himself without any obvious reason. She also indicated he can physically use a toilet by himself.

33. The NAS website says that common toileting difficulties for autistic children can include communicating the need to use the toilet, and sensory and environmental challenges.

34. We cannot see B was usually incontinent of urine or that his continence care is problematic. This is what the ICB would have needed to see to give a higher weighting.

35. We think the ICB acted in line with the checklist descriptors and there is no indication of a failing in the way it considered his continence or elimination needs.

Communication

36. Miss A says B is pre-verbal and mostly repeats words he has heard. He does not communicate his needs with words and needs familiar adult gestures to work out what he needs. He has few friends to play with for social interaction due to his speech and communication difficulties. The ICB said he had a moderate level of need.

37. The pre-assessment checklist says a child has a moderate level of need in this domain if their emotions are hard to understand, especially for unfamiliar people, and they need regular support. Familiar carers can usually interpret their needs. The child always needs support to communicate (for example, using signs, aids or choice boards). Their ability to express basic needs can vary depending on their mood.

38. We note the ICB said B has features of autism and ASD. He has been known to local speech and language therapy (SALT) service since April 2022.

39. We can see the SALT report in the ICB file indicates B presents with difficulties with his attention and listening skills, play, social interaction and his understanding and use of language, associated with his diagnosis of autism. The report also indicates that he requires ‘Intensive Interaction’ sessions (a person-centred communication approach) three to five times a day for short periods.

40. We cannot see that even with frequent or significant support from family/carers and professionals, that B was rarely able to communicate basic needs, requirements or ideas. This is what the ICB would have needed to see for a higher weighting. He likes numbers, can say ABC and likes colours and shapes.

41. We think the ICB acted in line with the checklist descriptors and there is no indication of a failing in the way it considered his communication needs.

Psychological and emotional needs

42. Miss A says B cannot regulate his emotions when he does not have his way and this impulse control makes him socially isolated. She must take him to activities and events that involve other children with familiar and same diagnosis to cope with social stigma or situations. The ICB said he had a low level of need.

43. The pre-assessment checklist says a child has low needs in this domain if they have periods of emotional distress (such as mild anxiety or low mood) that are typical for their age, and these usually settle with reassurance or prompts from others.

44. We can see the paediatrician clinic report states B loves cuddles and kisses, and he gives cuddles and kisses to Miss A. It indicates he knows when she is angry as he will come to her, and he will call ‘mummy’ and give her a cuddle. He likes to watch nursery rhymes on YouTube, and he likes to copy the nursery rhyme. He loves to play with water but does not play with other children.

45. We cannot see B has risk of self-harm, evidence of low moods, depression, anxiety or periods of distress which need specialist support and intervention or a limited response to prompts to remain within existing infrastructure. This is what the ICB would have needed to see to give a higher weighting.

46. We think the ICB acted in line with the checklist descriptors and there is no indication of a failing in the way it considered his psychological and emotional needs.

Challenging behaviour

47. Miss A says B has the habit of hitting, spitting, screaming and throwing things in the house when she tells him off. The ICB said he had a moderate level of need.

48. The pre-assessment checklist says a child has a moderate level of need in this domain if they occasionally show challenging behaviour that is more frequent, intense, or unusual than expected for their age, and it negatively affects their daily life and family.

49. We can see the paediatrician report indicates that if B is not getting his own way, he can scream, yell and throw things. But the report also indicates that normally the phone and iPad can calm him down. He likes jumping up and down, climbing up on the furniture and spinning.

50. We cannot see B has regular, frequent or intense challenging behaviours such as aggression, destruction, self-injury or other behaviours, which have a profoundly negative impact on his quality of life or threaten his immediate safety. There is no indication he needs specialist health intervention for his behaviours. This is what the ICB would have needed to see to give a higher weighting.

51. We think the ICB acted in line with the checklist descriptors and there is no indication of a failing in the way it considered his behaviour needs.

Holistic view

52. 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.

53. We do not underestimate her concerns. The standard pre-assessment checklist only requires the ICB to consider the domains, so we would not expect to see a consideration of holistic needs. If the assessment had progressed to a full assessment, including completion of a decision support tool (DST), then the ICB would have needed to do a holistic consideration in line with the National Framework.

54. But we can see the evidence indicates B’s needs as set out on the checklist was below the threshold. The ICB considered all relevant domains within the pre-assessment and reports from relevant professionals involved in his care (including his GP, Paediatrician report, SALT and Miss A’s views).

55. We recognise the ICB did not properly consider one of the domains (eating and drinking). The evidence about B’s needs in this domain aligns more closely with low needs, rather than no needs. We have thought about whether this change is enough to suggest that, overall, B’s needs should have been above the threshold to warrant a full assessment. We do not think they were.

56. The evidence indicates the change would only have increased his needs to one higher domain weighting for one domain. And there was no indication the increased needs significantly changed the care he needed to keep him safe. He still had no care domains weighted as high, severe or priority. There were no rapid or major changes.

Conclusion

57. Our decision does not take away from the account Miss A has given us, or the challenges B faced. We appreciate he is reliant on good care he receives at the home. It appears the ICB’s overall view was in line with the information it had when it completed the pre-assessment checklist. We consider its process was fair, consistent and transparent.

Our Decision

1. We have carefully considered Miss B’s complaint about how the ICB looked at the children and young people’s continuing healthcare (CYPCC) referral for her son, B. We have seen no indication that anything went seriously wrong when it made its decision.

2. We know Miss feels strongly that her son should have been eligible for CYPCC funding. We have reviewed all the relevant evidence, and we are satisfied the ICB acted in line with the National Framework for CYPCC.

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