North East and North Cumbria Integrated Care Board

5. Mrs B complains on behalf of her and her sister, Miss C, about how North East and North Cumbria ICB (the ICB) handled Miss C’s continuing healthcare (CHC) care package in December 2022.

6. She says the ICB reduced Miss C’s weekend care package, and she disputes the reason for doing so. She says the ICB has not provided information to evidence its rationale despite her requests. She also says the ICB failed to take any action when she told it about her difficulty to cope with the extra caring responsibilities now Miss C’s care has been reduced.

7. Mrs B also complains about how the ICB has handled her complaint. She felt like nobody would talk to her and the ICB did not respond to her concerns in a timely way. She says the ICB has not provided copies of minutes from the 13 December 2022 meeting at which it decided to change Miss C’s care package, despite her requests.

8. Mrs B says the ICB’s actions have taken away her and Miss C’s freedom to enjoy life as neither can do the things they used to. She says she has had to take time off work due to stress and is now on antidepressants because of the impact this has had on her. She says how the ICB has handled her complaint has added to her frustration and has made the whole process harder than it needed to be.

9. Mrs B would like the ICB to acknowledge the mistakes it has made and to reconsider its decision relating to Miss C’s care package.

10. Miss C is in her 60s and has complex and intensive needs. She lives at home with her sister, Mrs B, and brother-in-law. She has been eligible for continuing healthcare (CHC) for over 16 years. This means the care she needs is primarily to manage a health need and the ICB funds all her health and social care needs. This includes support from a home care provider with activities of daily living. Miss C also attends a day centre four days a week and has 28 days of care a year at a residential and dementia care home.

11. On 1 November 2022 Miss C had an annual review of her health needs. On 2 November the ICB told Mrs B that Miss C’s health needs had not changed, and it would review her in 12 months.

12. On 13 December the ICB did a home visit to review Miss C’s care package. It informed Mrs B it planned to reduce the weekend care. It met with Mrs B on 19 January 2023 to discuss the changes in Miss C’s care package and carers moving from using a standing aid to a hoist to mobilise her.

13. On 7 March complained to the ICB about the reduction in Miss C’s care package. The ICB sent its response on 18 May 2023.

14. On 5 June 2023 Mrs B outlined her further concerns to the ICB. The ICB held a meeting with Mrs B on 4 September 2023 to address her concerns. On 12 September 2023 the ICB sent Mrs B a summary of the meeting.

15. On 13 October 2023 the ICB sent its final response. which provided updates on actions discussed at the meeting in September.

ICB reduced care package

19. Before it was changed after the 13 December 2022 meeting, Miss C’s care package was the same each week, but the hours of care and number of carers differed depending on the day. During the week, she had visits throughout the day by one carer. The number of hours per visit varied, and at specific times a second carer attended to support.

20. Then Miss C had one carer, 24 hours, from 2.15pm on Friday until 9.15am on Monday, plus an extra carer for half an hour to support in the mornings and evenings.

21. In addition, the package included 28 respite days a year for Miss C at the residential and dementia care home.

22. The ICB explained it regularly reviews care packages, and this can lead to changes in care hours and types of support, depending on the person’s needs. At the review in December 2022, the ICB said Miss C was sleeping well through the night and settled. There was no evidence to indicate she needed overnight care from Friday to Monday morning. It also said there was a change in how her needs were managed as she needed a hoist to mobilise. From 2 January, the care package changed for all days. The ICB also offered 288 floating respite hours per year for Mrs B to book carers as needed.

23. But Mrs B’s complaint is about the change to the weekend care. It decided her care could be met at weekends by five calls a day from two carers. The new weekend arrangement was:

24. Saturday and Sunday • 2 carers: 7.15am - 9.15am • 2 carers: 10.30am - 11.00am • 2 carers: 1.30pm - 2pm • 2 carers: 3.30pm - 4pm • 2 carers: 9pm - 10pm

25. Mrs B accepted removing overnight care at weekends. But she is very unhappy that the ICB also significantly reduced Miss C’s daytime care hours and has not properly explained why. She asked the ICB to at least agree to a carer every Saturday and Sunday from 2pm to 10pm, so they could take Miss C out to do activities and Mrs B could have a life of her own. The ICB refused but increased the floating respite hours to 520 per year – ten per week. Mrs B explains she must save those floating hours for hospital appointments, time off if Miss C is not at her day centre and for her own holidays.

26. Mrs B says she has cared for her sister for over 27 years, but it is now proving very difficult since the ICB took away the 1:1 care at weekends. She says she must care for Miss C when she gets home from work in the week, which she never minded as she got a break at the weekends. But now she can no longer do the things she used to at weekends, spend time with her husband or even do shopping or gardening, because she has to care for Miss C for much of the weekends. And Miss C herself has lost the chance to have carers take her out for activities at weekends. The ICB has not increased the hours since this change and in fact reduced the care by a further two hours a week in July 2024. Mrs B says she has suffered a breakdown and had to take time off work.

27. We have looked at the ICB’s rationale for changing the weekend care hours.

28. Paragraph 201 in the National Framework states that an ICB should regularly review an individual’s CHC care package. This should be within three months of the original eligibility decision, then at least an annually, although some people will need a more frequent review based on clinical judgement and changing needs.

29. Paragraph 203 says these reviews should primarily focus on whether the care plan or arrangements remain appropriate to meet the individual’s needs. Paragraph 189 says the ICB should ensure the agreed care and support package continues to meet the individual’s assessed health and associated care and support needs and agreed outcomes.

30. We know there was also a change in Miss C’s mobilisation needs. The plan going forward from January 2023 was for the care provider to use a full body hoist at home as per arrangements at the day centre and the residential and dementia care home (where Miss C was compliant). The change from a stand aid to use of a hoist and sling required two carers to ensure safe transfers. Our adviser said if a manual hoist is needed at a day centre and respite care facility then it should be used, for safety, at home.

31. The ICB said the use of a hoist, sling and two carers is not a change in need but a change in the management of a need. We do not think this is accurate. Our adviser said if an individual is unable to safely use a piece of equipment (the standing aid with one person) anymore and requires a hoist, it shows that there is a deterioration in that individual’s ability to weight bear and mobilise. They are at danger of causing themselves and carers injury when being moved.

32. When we weigh up the evidence, it does not support the ICB’s explanation about what the change in mobilisation care need meant for the management of Miss C’s need. The use of a hoist to mobilise her indicates a more significant need.

33. There is a lack of detail in the care planning documentation about how the amended care package meets Miss C’s needs. Other than the formal review on 1 November 2022, there are no further documented reviews setting out any changes in need. The day after that review the ICB told Mrs B her sister’s needs had not changed and it would review her in 12 months.

34. The ICB’s mentioned reasons for the change in the 13 December 2022 meeting minutes about the care package. These say the new case manager reviewed the care logs which indicated Miss C was a lot more settled and engaging, slept well at night (so no carer intervention overnight was needed) and that the professionals felt a full body hoist was a safer option to meet her mobility needs at home, with the assistance of two carers at all times. The ICB said the daily care offered would meet Miss C’s personal, continence, medication and nutritional support, as well as her assessed moving and handling needs. But it did not set out how.

35. The ICB did increase Miss C’s care hours to be used ‘flexibly’, but only by about four and a half hours per week. Before the significant reduction in care hours, Miss C had at least one carer with her throughout on Saturdays and Sundays and an extra carer for half an hour to support in the mornings and evenings, totalling 50 hours. This had been working well for many years. The new package, with Miss C’s care to be met at the weekends by five calls of just half an hour or an hour a day from two carers, totalled 18 hours. Even if we considered the additional four and a half flexible care hours as part of the weekend care, this totals 22 and a half hours, a huge decrease.

36. Our adviser said there is no correlation to an individual sleeping well at night (one of the reasons for the change in care package) and them needing less care and support during the daytime. As we set out above, the change from Miss C using a standing aid being mobilised by hoist evidences an increase in need. On the basis of the evidence we have seen, the ICB’s rationale is not sound. We cannot see it considered Miss C’s holistic needs when making such significant changes to her care package.

37. We have found a failing here. We do not think the ICB acted in line with the National Framework when it decided to significantly reduced Miss C’s care package. We have considered the impact of this.

38. Mrs B says the ICB did not take appropriate action when she told it about her difficulty to cope with the extra caring responsibilities now that Miss C’s care was reduced. She said she felt exhausted, her marriage and mental health was affected. The ICB did not provide additional hours of care support over the weekends. She has no further help from other family members to give Sharon the life she has always had.

39. Miss C has very complex needs that include a learning disability and a difficulty in dealing with change. She becomes very anxious and depressed when coping with change and this can make her unwell. Mrs B says without the previous care input from Friday afternoon to Monday morning, the ICB took away Miss C’s routine and ability to access social activities.

40. Mrs B says this took her and Miss C’s freedom to enjoy life as neither of them could do the things they used to. It has reduced their quality of life. Mrs B had to take time off work due to stress and is now on antidepressants because of the impact this has had on her. She is suffering from depression and anxiety.

41. We acknowledge Mrs B’s account. We can see she sent letters from her managers and fit notes from her GP which state she was unable to attend work due to stress caused by the reduced care package.

42. We cannot say what care hours Miss C should have at weekends, only the ICB can decide this. So we cannot say any of this could be avoided. What we can say is that, based on the evidence we have seen, the ICB has not accounted for the significant reduction in Miss C’s weekend care hours, based on a fair and holistic consideration of her care needs. This means there remains the possibility that the weekend care package is not enough to meet Miss C’s needs and she and Mrs B may have suffered more than they should have done.

ICB complaint handling

43. Mrs B is unhappy with how the ICB handled her complaint. She felt like nobody would talk to her and the ICB did not respond to her concerns in a timely way. She says the ICB did not provide copies of minutes from the 13 December 2022 meeting at which it decided to change Miss C’s care package, despite her numerous requests. She did get the 19 January 2023 meeting minutes.

44. We can see Mrs B sent her first letter of complaint on 7 March 2023. This included a request for copies of the meeting minutes. The ICB sent its response on 18 May 2023 addressing her concerns. It said it did share copies of minutes from the review meeting on 13 December 2022.

45. On 6 June 2023 Mrs B’s advocate sent a second letter of complaint. She requested a meeting to discuss and again asked for the copies of minutes. The ICB sent its response on 15 September 2023, but there was no mention of the meeting minutes.

46. The NHS Complaint Standards, ‘Being thorough and fair’ says that staff should discuss timescales with everyone involved in the complaint and agree how people will be kept informed and involved. They should provide regular updates. Staff make sure everyone involved in a complaint know how they will investigate the issues. Staff should give everyone involved in a complaint the opportunity to give their views.

47. The ICB took just over two months to respond to Mrs B’s first complaint and a little over three months to respond to her second complaint. The NHS complaints regulations indicate an organisation should respond to a complaint within six months. But the actual time depends on the circumstances of each case. We can see there does not appear to have been much delay in the ICB responding to Mrs B. On the odd occasion when there was a slight delay, this was due to circumstances outside the ICB’s control. For example the complaints team case handler went on long term leave, but the ICB promptly allocated the case to a senior complaints officer.

48. We can see Mrs B held meetings with the ICB, so we know it did speak to her. And we can see lots of other contact, including phone calls with the complaints team. We understand she was very unhappy with the change in care package and that she had to make a complaint about it, so we can understand why she felt the ICB was not listening to her. We can see the ICB was keeping in touch with her, including by phone, and we cannot say it got anything wrong. It is clear the ICB was trying to arrange to talk to her so she could give her views.

49. We understand why Mrs B wanted the ICB to respond and meet with her really quickly. We think it did that as quickly as it could taking everything into account.

50. But the ICB did not adequately ensure she had access to a copy of the 13 December meeting minutes. The ICB believed it had sent Mrs B copies of the minutes, but it was clear from her second complaint letter that she did not have them. The ICB did nothing to put this right and it did not mention them again. We do not think the ICB acted in line with the NHS Complaint Standards as it was not customer focused here.

51. When we weigh up the evidence we have seen, we cannot see the ICB got anything wrong in how long it took to respond to Mrs B’s complaint, or in how it communicated with her about her concerns. We have found a failing in that the ICB failed to provide minutes from the 13 December meeting. We have considered the impact of this.

52. Mrs B says how the ICB handled her complaint added to her frustration and made the whole process harder than it needed to be. She wanted detailed information of the discussion on 13 December 2022, when there was such a significant change in care plan. We can see how making repeated requests for the minutes, that the ICB apparently ignored, was frustrating for her, especially as she now had to take on much more caring responsibility for Miss C.

What the ICB has done to put things right

53. The ICB said although it did not uphold the original complaint, it accepts that the change in the care plan and the change to use of a full hoist will have been difficult to adjust to. The ICB told us it apologises for any distress that this caused to Miss C and Mrs B.

54. We do not think this is enough. The ICB has not acknowledged it got anything wrong in how it decided to change Miss C’s provision of care. The ICB has not acknowledged the failings in its complaint procedure.

1. We have set out below our final decision on this case. Based on the information we have seen, we will partly uphold the complaint.

2. We have found the ICB did not act in line with the National Framework when it made a significant change to Miss C’s weekend care package. We cannot say what Miss C’s care hours should be, but we do not think she and her sister, Mrs B, have had a fair and holistic consideration of her needs. The ICB also did not send Mrs B a copy of the minutes from the meeting when it decided this. This added to Mrs B’s frustration.

3. To put this right, we recommend the ICB should acknowledge what it got wrong, apologise for the impact this had on them both and explain what it has learned from the complaint. We also recommend it reviews its decision to significantly reduce Miss C’s care package and make any necessary amendments.

4. We recognise this was a difficult time for Mrs B to get the right level of support for her sister. It is clear how important this complaint is to the family.

55. In considering our recommendations, we have referred to the ‘NHS Complaint Standards’. These state that NHS organisations should be open and honest when things have gone wrong, recognise when this has had an impact on people, and identify suitable ways to put things right.

56. The ‘NHS Complaint Standards’ also say that NHS organisations should identify what learning they can take from a complaint, and where they can make improvements.

Recommendation 1

57. We recommend that within one month of the date of this report, the ICB should write to Mrs B to acknowledge it did not act in line with the National Framework when it decided to reduce Miss C’s care hours in December 2022, and therefore she and Mrs B have not had a fair and holistic consideration of her needs from that point.

58. The ICB should also acknowledge that it failed to recognise Mrs B did not have the 13 December 2022 meeting minutes and send those to her. It should apologise that this caused Mrs B significant frustration.

59. When the ICB writes to Mrs B it should explain what it has learned from her complaint and what it will do differently as a result in future.

Recommendation 2

60. We recommend the ICB should review Miss C’s weekend care needs and whether the care package in place since January 2023 has been meeting those.

61. If this review concludes the care package has been adequate, it should give Mrs B a full explanation of its rationale and how the care package meets Miss C’s assessed needs.

62. If this review concludes the care package was not adequate, it should make the appropriate amendments, clearly explaining to Mrs B how the package it decides on meets Miss C’s assessed needs. It should also consider the impact on Miss C and Mrs B since January 2023 and how it can put that right.

63. Within one month of the date of this report, the ICB should provide Mrs B with a timetable for this work.

64. The ICB should comply with our recommendations and should send us evidence it has done this.