Summary: Mrs B complained about the end of life care and support provided to her late mother, Mrs C, by the Council and the Trust after her mother left hospital in late 2020. We found fault by the Council as it did not review Mrs C’s care and support plan when her needs changed. Because of this the care Mrs C received did not always meet expected standards. The Trust did not complete a formal assessment or liaise with Mrs C’s doctor when it decided she was not eligible for fast track healthcare funding. This left Mrs B with uncertainty about her mother’s entitlement to healthcare funding. The Council and the Trust have agreed to our recommendations and will apologise to Mrs B and her siblings, make acknowledgement payments, and take steps to improve.

The complaint

1. The complainant, who I shall refer to as Mrs B, complains about the care and support provided to her late mother, Mrs C, when she was a resident in a Derbyshire County Council (the Council) care home. The complainant says the Council and Derbyshire Community Health Services NHS Foundation Trust (the Trust) failed to ensure her mother was provided with adequate social and clinical care during the final months of her life. She says the care home failed to acknowledge her mother’s clinical diagnosis and prevented Mrs C’s family from visiting her as agreed. Mrs B also complains about errors with medication, poor advice about gifting from Mrs C’s funds, insufficient staffing in the home and a failure to manage her mother’s risk of falls.
2. Mrs B says the alleged faults caused her avoidable stress, anxiety and increased frustration due to a lack of transparency by the Council and the Trust. To put things right she would like the Council and the Trust to acknowledge fault, apologise and pay a financial remedy to include a partial refund of care fees as she says her mother’s care fell below expected standards. Mrs B feels the Council and Trust should learn lessons from this complaint and improve.

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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.
• the responses to my first draft decision about this complaint.
7. All parties had an opportunity to respond to a second draft of this decision.

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What I found

The law and guidance relevant to this complaint

8. A council must make enquiries if it has reason to think a person may be at risk of abuse or neglect and has care and support needs which mean the person cannot protect themself. An enquiry is the action taken by a council in response to a concern about abuse or neglect. An enquiry could range from a conversation with the person who is the subject of the concern to a more formal multi-agency arrangement. A council must also decide whether it or another person or agency should take any action to protect the person from abuse. (section 42, Care Act 2014)
9. 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.
10. 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.
11. 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. It states that where an individual is eligible for Continuing Healthcare funding the Clinical Commissioning Group (CCG) is responsible for care planning, commissioning services and case management.
12. 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.
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.

The intention of the Fast Track Pathway is that it should identify individuals who need to access NHS Continuing Healthcare quickly, with minimum delay, and with no requirement to complete the Checklist or the Decision Support Tool (DST). Therefore, the completed Fast Track Pathway Tool, which clearly evidences that an individual is both rapidly deteriorating and may be entering terminal phase, is in itself sufficient to establish eligibility.

14. A person can make a claim for CHC funding after a period of care has elapsed, for example, on behalf of someone who has died. In 2012 the Department of Health introduced a single national process, to determine whether an assessment should be carried out for previously unassessed periods of care. It also introduced set timescales for people to notify the NHS that they should have been assessed for eligibility for NHS CHC funding with respect to that care. The responsibility to ensure the process was followed passed from Primary Care Trusts to Clinical Commissioning Groups in April 2013.
15. The General Medical Council (GMC) has issued the guidance Treatment and care towards the end of life: good practice in decision making. It says that doctors “must plan ahead as much as possible to ensure timely access to safe, effective care and continuity in its delivery to meet the patient’s needs”. There is no guidance which says exactly when GPs should prescribe anticipatory end of life medication. Typically, it is prescribed when a GP considers that the patient is likely to need this medication in the next few days to small number of weeks. This depends on the GP’s judgement.
16. The World Health Organisation (WHO) developed a “ladder” for pain relief in people with cancer, which doctors use as guidance for pain control. It explains that doctors should start trying to manage pain with weaker drugs first, and change to stronger ones when the weaker ones do not work.
17. 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.
18. The following (General Medical Council) definition for end of life care is widely accepted. It says:

‘People are approaching the end of life when they are likely to die within 12 months. This includes people whose death is imminent (expected within hours or days) and those with advanced, progressive, incurable conditions; general frailty and co-existing conditions that means they are expected to die within 12 months; existing conditions if they are at risk of dying from a sudden acute crisis; and life-threatening conditions caused by catastrophic events’.

19. The National Institute for Health and Care and Excellence ‘Falls in older people; assessing risk and prevention’ [CG161], provides the necessary link between falls assessment and management in community and hospital settings. The focus on falls management in the community is on risk identification, multifactorial risk assessment in those identified as being at risk, and multifactorial interventions in older people with recurrent falls or increased risk of falling.
20. The Office of the Public Guardian practice note is called ‘Giving gifts: a guide to the legal background for deputies and attorneys’. This practice note gives detailed guidance on how deputies and attorneys should approach giving gifts on behalf of the person they act for.
21. The Council has information about paying for residential care on its website. The information it provides says, ‘If you do intend to make large purchases or gifts it is worth checking with us first to see how this might affect your charge for care. You should always keep receipts or records of payments in the event of any queries later on. If you make gifts from your capital whilst you are receiving care services then we may treat you as though you still own the capital and charge you accordingly’.
22. ‘Derbyshire County Council Adult Social Care Guidelines for Visitors to Derbyshire County Council’s Residential Care Settings Practice Guidance’ was in place at the time of the events complained about. It also followed the Department of Health & Social Care’s ‘Guidance on care home visiting’ which has since been withdrawn.

Background

23. Mrs C lived at home and received formal support from a carer and informal support from Mrs B and other family members. She had a diagnosis of dementia as well as other health problems.
24. Mrs B experienced some health issues and this affected her ability to provide informal care and support to her mother, Mrs C. Due to a breakdown with the formal carer Mrs C moved to respite accommodation for a period of respite. Ater looking at various homes the family decided on the Council’s care home, Home X. This placement later became permanent.
25. Mrs B said her mother settled well into Home X and formed a good relationship with another resident. When she had concerns she could raise matters informally with the care home and these were resolved. Mrs B said Home X’s response to issues became worse after her mother’s friend died and the family complained about the way this was handled by the home. By this time Mrs C had been living in Home X for about 18 months.
26. Between February and March 2020, the Council’s Finance Team had discussions with Mrs C’s son about its financial assessment. The email correspondence refers to gifting, Mrs C’s personal expenses allowance and allowances the Council would make for bills that needed to be paid. The Council also explained what process it would follow to allow Mrs C to continue to gift to her grandchildren and great-grandchildren.
27. In June 2020 Mrs C went into hospital as her health had deteriorated. Mrs B said her mother recovered quite well and returned to Home X. Mrs B’s sister contacted Home X as they were concerned about her mother’s health and weight loss following a video call.
28. Mrs B said after Mrs C’s GP practice became involved, she and other family members were told their mother was nearing the end of her life. Mrs B said
    Home X agreed to half hourly visits twice weekly by one family member, but she said Home X refused to agree to exceptional visits because of Mrs C’s prognosis.
29. The Council sent a CHC fast track funding referral to Mrs C’s medical practice in mid-November. A nurse practitioner replied and said the referral needed to be sent to the district nurses.
30. The Community Access Patient Record provided by the Trust shows that Mrs C’s medical practice made an urgent referral for CHC fast track funding a day after being contacted by the Council. The referral said ‘can [District Nurses] urgently do continuing health needs assessment/fast track as [Mrs C] has presumed malignancy and on clinical presentation and in her last days of life. If her family cannot gain access [to Home X] they will want to take her home so this fast track will prepare that process.’
31. Mrs B reported concerns to the Care Quality Commission (CQC) because Mrs C appeared unwell at Home X, and they felt staff did not recognise her condition or arrange family visits based on exceptional circumstances. The Council received a safeguarding referral from the CQC in November 2020.
32. The Council’s social worker contacted the Trust’s Community Health Services team in early December requesting CHC fast track funding. The record provided by the Trust states '...Not urgent for today. Our record shows that a request for fast track was made previously too but no record of fast track’.
33. A member of the Community Nursing Team visited Mrs C on 4 December. The notes state the visit was to assess for fast track. The assessor spoke to Mrs C and spoke to a senior carer in Home X. The carer said Mrs C had been unwell with a chest infection but she had improved following a course of antibiotics. The Community Nursing Team then decided to discharge Mrs C from their caseload.

The Council’s first safeguarding investigation

34. The safeguarding referral said Mrs C’s family had concerns about her weight loss and because Home X had declined to plan for end of life care. The details from the referrer also said Home X’s manager had refused to allow the family to visit Mrs C as the manager did not feel the exceptional circumstances criteria had been met.
35. The Council completed a section 42 safeguarding in response to the referral. When investigating the safeguarding concerns the Council contacted an Advanced Nurse Practitioner (ANP) and a doctor from Mrs C’s medical practice. It also contacted the Manager of Home X.
36. The Council confirmed Mrs C’s conditions and prognosis and then decided its exceptional circumstances criteria was met. It then updated Mrs B so that she and other family members could visit Mrs C in line with what was agreed. It also updated the CQC.
37. Mrs B said the Council also agreed for the family to have telephone contact with staff at Home X on the days when family could not visit Mrs C. Mrs B said after a while Home X stopped answering the telephone calls and this caused the family concern for Mrs C’s wellbeing. She felt the manager of Home X was responsible for the situation.
38. Mrs B met with Council officers and the CQC near the end of January 2021 to discuss issues related to her mother’s care and support arrangements. Mrs B said Home X had not developed an end-of-life care plan and the family had concerns about the way Mrs C’s pain was being managed.
39. Mrs B said her mother’s health continued to deteriorate and experienced a fall at night when there was not enough staff working in the home. She said following a video call with her mother she had to ask Home X to call the emergency services for medical advice which they did.
40. The Council’s safeguarding investigation identified that Mrs C had fallen multiple times between 7 January 2020 to February 2021. She was assessed as being at high risk of falls. The Council said Home X had not kept the Falls Risk Assessment updated and Home X had not taken appropriate action quickly enough.

The involvement of the Trust’s Community Nursing Team

41. The Trust said its Community Nursing Team had discussed Mrs C’s conditions with the medical practice’s Frailty Team and its staff liaised with all partners involved in Mrs C’s care. It said care pathways were put in place in January including, referral to dietetics for nutritional support; skin check completed due to risk factors and end of life medications/prescriptions arranged and were in place.
42. The nursing record shows a nurse visited Mrs C on 15 January and reviewed her. The nursing record shows the visiting nurse felt Mrs C appeared stable as she was sat in the lounge and chatty. The nurse noted Mrs C did not appear confused and was settled.
43. The nurse also visited Mrs C the day after to administer pain relief. The nursing record states Mrs C was sitting with her family and said, ‘eating and drinking normally, 3 meals per day and spends most of her time in the dining room. Have spoken to the family who were present explaining that her observations are normal and appears to have a bit of a head cold’. The nurse noted that Mrs C had pain in her wrist and left instructions for the carers to administer medication.
44. On 18 January the Community Nursing Team received an urgent referral from Mrs C’s medical practice. The referral said, ‘Daughter visited over the weekend. Mum very unwell. Can you please assess all in place for her due to rapid deterioration. Today please as family very anxious.’ A nurse contacted the medical practice to discuss the referral as the nurse had seen Mrs C twice and felt she did not show signs of being end of life.
45. Mrs B said the manager from Home X telephoned her at the start of February and confirmed her mother’s health had deteriorated so family could now visit without any restrictions. Mrs B said she went to visit her mother and she said her mother was in pain, confused, restless and should not have been left unattended.
46. The district nurse attended on the same day Mrs B visited. Mrs C’s family wanted a syringe driver to be set up. The Trust said the nurse asked the family to leave the room to complete an assessment and examination with Mrs C. Mrs B later complained about the way the nurse had acted at this visit.
47. A nurse spoke to a senior care worker in early February and was told Mrs C had deteriorated over the last couple of weeks. The nursing records states ‘[Mrs C] often informs carers she has no pain she may be experiencing pain but not wanting to tell the carers. 5mg of [oral morphine] administered by senior carer this morning as family state she has she has experienced pain but [senior carer] states again appeared quite settled.’
48. The Community Nursing Team spoke to Mrs C’s medical practice that confirmed a doctor had visited Mrs C and because she was still sitting out and able to eat and drink small amounts the doctor suggested increasing the fentanyl patch (strong opioid painkiller used to treat severe pain – patches are for long lasting pain) rather than the STAT doses of medication (single immediate dose).
49. Two nurses from the Community Nursing Team visited Mrs C on 2 February because of her family’s request for a syringe driver. The nursing notes refer to Mrs C having ‘three doses of just in case medication over the past 24 hours’. The nurse noted a breakdown in trust and communication between Mrs C’s family and Home X. The nurse noted there had been misunderstanding about Mrs C’s end of life status. The nurse agreed to visit later the same evening to discuss the situation further with Mrs B and her family to try and improve the situation.
50. Later the same evening the nurse visited Home X and met with Mrs B and other family members. Mrs B explained the family were initially told Mrs C would not live until past the festive period and was now end of life status. Because of this the family wanted to be as active in Mrs C’s life as possible. Mrs B said she felt
    Home X thought the family were taking advantage of the situation when other residents did not have visits from their family members due to visiting restrictions because of the pandemic.
51. The nurse noted the family had been with Mrs C for the past 24 hours and this had impacted on the carers being able to provide formal care and support. The nurse explained that family members needed to vacate Mrs C’s room to allow carers to provide personal care. The nurse confirmed the doctor would be visiting the next day to increase pain medication. The nurse also said she would discuss fast track funding with the continuing healthcare department.
52. The records show the Trust completed a CHC fast track pathway tool on
    3 February 2021. The information on the form said Mrs C had ‘end stage dementia, and a suspected malignancy of bowel or lung. She has rapidly deteriorated over the last few days and had become increasingly frail with symptoms of pain and vomiting. She is now very agitated and suffering with delirium. She is resident in a residential home and because of her deterioration and frequent falls, cannot manage her symptoms especially at night and early evening. Her family have to sit with her as she cannot be left unattended.’
53. Mrs B remained concerned about her mother’s high risk of falls and that she could not be left unattended. The nurse recorded that Mrs C would have daily visit by the Community Nursing Team to assess her pain and nausea and make sure she was eating and drinking.
54. The Community Nursing Team spoke to Mrs C’s medical practice and set up a syringe driver from 3 February. The team also referred for night-time support for Mrs C due to her risk of falls. The records note Mrs C had had a restless night and had experienced agitation and delirium. Mrs C also had the fentanyl patch.
55. The nursing notes refer to a nurse discussing Mrs C’s being near the end of her life with her family who were present at the visit on 4 February. Later in the day Mrs C remained unsettled and appeared to be in some pain. The nursing notes refer to Mrs C coughing up thick sputum. The nurse recorded Mrs C as being more settled at the time of leaving.
56. Mrs C continued to be cared for her by her family as well as the Community Nursing Team and Home X. The nursing record refers to Mrs C trying to get out of bed and feeling more unsettled. Mrs C was unable to take oral medication at this point. The nurse showed Mrs C’s family how to clear secretions she experienced.
57. On 5 February Mrs B telephoned the Community Nursing Team stating that her mother was unsettled and in discomfort because of the pain. The nursing team visited and administered a stat dose of pain relief medication. She continued to have pain relief via the syringe driver. On leaving the nurse noted Mrs C was comfortable with her family by her side. Her family remained by her side until she passed away on 6 February 2021.

The Council’s second safeguarding investigation

58. In February, Mrs B raised complaints and further safeguarding concerns to the Council about her mother’s care in Home X. The Council arranged a safeguarding meeting with Mrs C’s family, a nurse from the Trust’s Community Nursing Team and three other Council officers.
59. The family felt Mrs C’s end of life treatment such as pain management and the introduction of pain relief was not managed appropriately. The family’s view was staff from Home X had influenced the view and clinical decisions made by the Community Nursing Team. Mrs C’s family also had concerns about the perceived lack of night-time support within Home X especially for their late mother who was at risk of falls.
60. From the initial enquiry the Council progressed to a Section 42 Enquiry. When doing so it reviewed Mrs C’s end of life care plan, case logs, medication sheets, falls risk assessments and the number of night-time staff in Home X. It also sought information from the Community Nursing Team.
61. Alongside the safeguarding enquiry the Council completed an investigation in line with its human resources procedures. It said it took necessary action within
    Home X in line with its performance policies and procedures.
62. The Council’s safeguarding investigation substantiated some of the concerns raised by the family. It substantiated the allegation of the lack of night-time staff on duty and identified errors in the management of falls risk and medication assessments. However, it said Mrs C was not neglected and did not suffer harm because of the care provided by Home X.
63. The Council said it took appropriate action under its Human Resources procedures following the outcome of the safeguarding investigation. It also implemented a formal improvement plan with actions for its Service Manager to implement. The Council acknowledged there were several incidents where the care and treatment Mrs C received fell below expected standards.
64. The Council completed a review of its safeguarding process when the criteria for a formal Safeguarding Adults Review (SAR) was not met. This was because the family remain dissatisfied with the outcome. A Safeguarding Manager who was not previously involved with Mrs C’s case completed the review. The officer did not find evidence to suggest the Council failed to follow its safeguarding policy and procedures properly.

Findings

Care and support provided by the Council and the Trust to Mrs C

65. From the evidence available it is evident Mrs C’s family played an active role in her care and support arrangements even before she became a resident in
    Home X. It is important to note that national government guidance on care home visiting was in place during the period complained about.
66. Mrs C had a deteriorating condition and had entered a terminal phase so was considered end of life. The evidence available supports the view Mrs C was at the end of her life from at least the last quarter of 2020. People who are approaching the end of their life are entitled to high-quality care and it is evident Mrs C’s family had this expectation. They reasonably expected the care and support provided by the Council and the Trust to meet high standards. They wanted to spend as much time with their mother as they could when it was anticipated she would not live beyond months.
67. The Council acted to communicate with Mrs C’s medical practice about the NHS fast track pathway tool for continuing healthcare funding. The medical practice told the Council the district nurses would have to complete the fast track pathway tool. The medical practice sent a referral to the Trust in November 2020 asking it to complete the fast track pathway tool urgently. There is evidence to show the Council tried to follow up with the Trust about fast track funding as it contacted the Trust again in December 2020 about the referral. This is good practice.
68. When the member of the Community Nursing Team went to visit Mrs C in early December they did not complete the NHS fast track funding tool or any other formal recorded assessment to show what they had considered to arrive at the decision to discharge from their caseload. The Trust said its Community Nursing Team did not consider that Mrs C was rapidly deteriorating and approaching the end of life.
69. The National Framework says, ‘…an individual may currently be demonstrating few symptoms yet the nature of the condition is such that it is clear that rapid deterioration is to be expected in the near future. In order to avoid the need for unnecessary or repeat assessments it may therefore be appropriate to use the Fast Track Pathway Tool now in anticipation of those needs arising and agreeing the responsibilities and actions to be taken once they arise, or to plan an early review date to reconsider the situation’.
70. The Community Nursing Team only considered Mrs C’s presentation on the day of the visit. There is no evidence to show how the Community Nursing Team considered the likely progression of Mrs C’s condition, including anticipated deterioration and how and when this would occur.
71. Mrs C’s medical practice had made the referral and there is no indication the Community Nursing Team contacted Mrs C’s general practitioner (GP) to obtain further information about Mrs C’s condition and prognosis when deciding she was not eligible for healthcare funding. This is fault. It is likely Mrs C missed the opportunity to have her health needs considered further by her GP who could have decided to complete the fast track funding tool when the Community Nursing Team did not. Mrs B is caused to experience uncertainty about healthcare funding for her mother’s health needs and the adequacy of the end of life care she received.
72. The nursing record shows Home X had contacted the Community Nursing Team about equipment and tissue viability issues in late 2020. The records suggest there was some delay by the Trust providing the required equipment such as a pressure cushion.
73. The Council’s investigation established Mrs C had fallen multiple times without appropriate action being taken in time. Home X did not update the falls risk assessment. This is fault by the Council which is likely to have put Mrs C at more risk of falls.
74. The Council should have reviewed Mrs C’s needs and the care support plan Home X had in place. I have not seen evidence to show the Council and Home X properly considered Mrs C’s prognosis and the changes in her care needs when she returned from hospital and after she had fallen several times in Home X. This is fault.
75. Mrs B said the care her mother received from the home was sub-standard for about 12 months. She confirmed her mother paid £2350 every 28 days for care fees. I have not seen documentary to show Mrs C received poor care for 12 months.
76. Mrs B said her mother paid the full cost of fees to the Council and she was not provided with the standard of service she should have reasonably expected. The Council accepted that Mrs C’s care and treatment had fallen below the level of standard it expected as a council registered care home provider. This is fault by the Council, and this caused injustice to Mrs C as at times she did not receive the service she paid for. Although Mrs C had now died the loss to her estate should be acknowledged and remedied.
77. The Council’s safeguarding investigation also identified its care home had insufficient staff in place at night on at least three occasions. This is fault. The Council took action to put this right following its management review and followed its human resources procedures when dealing with its staff.
78. Nevertheless, Mrs B and other family members felt the need to provide more care than they should have expected to as there was insufficient support in place for Mrs C during the night-time and she remained at high risk of falls. This is likely to have caused them avoidable distress, worry and inconvenience.
79. The National Framework says, ‘Care planning and commissioning for those with end of life needs should be carried out in an integrated manner, as part of the individual’s end of life care pathway and taking into account individual preferences.' I have not seen evidence to show the Trust’s Community Nursing Team worked together with the Council’s care home to have a coordinated end of life care plan in place which properly considered Mrs C’s and her family’s wishes. This is fault by the Trust.
80. The information the Trust used to eventually complete the fast track pathway tool was information it was aware of from at least November 2020 when it received the referral from the medical practice. It requested night-time support noting that Mrs C was at risk of falls. Mrs C would have benefited from this support months earlier. Mrs C family did stay with her at night which is likely to have increased their carers strain.
81. The National Framework says the fast track pathway tool ‘should be completed even if an individual is already receiving a care package which could still meet their needs. This is important because the individual may at present be funding their own care or the local authority may be funding (and/or charging) when the NHS should now be funding the care in full.’
82. Completion of the fast track pathway tool would have helped to determine Mrs C’s entitlement to healthcare funding sooner. I cannot say whether Mrs C would have met the criteria but the evidence shows she had a confirmed condition and a confirmed prognosis.
83. The fault by the Trust leaves doubt about whether Mrs C’s care in Home X should have been funded by the NHS from an earlier period before she died. This is likely to cause Mrs B and her family uncertainty about the amount Mrs C paid for care fees from the date of her prognosis. It is likely they also experienced uncertainty and worry about their mother’s care because of the delay.

The Council’s care home’s acceptance of Mrs C’s clinical diagnosis and visiting

84. Mrs B said staff from Home X influenced the actions of the Community Nursing Team. I have not seen evidence to support this view. The evidence shows the Community Nursing Team tried to manage the relationship between Home X and Mrs C’s family. It arranged a meeting to discuss matters when it was clear the relationship between Mrs C’s family and Home X was strained. This is good practice.
85. Mrs C’s medical practice referred to her as being end of life based on her conditions and prognosis when it sent the referral to the Trust in November 2020. Despite this the evidence available shows a nurse contacted the medical practice in January 2021 as they felt Mrs C did not show signs of being end of life.
86. The evidence available suggests there was some confusion about the term end of life when the Trust’s nurse communicated with the medical practice. The evidence available confirms Mrs C was at the end of her life and the language used by the nurse leads to a view there was doubt about this. But it is likely the nurse was suggesting that in her clinical view Mrs C was not showing signs of dying in the next few hours or days.
87. I have not seen evidence to suggest Home X influenced the view of nurses but the evidence shows a lack of mistrust between Home X and Mrs C’s family. The Community Nursing Team tried to help this situation. Therefore, I do not find the Trust at fault regarding this part of the complaint.
88. Mrs C’s family should have received support and information to help them better understand end of life care. The National Institute for Health and Care Excellence says, ‘During the course of the illness, the patient’s needs as well as the needs of their family or carers, should be assessed (and managed) at key points (such as at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching)’.
89. If the Trust had actioned the referral for CHC fast track funding sooner, it is more likely than not its Community Nursing Team could have gone to visit Mrs C sooner to assess her. This may have helped to provide clarity around the end of life definition and ensure a suitable end of care plan pathway was in place. This would have provided Mrs C and her family with more choice about how her end of life care needs should have been met.
90. The evidence available suggests the manager at Home X had concerns about deviating from the government guidance care homes had to follow about allowing visits during the pandemic. It is likely the manager was trying to keep the home free from Covid-19. The policy the Council had in place for care home visits allowed Home X’s manager to arrange visits for family members in exceptional circumstances. Mrs C’s medical practice had deemed her to be at the end of life and Home X should have acted on this information from November 2020.
91. Following Mrs C’s complaint to the CQC the Council acted quickly to investigate the concerns under its safeguarding procedures. The Council said Home X’s manager should have considered the visits to be under exceptional circumstances. In this case the Council acted to put things right as soon as possible and arranged exceptional circumstances visits from the beginning of December. While it may appear there was a short delay the Council would have needed some time to investigate the concerns. Therefore, I cannot say it is at fault.

The Trust’s timing of the use of syringe driver for Mrs C

92. The evidence available suggests the Community Nursing Team had a key role in Mrs C’s pain management from the outset. I can appreciate that Mrs C’s family must have found it difficult to see her in pain.
93. The overall management of pain is very much a multi-disciplinary activity, involving medical, nursing and allied healthcare professionals. The records available support the view that the community nurses had good communication With Mrs C’s medical practice when necessary about medication and Mrs C’s needs. The community nurses also spoke to carers at Home X and Mrs C’s family. This is evidence of good practice.
94. The Community Nursing Team completed a patient assessment so they could administer medication in line with Mrs C’s needs. They also put a plan in place to visit Mrs C daily when it became clear this was necessary.
95. The timing of the use of the syringe driver was discussed with Mrs C’s doctor and the community nurses supporting her. Doctors from the medical practice had also visited Mrs C during the last week of her life and were able to assess her pain and to decide when to use the syringe driver.
96. The community nurses had a frailty meeting with the medical practice at the start of February 2021 and so there was good discussion about end of life medication for Mrs C. I have not seen evidence of fault in the way the Trust made decisions about Mrs C’s end of life medication and the use of the syringe driver.

The Council’s advice on giving gifts from Mrs C’s funds

97. The Council completed a financial assessment to decide how much Mrs C needed to pay towards her care fees. Once Mrs C had sold her property it provided further advice to her son who acted as her attorney for health and welfare.
98. People in a care home will contribute most of their income, excluding their earnings, towards the cost of their care and support. However, a council must leave the person with a specified amount of their own income so that the person has money to spend on personal items such as clothes and other items that are not part of their care. This is known as the personal expenses allowance (PEA).
99. The Council sent Mrs C’s son a list of allowances it would make from Mrs C’s capital after considering information he had provided to it. It also explained the amount Mrs C could spend as her PEA.
100. Mrs C’s son told the Council his mother had 20 grandchildren/great grandchildren. He explained his mother had always gifts for them for birthdays and at Christmas. Mrs C’s son said he was challenging the Council’s decision.
101. In response the Council said, it had further considered Mrs C’s finances and agreed to an additional allowance for other expenditure such as paying for Mrs C to have trips away from the care home. The Council said it could make an allowance to considering Mrs C’s practice of buying gifts for her relatives. It asked Mrs C’s son to provide evidence such as bank statement so it could verify the amount she had historically gifted.
102. The Council acted in line with its policy and made allowances when provided with the information it needed to make its decision. I have not seen evidence of it providing poor financial advice or a lack of information. I do not find the Council at fault regarding this part of the complaint.

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Agreed Recommendations

103. Within one month of our final decision, the authorities complained about will take the following action:
• the Council will apologise in writing to Mrs B and her siblings for the worry and avoidable distress caused by its failure to review her mother’s care needs when she was at the end of her life. It will also apologise for the poor care it acknowledged she received at times
• the Council will reimburse £2350 to Mrs C’s estate which she paid for care fees in recognition the care she paid for fell below expected standards at times. The Council should make the payment to Mrs B who will deal with it accordingly.
• the Trust will apologise in writing to Mrs B and her siblings for the uncertainty and worry they experienced caused by its failure to properly consider Mrs C’s condition and prognosis when it considered her presentation and decided she did not meet the criteria for fast track healthcare funding. It will also apologise for the uncertainty they experience because of its failure to communicate with their mother’s GP practice after it acted on the referral made.
• the Council and the Trust will each pay Mrs B £500 to acknowledge the impact the faults had on her and her siblings at a time when their mother was at the end of her life.
104. Within two months of the final decision:
• the Trust will liaise with Mrs B and the relevant ICB (formerly CCG) and arrange for the ICB to consider a retrospective assessment of Mrs C’s entitlement to continuing healthcare funding from the date in November 2020 when it received the urgent referral from her medical practice.
• the Trust will remind its officers of the importance of fully considering information in referrals for healthcare funding assessments and importance of communicating with other clinicians or professionals who have made the referral. It will consider whether any training is necessary for its staff particularly around consideration of healthcare funding in end of life cases. It will tell the Ombudsmen when it has done this and provide evidence.
• the Council and the Trust will remind their officers of the importance of care plan reviews and working together to coordinate end of life care plans in an individual personalised way. They will tell the Ombudsmen when they have done this and provide evidence.

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Final decision

105. I have found faults by the Council and the Trust as set out in this decision statement. The Council and the Trust have agreed to our recommendations so, I have completed the investigation and closed the complaint.

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Investigator's decision on behalf of the Ombudsman