Frimley Integrated Care Board

4. Mr N complains about the ICB’s decision to not reimburse him and Ms O for expenses when taking Ms O’s son, Mr O, on holiday between 5 June and 30 September 2018, after his residential placement broke down.

5. Mr N says there has been a significant financial impact. He says he was unable to continue working and they relied on credit cards to meet Mr O’s needs. He said he was also unable to pay his pension, insurance and union contributions. Based on the information given to the ICB, it calculated the total claim as £64,000.

6. Mr N would like the expenses to be reimbursed.

7. Mr O was in his forties at the time and he has epilepsy, learning disabilities and is autistic. He has the cognitive age of a three- to eight-year-old. He lives in a residential care home.

8. It was planned for Mr O to go on a supported holiday from 4 to 8 June with his care staff, arranged by a community learning disabilities team (the LD team). The plan was for him to then go on holiday with his family from 8 to 18 June.

9. On 14 May 2018, the LD team received an email from Mr O’s care provider to say his placement would be terminated on 20 June 2018. Formal notice was given on 18 May.

10. On 17 May Mr O’s family were asked by the care provider to pay the remainder of the holiday fee, which they did. On 20 May, Mr O’s family were given a letter saying Mr O’s placement was ending.

11. There was a meeting with the care provider on 24 May. The reasons given for the placement being terminated were staff not wanting to work with Mr O and the family contacting health professionals without permission.

12. Mr N believes the placement was terminated because they complained to the Care Quality Commission (CQC). The ICB later told Mr N’s MP that the placement was terminated due to Mr N’s behaviour.

13. The care provider was happy for Mr O’s holiday to go ahead as planned. Mr O’s family told it they would take Mr O on holiday from 4 to 18 June because they did not want staff who did not want to work with him, to take him on holiday. They also said if they had known about the placement giving notice between 14 and 20 May, they could have decided to stay at home and work with the placement, and not pay for the holiday.

14. On 1 June 2018, Mr O’s family requested the names on the booking to be changed to allow them to take Mr O on holiday. This included the travel, accommodation and insurance. This was available to Mr O and his family to use as planned.

15. Mr N said when they changed the name on the accommodation booking, they were advised it was not suitable for a disabled person. He booked an alternative adapted caravan. This meant two different accommodations were booked.

16. Mr O stayed at the first accommodation from 4 June to 2 August 2018. Mr O and his family then went to another holiday location.

17. On 15 June 2018, Ms O and Mr N wrote to their local MP about Mr O’s care. Their email states, ‘we are now funding [Mr O’s] care ourselves’ and ‘[the ICB] has said they will not fund any holidays or carers from the 25 June to the 29 June, until we go back on the mainland’.

18. On 9 July 2018, Mr O’s social worker wrote to Ms O and Mr N about the difficulties of finding a placement for Mr O when he is not in the area. The social worker said Mr O should come home.

19. Mr O’s social worker emailed Mr N on 14 August 2018 about the cost of rent at a holiday camp. Mr N said he would provide the information. He repeated the timeline of events about the placement notice and paying for the holiday.

20. On 27 August 2018, the local authority (LA) told Mr N that the ICB was responsible for NHS continuing healthcare (CHC) funding and reimbursement.

21. The next day Mr N complained to his MP again about the lack of financial support from the ICB. He said they were £14,000 in debt from meeting Mr O’s care needs.

22. On 30 August 2018, a solicitor for the care provider wrote to Mr O’s family to advise no money would be reimbursed for travel, accommodation or insurance as the booking was available for the family to use instead of staff. It said the care provider had used the accommodation before and it was suitable for Mr O’s needs.

23. On 14 September 2018, the ICB replied to Mr N’s MP to say Mr O’s placement had broken down due to Mr N’s behaviour. It said an alternative placement was found and declined by Mr O’s family due to concerns with staircases in the new placement, although care planning had included looking at the risk of this.

24. The ICB said Mr O’s care for his two-week holiday was funded as planned. It said this was extended to make sure Mr O had care for the extended holiday stay, but this did not include all the costs Mr N and Ms O wanted to be reimbursed. For example, for Mr N’s unpaid leave and pension, insurance and union fees.

25. On 1 October 2018, Mr O moved to a new residential placement.

26. On 30 December 2021, the ICB wrote to Ms O and Mr N to explain decisions with a person’s care and support and/or accommodation should be made with the ICB’s CHC team before making financial commitments. It said it may not be liable for costs if it is not made aware of them. It also explained it was more difficult to find a placement when Mr O was on holiday, as he could not be assessed as easily by new placement staff. It declined to reimburse the holiday costs as these had not been agreed.

27. Mr N says 30 December 2021 is the date when he first knew he had a reason to complain about these events.

28. The LA wrote to Mr N on 15 March 2022 to explain that although the placement had not given notice until 30 June, the placement would have extended the notice period if no other placement been found. It said it was aware Ms O and Mr N did not think it was safe for Mr O to return to the placement, but the LA had no safeguarding concerns and did not agree. The LA did not agree the holiday was an agreed ‘respite care’ placement or that it was necessary. It said the LD team asked for them to return with Mr O to the placement.

29. The LA said a placement had been available from 17 September, but Mr N told Mr O’s social worker they were going on holiday and Mr O would move into the new placement on 1 October.

32. The law says a person needs to make their complaint to us within a year of becoming aware of the problem. We cannot investigate complaints brought to us after one year, unless we consider there is a good reason to.

33. Mr N told us that 30 December 2021 is when he knew there was a problem, because the ICB wrote to him then to explain the reason why it would not reimburse him.

34. After carefully considering the evidence, we found Mr N was aware of the problem on 15 June 2018. At this time he complained to his MP about the ICB’s lack of financial support. He told his MP that, ‘we are now funding [Mr O’s] care ourselves’ and ‘[the ICB] has said they will not fund any holidays or carers from the 25 June to the 29 June’. This shows Ms O and Mr N knew that the ICB would not fund Mr O’s care on 15 June 2018.

35. Based on this, Mr N needed to complain to us by 15 June 2019 to meet our time limit. He complained to us on 25 February 2023, around three years and six months outside of our time limit.

36. We discussed this with Mr N to understand why he could not complain sooner. We also considered the time the ICB took to reply to Mr N’s complaint.

37. Mr N was able to give us the dates of many emails to the ICB, the LD team, the LA, a solicitor, the CQC and us. There were several gaps of around three to six months between some of these dates that Mr N could not explain.

38. On 27 August 2018 and 22 June 2020, Mr N was told by the LA and LD team that it was not the funding authority for Mr O’s care and directed him to the ICB. Mr N says he was wrongly told the LA was the funding authority, but there we have seen no evidence of this.

39. Mr N told us he continued to email the LD team and LA about his concerns after being told the ICB was who he needed to contact. This caused unnecessary and avoidable delays to bringing the complaint to us.

40. In June 2022, Mr N got a final complaint response from the ICB. It wrongly advised him to complain to the Patient Advice and Liaison Service (PALS). But, Mr N had spoken to us before about his complaint, so we think he could have come to us at this time.

41. Mr N continued to email the ICB and LD team and did not contact PALS or us.

42. On 29 July the ICB acknowledged Mr N’s questions on 29 July and had a phone meeting with him on 17 August. It sent another final response on 15 September to summarise the call and confirm it stood by its decision as communicated on 30 December 2021, 6 June 2022 and 13 August 2022.

43. Mr N should have brought his complaint to us after the ICB’s response, but he contacted the LA on 15 February 2023. This caused another five-month gap that Mr N has been unable to explain.

44. The LA told Mr N on 23 February that it had already advised him that the ICB was responsible for CHC payments. It also said, ‘in many instances the same queries that had already been raised and responded to were again being raised in different sequences or formats causing unnecessary delays’.

45. Mr N delayed the complaint by directing it to the wrong organisation, by going back to the ICB despite having received final responses that he could have brought to us sooner and we saw several gaps of three to six months at a time when he did not follow up the complaint.

46. We have decided Mr N’s complaint has not been brought to us within our time limit and there is no reason to put the time limit to one side. We will not consider his complaint any further.

47. We appreciate the events surrounding the complaint were very difficult for Mr N, Ms O and Mr O and we understand Mr N. We realise this is not the outcome Mr N was hoping for and we would like to thank him for taking the time to tell us about his complaint.

1. We have carefully considered Mr N’s complaint about Frimley Integrated Care Board (the ICB).

2. The complaint falls outside of our time limit and we have decided there is no good reason to put this to one side and investigate further.

3. We recognise Mr N and his partner, Mrs O, are in debt because of the decisions they made about Mr O’s care between 5 June and 30 September 2018. We appreciate this continues to cause them stress and worry.