Summary: Mrs B complained about the health and social care support provided by the Council and the NHS Trust after she removed her late husband, Mr B, from a respite placement and took him home. She also complained about the way the former Clinical Commissioning Group (CCG and now Integrated Care Board) considered whether
Mr B was eligible for healthcare funding. She said the events had adverse impact on her and her husband. We found the Council and the Trust failed to work together to complete a holistic assessment and this led to a disjointed approach when providing health and social care support. As a result, it is likely Mrs B experienced increased carers strain and avoidable worry and distress. There was fault in the way the CCG considered Mr B’s eligibility for healthcare funding, but it acted to put things right. The Council and the Trust have agreed to our recommendations and will apologise to Mrs B for the lack of joint working, make an acknowledgement payment and improve.

The complaint

1. The complainant, who I shall refer to as Mrs B, complains about the care and support provided to her late husband after he returned home from a respite placement. She says the support and advice provided by two officers from Lincolnshire County Council (the Council) was poor. She said the Council did not act quickly enough to ensure enough domiciliary care and support was in place. She complains about the way the former NHS clinical commissioning group now NHS Lincolnshire Integrated Care Board’s (the CCG) assessor considered her husband’s entitlement for continuing healthcare funding. The complainant also says nurses from Lincolnshire Community Health Services NHS Trust were uncaring and did not provide care and support when she asked for assistance with palliative care. Mrs B says all the authorities involved failed to recognise her husband needed end of life care.
2. Mrs B says the events had adverse impact on her needs as a carer as she felt unsupported. She also says she experienced avoidable distress and frustration. To put things right she seeks a financial remedy and for lessons to be learnt by the authorities complained about.

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The Ombudsmen’s role and powers

3. The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, these complaints have been considered by a single team acting on behalf of both Ombudsmen. (Local Government Act 1974, section 33ZA, and Health Service Commissioners Act 1993, section 18ZA)
4. The Ombudsmen cannot question whether an organisation’s decision is right or wrong simply because the complainant disagrees with it. We must consider whether there was fault in the way the decision was reached. (Local Government Act 1974, section 34(3), as amended, and Health Service Commissioners Act 1993, sections 3(4)- 3(7))
5. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

6. To investigate this complaint, I considered:
• information provided by the complainant in writing and verbally by telephone.
• information provided by the authorities complained about in response to our enquiries; and
• the law, guidance and established good practice relevant to this complaint.
7. All parties had an opportunity to respond to a draft of this decision.

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What I found

The law and guidance relevant to this complaint

8. Section 27 of the Care Act 2014 says councils should keep care and support plans under review. Government Care and Support Statutory Guidance says councils should review plans at least every 12 months. Councils should consider a light touch review six to eight weeks after agreeing and signing off the plan and personal budget. They should carry out reviews as quickly as is reasonably practicable in a timely manner proportionate to the needs to be met. Councils must also conduct a review if an adult or a person acting on the adult’s behalf makes a reasonable request for one.
9. The Department of Health’s National Framework for NHS Continuing Healthcare and NHS‑funded Nursing Care (November 2012 (Revised)) (the National Framework) was the key guidance about Continuing Healthcare and was relevant at the time of events complained about.
10. NHS Continuing Healthcare (CHC) is a package of ongoing care that is arranged and funded by the NHS where a person has been assessed as having a ‘primary health need’. CHC funding can be provided in any setting and can be used to pay for a person’s residential nursing home fees in some circumstances.
11. Assessments of eligibility for NHS continuing healthcare and NHS-funded nursing care should be organised so that the individual being assessed and their representative understand the process, and receive advice and information that will maximise their ability to participate in informed decision-making about their future care. Decisions and rationales that relate to eligibility should be transparent from the outset for individuals, carers, family and staff alike.
12. The Decision Support Tool is not an assessment in itself. Rather, it is a way of bringing together and applying evidence in a single practical format, to facilitate consistent, evidence-based decision-making regarding NHS continuing healthcare eligibility. The evidence and the decision-making process should be accurately and fully recorded.
13. Individuals with a rapidly deteriorating condition that may be entering a terminal phase, may require ‘fast tracking’ for immediate provision of NHS Continuing Healthcare.
14. The Nursing and Midwifery (NMC) issued The Code in 2009 (updated 2015). This sets out standards of conduct, performance and ethics for nurses and midwives. It says clear and accurate records should be kept of discussions, assessments, treatment, and medicines given, along with how effective these have been.
15. The National Institute for Health and Care and Excellence, ‘End of Life care for adults: service delivery’ [NG142] covers organizing and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers.
16. Integrated Care Boards (ICBs) replaced clinical commissioning groups (CCGs) in the NHS in England from 1 July 2022. Reference to CCG is relevant to this complaint as at the time of events CCGs were in existence.

Background

17. Mrs B’s late husband, Mr B, had dementia and had previously been assessed by the Council in 2015. The Council arranged for direct payments to provide for
    a personal assistant to support with 16 hours of care weekly. Mr and Mrs B’s daughter became his personal assistant. The personal budget increased to provide for holidays and day care. Mr B also received support from mental health services due to his challenging behaviour which included aggression.
18. The community nursing team reported concerns to the Council as the nurses felt the care package was not enough to meet Mr B’s needs because of his health and an increase in challenging behaviour. A community nurse also felt
    Mrs B was at the point of carer’s breakdown. The Council allocated a social worker to work jointly with the Trust’s community nursing team.
19. Mr B went into the respite placement on 14 January 2021 following a decision made by Mrs B and the multidisciplinary team (MDT) which included the Council and the community nursing team.
20. Mrs B held Lasting Power of Attorney for Mr B for health and welfare and property and financial affairs. As such she was able to make decisions on his behalf when Mr B did not have capacity to make specific decisions. The Council accepted
    Mrs B as her husband’s attorney because Mr B’s cognition had impact on his ability to communicate effectively.
21. The Council started to review Mr B’s needs from 27 January when he was still in the respite placement. The evidence available notes a ‘light touch review’ was started on this date. He returned home from the respite placement on 28 January.
22. The Council said it had not anticipated Mr B returning home so soon, but Mrs B had decided to bring him home sooner than planned. This was because she was concerned about his placement in the care home. Mrs B also made an earlier complaint to the LGSCO about Mr B’s care in the respite placement. This has been investigated separately from this complaint.
23. Mrs B later complained about the Council’s actions once Mr B returned home. She also complained about the continuing healthcare assessment process organised by the CCG and the actions of the community nurses working for the Trust.

The care and support provided by the Council

24. Mrs B said she asked the Council to provide two support calls daily in the morning and evening to go alongside the informal care she provided. She said the Council only provided one support call initially.
25. Documents from the Council show it initially asked its brokerage service to source two carers to provide two support calls daily in the morning and the evening. It later changed the request to one carer twice daily based on Mrs B’s request. The brokerage team told the social worker the care provider needed a risk assessment for Mr B because the request referred to his challenging behaviour. However, the Council did not have one available.
26. The Council’s records show it communicated with Mrs B to update her about what was happening with arranging care for Mr B. Its social worker advised Mrs B to use the direct payment in place to select a care agency from the care directory pending the risk assessment being sent to the commissioned care provider before it would provide care.
27. A community nurse contacted the Council at the beginning of February to express concern about Mr B returning home without a clear plan of how to manage the risk identified at the previous MDT meeting. The records note the risks to Mr and Mrs B were ‘incredibly high… due to the level of aggression and how often it was occurring’.
28. Mrs B told social services she wanted a change of social worker. The Council appointed a new social worker who contacted Mrs B on 13 May. The Council said the previous social worker had arranged to complete a review of
    Mr B’s needs with a date set for the following week. It said Mrs B cancelled this appointment because she was writing a letter of complaint.
29. The Council responded to Mrs B’s complaint and apologised for the manner and tone the previous social worker had used when talking to her on one occasion.
30. The Council received a referral to attend Mr B’s Decision Support Tool (DST) meeting with the CCG’s healthcare assessor. The social worker attended Mrs B’s home rather than attending virtually. Mrs B said this meeting lasted three hours during which time her late husband exhibited increased care needs.
31. Mrs B said following this meeting she received the outcome of the DST which she did not understand. She also said Mr B became more unwell over the next few days and had to call for a doctor to attend to examine him. She said he was bed bound and she was concerned because of limited homecare support in place.
32. Mrs B said she called the social worker and left a message on her phone explaining Mr B was deteriorating and needed palliative care. She said she did not receive a reply so called again the next day and left a similar message. The social worker called Mrs B back and said she would visit the next day. This did not happen.
33. When responding to Mrs B’s complaint the Council established the social worker had left a voicemail message for Mrs B telling her she could not attend the appointment as she was unwell. The social worker said she would attend on
    28 May which was a couple of days later. When the social worker visited Mrs B’s home on that date Mr B had already died.

Findings

34. The evidence available suggests Mr B had increased needs before he went into the respite placement. The personal assistant support in place together with the informal support provided by Mrs B was not enough to meet his needs. Therefore, the period of assessment in the respite placement was arranged.
35. The Council review of Mr B’s needs in the respite placement was cut short when Mrs B took him home at short notice because she was unhappy with the care provided. The Council then had to act quickly to source a care and support package for Mr B and to support Mrs B. The Council did not delay in making the request to its brokerage service.
36. The care provider the Council communicated with asked it to provide a risk assessment, but the social worker confirmed a current or previous one was not available. It would have been good practice to have completed a risk assessment earlier because it was aware of Mr B’s challenging behaviour before he went into the respite placement.
37. The Department of Health’s ‘Nothing Ventured, Nothing Gained’: Risk Guidance for people with dementia, provides best practice on managing risk. This says ‘a good risk assessment should demonstrate that risk has been assessed and managed taking into account all perspectives and all aspects of the individuals needs. Practitioners should demonstrate that they have used all means available to skilfully communicate with the person with dementia to best understand their individual needs.’
38. I have not seen evidence to show the Council’s social worker communicated with Mrs B to assess the risks once Mr B returned home. This is fault and likely to have led to Mrs B not receiving specialist knowledge and experience to help her manage any risks she was trying to manage.
39. Mrs B said she asked the Council to provide an evening carer to help her wash Mr B and put him to bed. The evidence available shows the Council had requested an evening carer from its brokerage service. However, the care agency could not provide one quickly.
40. The social worker told Mrs B she could use the direct payment to try and source an evening carer. Mrs B said she did not understand the direct payments process and did not know how to go about sourcing a carer. I have not seen evidence to show the Council provided her with enough support or signposted her to support to enable her to arrange a carer using direct payments. This is fault.
41. The Council was aware Mrs B was at risk of carer strain as this was why Mr B went into the respite placement. The lack of support is likely to have contributed to Mrs B experiencing carer strain in the evening.
42. The evening care from the commissioned care agency did not start until about four weeks after the Council made the request. The Council said it does not routinely provide night-time care. The Council has a statutory duty to meet a person’s needs and in this case it accepted Mr B needed an evening carer to meet his needs. Although the Council had to act quickly to source support there appears to be a lack of choice in the care providers it contacted. This is likely to have contributed to the delay in providing evening support. The delay is likely to have had adverse impact on Mrs B due to the increased support she would have needed to provide to her husband.
43. I have not seen evidence to show the Council properly assessed Mr B’s needs during the four months after he left the respite placement and before he died. The previous MDT discussion assessed the risks to Mr and Mrs B and led to the respite placement.
44. The Council should have continued working with the NHS Trust to ensure a holistic assessment was completed which considered Mr B’s wellbeing and his social and health care needs. The Council did not do this and is at fault. The lack of joined up approach is likely to have led to Mr B not having a personalised care and support plan and a lack of support for Mrs B.

The Care and Support provided by the NHS Trust

45. A member of the Trust’s community nursing team updated its records on 5 February 2021 to note Mr B was home from the respite placement. The nurse noted the Council’s social worker, and a community psychiatric nurse were due to complete an assessment in a couple of weeks and a package of care was in place. The nurse noted a plan to contact Mrs B on 16 February.
46. The Trust’s Rapid Response Team received a community therapy referral from Mr B’s GP a few days later. Its records show it transferred Mr B’s case to its Community Therapy Service. The referral noted Mr B needed help with daily care.
47. The Trust also received a referral from the care provider requesting occupational therapy equipment on behalf of Mrs B. The referral form noted ‘wife has requested walking frame and bed rails.’ The Trust triaged the referral and noted the following, ‘unable to accept referral for bed rails. Will need input from OT’s at adult social care.’
48. Following discussion with the care provider the Trust decided Mr B would benefit from a frame to support himself when receiving personal care as he was using the back of a chair to support himself. The Trust added the equipment request to its routine waiting list.
49. A Complex Community Practitioner (CCP) contacted Mrs B by telephone on 16 February to see how she was managing. Mrs B said she wanted help in the evening to help with personal care, but the social worker had told her this was not available. The nurse recorded ‘will put a call/visit in for next month to see how he is getting on. No further input required at this time for CCP... Patient may need to remain on the caseload for palliative support’.
50. A nurse contacted Mrs B by telephone a month later and checked that Mrs B had the telephone number to contact if she had any concerns. A nurse went to visit Mr and Mrs B in April and agreed to speak to the CCP to review Mr B. The CCP contacted Mrs B by telephone. The CCP agreed to provide monthly palliative support.
51. A nurse visited Mr and Mrs B again on 12 May. The nurse noted the report from Mrs B that her husband had deteriorated in recent weeks, stayed in bed more and was unstable on his feet. The CCP carried out a review of the visits five days later. The CCP noted ‘may require pre-emptive medication’. The CCP noted the DST was due and could not attend but provided written evidence to be considered as part of the DST.
52. A community nurse visited Mr B again on 25 May following a request made because of his decline in health. Mrs B told the nurse her husband had lost a lot of weight over the last couple of weeks and had poor fluid and nutritional intake. She also said she struggled to give him medication as he was not eating and drinking much. The nurse noted the medication was in liquid form.
53. The nurse decided that Mr B would not qualify for end-of-life care because he was eating and drinking, had good urine output and bowel movement. The nurse noted an in-depth conversation with the CCP who referred to the previous MDT which decided Mr B should go into a respite placement. However, Mrs B wanted Mr B to remain at home for end-of-life care. The nurse advised Mrs B to call if there were any changes.
54. A different community nurse visited Mr B two days later following a phone call from Mrs B. The nurse noted Mr B was unable to swallow his medication. The nurse noted there was no pre-emptive medication in the home or prescribed. She recorded that once pre-emptive medication was prescribed a syringe driver would be needed to prevent seizures. The nurse contacted Mr B’s GP who had visited Mr B a week earlier. The GP agreed with the nurse that Mr B had entered the last days of his life.
55. The nurse completed a full skin inspection and noted several vulnerabilities to pressure areas such as Mr B’s heels and hips. The notes state the mattress in place did not meet his needs. The nurse placed an urgent order for an air flow mattress.
56. The nurse visited later the same day and commenced the syringe driver because Mr B could not swallow his medication. The nurse provided advice on how to check Mr B’s skin integrity and left a pressure area care leaflet and chart on
    re-positioning for carers to complete to avoid pressure damage. The nurse also provided advice on nutrition and hydration to minimise the risk of dehydration and urine infection to Mr B.
57. The nurse left a gold folder in the property. The gold folder is a file containing information relating to ongoing palliative care needs. This was provided the day before Mr B died.

Findings

58. The Trust was involved with Mr B before he went into the respite placement and was aware of his increased needs. It was part of the MDT that decided Mr B should go into the residential placement. The Trust’s officer contacted the Council in early February to express concern that Mr B had returned home without a clear plan of how to manage the high risks identified at the MDT meeting.
59. The Trust confirmed Mr B as having a life limiting condition, but he was not considered end of life when the CCP considered his case. It decided to monitor his case monthly initially by telephone contact. Despite being aware of the immediate risks to Mr B the Trust’s officer did not arrange to visit Mr B to assess his health needs and create a care plan. This is fault. This is likely to have led to a lack of adequate healthcare support for Mr B and carers support for Mrs B and the commissioned carers.
60. Although the Trust had telephone contact with Mrs B a nurse did not visit Mr B until about two months after he had returned from the respite placement. It would have been good practice for the Trust to have ensured there was a lead healthcare professional to assume clinical responsibility for the delivery of Mr B’s care. This is in line with NICE guideline [NG142].
61. The evidence available strongly suggests the Trust did not complete a proper care plan until the day before Mr B died. The Trust should have acted in line with NICE guidance and worked with the Council to complete a holistic assessment of Mr B’s needs. This would have ensured better coordination to meet Mr B’s needs.
62. I have not seen evidence to show the Trust provide advice and written information to Mrs B when it should have done. When responding to Mrs B’s complaint the Trust acknowledged it did not provide the gold folder to Mrs B. The evidence available shows it did not do so until the day before Mr B died. This is fault.
63. The Trust said the gold folder would have contained a list of contact telephone numbers which would have been beneficial to Mrs B. It is also likely the folder would have contained information to support Mr B’s carers such as information on pressure sore care, a repositioning chart and information about medication. Fault by the Trust is likely to have led to Mrs B feeling unsupported.
64. Mrs B said her husband had pressure sores when he died. The nurse who visited Mr B noted several vulnerabilities to pressure areas on certain parts of his body. The Trust left Mr B with a mattress that did not meet his needs for about a month longer that it should have as it could have provided the air flow mattress in
    April 2021. The delay by the Trust is likely to have increased the risk of Mr B developing a pressure sore. The Trust apologised to Mrs B when it responded to her complaint.
65. Mrs B said the Trust should have put the syringe driver in place sooner. Mr B’s general practitioner visited him on 20 May and did not decide to put end of life medication in place. When the nurse visited Mr B on 25 May she was made aware Mr B was struggling to take medication orally as noted in the Trust’s records. The Trust said the nurse did not recognise Mr B’s deterioration or consider an alternative method of medication administration. This is fault.
66. The Trust did not have a clear written care plan about medication in place. For example, although the CCP had noted two weeks earlier that Mr B may need
    pre-emptive medication this was not followed up by the CCP. The Trust’s nursing team should have contacted Mr B’s GP two days earlier than they did to ensure a shared understanding of what medication Mr B needed. Because Mr B was not taking medication orally it is more likely than not a different method of medication administration would have been agreed. Therefore, I find the Trust at fault.
67. Mr B’s health had deteriorated further between the visit on 25 May and the visit on 27 May. The Trust’s records suggest Mr B had become more unresponsive. The nurse at this visit did contact the GP to ensure Mr B had the medication he needed. This was an appropriate response which ensured Mr B was provided with the medication he needed.

The former CCG’s (now ICB) assessment of Mr B’s health needs

68. In April 2021 the CCG received a CHC healthcare checklist from the community psychiatric nurse working with Mr B. The DST assessment took place about a month later.
69. Mrs B contributed to the DST but the CCG assessor together with input from the social worker decided Mr B did not have a primary health need. This meant he was not eligible for healthcare funding to meet his needs.
70. The CCG sent Mrs B an outcome letter to confirm the outcome of the DST. After Mr B had died Mrs B complained to the CCG as she felt the assessor had got the decision wrong and referred to the fact that Mr B had died nine days after the assessor completed the DST.
71. The CCG responded to the complaint and said it had reviewed the DST completed by the assessor. The CCG said, 'the care you provided for your husband was not fully considered within the recommendation made.’ The CCG said it could not say whether proper consideration would have changed the recommendation made on the day but accepted it was an error. The CCG offered to refund any money Mr or Mrs B had paid for care from the date the DST was completed.
72. The CCG acknowledged the concern Mrs B had expressed about the care provided by the Council and the Trust’s community nursing team. It said it could not investigate these concerns but encouraged Mrs B to report her complaint to the organisations directly.

Findings

73. The CCG accepted there was fault in the way its assessor considered Mr B’s eligibility for healthcare funding when completing the DST. We agree there was fault in the CCG’s CHC process.
74. Mrs B did not ask the CCG to formally review the DST but because of her dissatisfaction with the outcome the CCG did undertake a review. This is good practice. The CCG said it could not say whether the outcome would have been different if the assessor had properly considered the informal care provided by Mrs B. This is wrong.
75. The CCG had experience of carrying out retrospective reviews, for example, when looking back at an individual’s unassessed healthcare needs over a period. The CCG could have considered all the information at the time as well as any information that should have been considered but was not. It then could have said whether Mr B had a primary health need at the time he was assessed. Therefore, I find the CCG at fault.
76. The fault identified does not cause injustice to Mr B or Mrs B. This is because the CCG reviewed the DST after Mr B had died and was unable to affect the care package he received at the time. It also offered to repay Mrs B any money paid for care fees. This remedies any financial loss to Mr B’s estate or to Mrs B. Mrs B can accept the CCG’s offer if her or Mr B paid for care fees from the date the DST was completed.
77. Mrs B feels if a different CHC eligibility decision was made at the time the DST was completed this would have resulted in Mr B receiving a different care package. Although a positive CHC decision would have resulted in different funding arrangements we cannot say whether this would have resulted in a different care package. This is because Mr B already had a care package in place at the time.
78. The CCG said the information in the DST, even after its review, did not indicate that Mr B would have been eligible for fast-track funding. At the time of the DST there was no indication from anyone present, including Mrs B, that Mr B required fast tracking because of a rapidly deteriorating condition. The CCG could not consider fast-track unless it received a referral from an appropriate health professional.

Action taken to Improve

79. The authorities complained about provided information to the Ombudsmen to show improvements made which directly relate to this complaint.
80. The Council used the learning from Mrs B’s complaint and others to share good practice with its adult social care teams. Examples included reminding its officers to have early conversations with people to establish risk and urgency. Contacting respite placements after 48 hours to see how the person is. If in respite plan how risks will be reduced and how a return home will work for someone and have an exit plan. Ensure relevant written advice is given as early as possible.
81. The Trust discussed staff attitudes and behaviours with the individual staff involved in Mr B’s case as direct of result of the concerns raised by Mrs B. The nursing team undertook training relating to recognising deterioration in patients. It also said the team now undertake monthly face-to-face visits rather than telephone calls.
82. The CCG discussed Mrs B’s complaint as a lesson learnt with the assessor and all clinicians within the CHC team. It reminded its staff of the importance of considering verbal evidence and the care family members give when completing DSTs.
83. As the authorities have made appropriate service improvements it is not necessary for the Ombudsmen to recommend improvements in the areas outlined above.

Conclusion

84. Faults by the Council and the Trust caused Mrs B injustice as she experienced increased carer’s strain and avoidable worry and distress. Mrs B contributed to some of the harm she suffered because she decided to remove her husband from the respite placement without there being an exit plan and care package in place.
85. There was fault by the CCG in the way it considered Mr B’s eligibility for healthcare funding, but it acted to put things right before Mrs B complained to the Ombudsmen.
86. All the authorities acted to improve after responding to complaints from Mrs B.

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Agreed recommendations

87. Within four weeks of our final decision the Council and the Trust have agreed to our recommendations and will:
• jointly write to Mrs B and apologise for the impact the failure to work together to complete a holistic assessment had on her.
• each pay Mrs B £400 to acknowledge the carer strain she experienced and avoidable worry and distress.
• remind their staff about established good practice and the need to work jointly to complete holistic assessments when necessary to ensure the wellbeing and health and social care needs of individuals are considered.

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Final decision

88. I have found fault by the Council the Trust and the former CCG and uphold
    Mrs B’s complaint. The organisations acted to improve, and the Council and the Trust have agreed to our recommendations to remedy the injustice caused. I have completed the investigation.

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Investigator's decision on behalf of the Ombudsman