North East and North Cumbria Integrated Care Board

3. Mr C complains about North East and North Cumbria ICB’s decision that his son, S, was not able to have his carers with him while he was an inpatient in hospital from 14 February 2024. He complains the ICB stopped funding for the carers whilst S was in hospital, which threatened continuity of care upon his discharge. He states the Trust had insufficient staff to support S’ needs, and the ICB should have allowed the carers to attend the Trust.

4. Mr C states this has caused anguish, anxiety, and uncertainty. He states they have lost trust in the NHS.

5. Mr C is seeking service improvements to recommend the ICB changes its practices in relation to paying carers to attend hospital. He is also seeking financial compensation.

6. Mr C’s son, S, is a child who has severe cerebral palsy and requires one to one care 24 hours per day.

7. S receives NHS continuing healthcare (CHC) funding. This is NHS funding provided to cover the health and social care needs of people with complex health needs. His package of care is provided via a personal health budget (PHB). A PHB is not additional money to CHC funding. It is a way of spending money differently so that a patient can get the care they need. A PHB allows a patient to manage their healthcare and support such as treatments, equipment, and personal care, in a way that suits them.

8. S attended the Trust for two weeks from 14 February 2024, for scoliosis surgery.

ICB did not support carers in hospital

11. 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.

12. Mr C complains the ICB did not allow his son’s carers to go into hospital while he was an inpatient. He states this caused a lot of anxiety and distress as there was insufficient staffing at the hospital to support his son’s needs.

13. The ICB said it believes the hospital staff were adequately trained to provide the level of care S required.

14. The ICB has stated there is no ICB policy which specifically states paid care staff cannot be used in an acute hospital setting. The ICB made the decision not to support S’ care staff working in the acute setting and has outlined the reasons for this decision. The ICB set out the health tasks undertaken on the ward are under the direction of the nurse in charge, and the nurse allocated to look after the child is accountable and responsible for the care they receive. The ICB said the Trust requires an honourary contract (an agreement for individuals to work within the NHS without receiving a salary) to ensure the staff have a current Disclosure Barring Service (DBS), have had the appropriate training in the delegated health tasks, and are capable and safe to undertake those tasks.

15. The Trust did not request an honourary contract from the ICB. If the Trust had done so, we would expect the ICB to have actioned the honourary contract and support the carers in providing care in the acute setting. As the Trust did not request an honourary contract, the ICB were not required to support S’ carers in the hospital.

16. We note Mr C states there was insufficient staff on the ward to provide his son with the support he required. Any concerns about care whilst at the Trust would be the Trust’s responsibility and any complaints about this would need to be directed to the Trust.

17. We have therefore not identified any indications of failings on behalf of the ICB in its decision not to support care staff attending hospital to support S.

ICB stopped funding

18. Mr C complains his son’s carers were not paid whilst he was in hospital, and this threatened his continuity of care upon discharge.

19. The ICB said the funding remained in place for his son’s Personal Assistant (PA) support team to ensure continuity of care on his discharge from hospital.

20. Guidance of direct payments for healthcare: Understanding the regulations, states

‘125. There may be occasions when a person receiving care and support via a direct payment requires a stay in hospital. However, this should not necessarily mean that the direct payment must be suspended while the individual is in hospital.

… Suspending or even terminating the payment could result in the person having to break the employment contract with a trusted personal assistant, causing distress and a lack of continuity of care when discharged from hospital.’

21. The ICB sets out payments continued but Mr C states this is not the case. We therefore requested further information from the ICB to confirm whether or not payments continued.

22. The ICB provided us with screenshots demonstrating that a payment was made on 2 February 2024 which covered the costs for carers until 29 February 2024. The next payment was made on 1 March 2024 and there were no gaps in payments being provided.

23. The guidance sets out it is good practice for the direct payment to continue whilst the recipient is in hospital. We can see this happened, and we were pleased to note best practice was followed by the ICB in this case.

24. We have seen evidence to show that the ICB did not stop funding whilst S was an inpatient for his surgery. We have therefore not identified any indications of failings in relation to this point.

25. We know this has been a difficult and distressing experience for Mr C and his family. We thank them for bringing this complaint to our attention.

1. We have carefully considered Mr C’s complaint about North East and North Cumbria ICB (the ICB). Having completed our consideration of this complaint, we have seen no indication that anything went seriously wrong.

2. We understand this was a stressful and distressing experience for Mr C’s family, and how important it is to get the appropriate support and care needed.