13. CCC is for children who have very complex needs that existing general or specialist health services cannot meet. ICBs decide whether children are eligible for CCC funding. The ICB must follow the National Framework when making a decision. To help it to do this, an ICB should look at relevant clinical and other evidence. It should consider the level of need for a child in a number of domains. To help with this, the National Framework includes a decision support tool (DST) which describes these levels. ICBs also need to consider the holistic needs of the child and their family.
Eating and drinking
14. Miss S says the ICB ignored clinical evidence such as U’s speech and language therapy (SALT) assessment and that his social worker thought his level of need in the eating and drinking domain was high. She says the speech and language therapist and a dietician said U has oral dysphasia (swallowing problems), that he has been known to the SALT service all his life and has a known choking problem.
15. The ICB said U’s level of eating and drinking need was moderate. It said U can eat foods such as crisps and Alpen bars which are normally categorised as high risk, and fits the moderate description.
16. The descriptor for moderate is:
‘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.’
17. The descriptor for high is:
‘dysphagia, 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)’.
18. We asked our adviser about this. They noted the DST says U does not chew his foods and will overfill his mouth with food and fluids. He needs constant, close supervision when eating and drinking because of this, because he takes food from others and will push it into his mouth, and because he will drink too quickly. He also needs close supervision because he becomes tired easily and will fall asleep, even when eating and drinking, causing his head to fall forward and increase the risk of choking. Our adviser said this evidence aligns more with the descriptor for high needs in this domain.
19. The DST also says U needs a soft diet, has to be prompted and reminded to drink, is a very ‘messy eater’ because he eats with his mouth open, and needs personal care before and after his meals.
20. Based on the domain descriptors, the evidence in U’s records and Miss S’s account, we do not think the ICB’s weighting of moderate is robust. There is a sign the ICB got things wrong here.
Continence
21. Miss S says the ICB had previously decided U’s needs in the continence domain were high in 2020. She says his needs should have remained as high, as he was reaching puberty and getting bigger and stronger. She says he cannot use the toilet himself and needs trained carers to help him, in line with the domain descriptor for high.
22. The ICB said U’s level of need in this domain was moderate. It said he did not need additional trained support. It suggested the issues Miss S has raised were covered in the challenging behaviour domain, which it changed to a high level of need on review.
23. The descriptor for moderate is:
‘Has a stoma requiring routine attention, or doubly incontinent but care is routine; or self-catheterisation; or difficulties in toileting due to constipation, or irritable bowel syndrome; requires encouragement and support.’
24. The descriptor for high is:
‘Continence care is problematic and requires timely intervention by a skilled practitioner or trained carer.’
25. The records show U is incontinent of bladder and bowel and needs support and help to manage this. He needs two carers to change him and carry out personal care. His pads leak, which requires a shower and a complete change of clothing and bedding.. The records show there had been difficulty in finding continence products that met his needs. U also needs a specialist changing table, for which his mother is trying to find funding.
26. We can see from the records that U needs changing at least three times a day and at night. This causes increased laundry loads. The records also say he has a tendency to put his hands into his pads and the carers need to be vigilant in making sure his hands and fingernails are clean. The records do not suggest that he experiences frequent urinary tract infections or episodes of constipation.
27. We asked our adviser about this. She said U’s continence needs fall mainly into the domain descriptor of moderate. But U does need timely and skilled intervention to make sure he remains comfortable and dignified and does not cross-contaminate and spread urinary and faecal matter with his hands.
28. The Department of Health recommends that, if an individual’s needs are present in a way that crosses over two levels of domain scoring, the higher level of score should be recorded.
29. When we weigh up the evidence, U’s needs appear to span the moderate and high descriptors. In light of the Department of Health recommendation, it appears the ICB’s weighting of moderate is not fully supported by the evidence. There is a sign of a failing here.
The family’s holistic needs
30. Miss S says the ICB did not complete a holistic assessment of all of U’s needs as the CCC National Framework says it should. She says it did not consider her younger son’s anxiety and other mental health problems and how U’s needs interact with this. The ICB says U’s condition regarding his seizures is improving and he receives social care funding for his needs.
31. We asked our adviser about this. They said the evidence supports that U has highly complex care needs which are intense, needing close supervision and monitoring for all areas of his day-to-day living and activities.
32. They said U’s condition is unpredictable in that he has severe epilepsy and requires rescue medication (Buccal midazolam) on a frequent basis for long seizures. U also has a condition called sodium channel mutation which causes Sodium depletion in the body. This can cause cardiac arrhythmias and possible sudden death due to cardiac arrest.
33. Our adviser says having both conditions makes U’s needs complex, unstable and unpredictable.
34. We cannot see from the assessment documentation that the ICB properly considered U’s holistic needs. There is a sign of a failing here.
The impact
36. Because the ICB may have got things wrong in how it considered the two domains and how it did a holistic assessment of U’s needs, it may not have made the right eligibility decision.
What we have agreed with the ICB
35. We asked the ICB if it would look again at U’s CCC package and discuss this with Miss S. We spoke to senior colleagues in its CCC team who said they would be prepared to hold a further meeting with Miss S about this.
36. We let Miss S know about this. We said this did not mean the ICB would change its eligibility decision. We also said she would have the right to bring her complaint back to us if she is unsatisfied with the outcomes of her meeting with the ICB. She considered these points and agreed to the suggested resolution.
37. We think this will put things right in line with our Principles of Good Complaint Handling. The ICB will have the chance to look again at the evidence to decide if it might change its decision about U’s eligibility.
38. We can see this complaint has been upsetting for Miss S. We hope this resolution will help address this for her and her family.