Complaint about the GP Practice
30. Mr G’s family complained their dad’s GP consultations in 2020 were by telephone rather than in person and this led to the GPs focussing on Mr G’s individual symptoms rather than holistically considering their increasing number and severity. They believed this caused a delay in the GPs identifying Mr G’s persistent cough, infections and weight loss as possible cancer symptoms.
31. We have considered the GP Practice’s actions in 2020. We have found the GP Practice acted appropriately.
32. Mr G contacted his GP Practice on 30 January 2020 reporting flu symptoms since before Christmas, blocked sinuses, a constant cough and possibly coughing up blood on one occasion. The GP saw Mr G the same day. They examined Mr G and found his heart rate was raised and crackles in the base of the right lung. Mr G’s temperature and oxygen levels were normal. The GP prescribed amoxycillin for a lower respiratory tract infection. This action was in line with NICE Clinical Knowledge Summary, which said this was the appropriate course of treatment.
33. As Mr G was an ex-smoker (25 years), the GP also requested a chest X-ray. Having taken clinical advice from a GP adviser, and taken account of the evidence showing Mr G’s GP ordered an urgent chest X-ray, we consider the GP surgery acted in line with NICE guidance 12 ‘Suspected cancer: recognition and referral’. This says that patients should be offered an urgent chest X-ray (to be done within 2 weeks) to assess for lung cancer in people aged 40 and over if they have ever smoked and have at least one of the following unexplained symptoms: cough, fatigue, shortness of breath, chest pain, weight loss, appetite loss.
34. For the reasons above, we consider the GP adequately assessed Mr G during the faceto-face consultation and arranged suitable investigations. The care was in line with Good Medical Practice, which says doctors should ‘adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient; and promptly provide or arrange suitable advice, investigations or treatment where necessary’.
35. Mr G’s chest X-ray was done on 14 February 2020. It showed there was ill-defined shadowing at the base of the right lung – possibly an infection. The reporting radiologist recommended the X-ray be repeated in six to eight weeks after treatment.
36. The GP requested the repeat X-ray and texted Mr G to remind him to attend the Xray department. This was in line with BMA guidance which said the ‘ordering clinician is responsible for receiving and acting upon results’. Mr G did not attend for the follow up X-ray because he ‘felt quite well then and wanted to isolate as much as possible’. On 7 April 2020, the GP Practice contacted Mr G again about having a repeat chest X-ray.
37. On 17 May 2020 Mr G contacted the GP Practice via ‘econsult’ (an online consultation platform that sends patients’ medical and administrative requests through to their GP practice to look at and decide on the right care). He reported he was suffering with a sore throat.
38. Mr G said he had had a fever the week before and was feeling tired, but his Covid test was negative. He had a slightly sore mouth and a nasty taste - the appearance of his mouth suggested oral thrush (a fungal infection). A GP did a telephone consultation with Mr G the next day. They agreed to treat Mr G with anti-fungal medication based on the history he had given to avoid the need for him to come to the surgery.
39. We asked our GP adviser if it had been appropriate for the GP to review Mr G by a telephone consultation. The GP adviser explained the ‘total triage’ model of care means that a patient contacting their GP practice is first asked for information on why they are contacting the practice. Practice staff then triage the request to decide on the most appropriate mode of care delivery (online, telephone, video, face-to-face) so that care is provided by the right healthcare professional with the right level of urgency. This helps to avoid footfall in practices and protects patients and staff from the risk of infection (NHS England advice Coronavirus » Advice on how to establish a remote ‘total triage’ model in general practice using online consultations (england.nhs.uk)).
40. NHS England advice on the ‘total triage’ model says ‘Practices should continue to provide remote consultations (online, phone, video) alongside face-to-face care for those that need it. The approach should be tailored to the person, the circumstance and their needs.’
41. We found the GP Practice’s assessment of Mr G and decision to treat without a face-to-face appointment was appropriate. The risks of a face-to-face appointment generally outweighed the benefits during the early stage of the Covid-19 pandemic.
42. On 26 May 2020, Mr G reported to the GP Practice he was suffering with nausea. Mr G said he had been feeling sick and tired after the course of anti-fungal medication (fluconazole). The history taken by the GP included: ‘Mr G thinks he has had all side effects of fluconazole… poor oral intake… no pain… more constipated, weight loss due to reduced intake, [passing urine] ok’.
43. Mr G gave his blood pressure, pulse and oxygen saturation level readings to the GP, these were normal. The GP asked Mr G to increase his eating and drinking and to call back if the issues continued after 24 hours.
44. We found that consultation was suitable for a telephone appointment as the risks of a face-to-face appointment outweighed the benefits and the GP had safety-netted Mr G - to call back should he not improve. Again, we found the GP Practice’s actions were in keeping with the NHS England ‘total triage’ model.
45. Up to this point, Mr G had not presented to the GP Practice with symptoms that should have raised suspicion of urological cancer. This changed from 31 May 2020.
46. Mr G sent the GP Practice an ‘econsult’ on Sunday 31 May 2020 reporting blood in his urine, increase in frequency of passing urine and abdominal pain. A GP telephoned him the following day on 1 June. Mr G said his abdominal discomfort had settled but suspected, from past experience, he had a urine infection as he was passing urine more frequently. He said he felt well in himself and did not have loin pain (an indication of kidney infection). The GP asked Mr G to provide a urine sample for testing and to start a course of antibiotics in the meantime. The GP texted Mr G to explain if his urine test results did not show an infection, he would need further tests.
47. NHS England’s total triage model guidance said GP practices ‘should continue to provide remote consultations (online, phone, video) alongside face to face care for those that need it. The approach should be tailored to the person, the circumstance and their needs’. Our GP adviser said a face-to-face consultation on 1 June would have been of no additional benefit, as it would not have made a difference to Mr G’s management at that stage. The most important thing was to find out if Mr G had a urinary tract infection – the GP did not need to see Mr G in person to arrange the appropriate urine test. In this respect the GP was acting in line with NHS England advice to protect patients and staff from avoidable risks of infection from face-to-face consultations.
48. Mr G’s urine test results came back on Thursday 4 June 2020. The urine contained blood, some white cells but no protein or nitrates which made it unlikely he had a urinary tract infection.
49. The GP telephoned Mr G on Monday 8 June 2020. Mr G said he had been feeling ill, had poor appetite, lost a stone in weight, had poor urinary flow and had been feeling sick and tired for the past four weeks. The GP asked Mr G to come into the GP Practice that afternoon, which he did.
50. During the face-to-face consultation on 8 June 2020, the GP noted Mr G’s observations (temperature, oxygen saturations and blood pressure) were normal. His abdomen was soft and non-tender but found his prostate had a possible firmness, so the GP organised a blood test to check for prostate cancer (prostate specific antigen test – PSA). The GP explained to Mr G he needed a suspect cancer two week wait referral to see a urologist.
51. That action was in line with NICE guidance for referral of men with a lower urinary tract infection which says men should be referred to urology who have ongoing symptoms of a urinary tract infection despite antibiotic treatment. If a urinary tract infection (UTI) is not proven, then men who have passed blood should be urgently referred using a suspected cancer pathway referral for an appointment within two weeks for men:
• Aged 45 years and over who have unexplained visible haematuria without UTI, or visible haematuria that persists or recurs after successful treatment of UTI.
• Aged 60 years and over who have unexplained non-visible haematuria and either dysuria or a raised white cell count on a blood test.
52. The GP told Mr G they should wait for the prostate cancer blood test results first, to decide whether the referral should be to the prostate clinic or kidney/bladder clinic. The GP also prescribed a broader spectrum antibiotic for Mr G to cover possible urinary tract and chest infections.
53. We found the GP Practice’s decision to see Mr G face-to-face on 8 June 2020 was in line with Good Medical Practice. This says doctors should ‘promptly provide or arrange suitable advice, investigations or treatment where necessary refer a patient to another practitioner when this serves the patient’s needs.’
54. The GP Practice received Mr G’s PSA test result on 19 June 2020 – it was normal. As Mr G’s urine test results had shown visible blood in the urine the GP made a suspected urological cancer referral to his local NHS Trust. The GP Practice texted Mr G to confirm this.
55. Mr G contacted the GP Practice on 23 June 2020 explaining he was still coughing and said he would now like his repeat chest X-ray. The GP Practice submitted an X-ray request for him.
56. Mr G had his X-ray on 26 June 2020. The GP Practice received the X-ray report later the same day. It said ‘The right lower zone has cleared. There is little residual peribronchial opacity in both lower zones which look inflammatory. No pleural effusions. Normal sized heart.’ Our GP adviser said this showed the infection Mr G had in February had cleared up with some ‘scarring’ and there was no lung cancer.
57. We have seen no delay in the GP Practice identifying the cause of Mr G’s persistent cough and providing appropriate treatment.
58. Our GP adviser said once Mr G’s prostate cancer blood tests results came back as normal, the GP Practice referred Mr G in a timely way to the urologists for bladder/kidney investigations.
59. We have carefully considered if the GP Practice took the right actions in response to Mr G’s symptoms during 2020 and if the telephone consultations should have been face-to-face. For the reasons given above, it was appropriate for the consultations on 18 May, 26 May, 1 June and 8 June 2020 to be by telephone. Following the telephone triage on 8 June the GP decided they needed to see Mr G face-to-face. It was appropriate that this face-to-face consultation happened the same day.
60. The evidence shows us the GP Practice ordered suitable tests when they should have done, in line with relevant guidance, to find the cause of Mr G’s symptoms. The GPs also prescribed antibiotics appropriately. We have found no indication the telephone consultations caused any delay in the process of diagnosing Mr G. Considering this, we have not upheld the complaint about the GP Practice.
61. We can see Mr G’s family remain very distressed by what they have told us were failings in their dad’s GP care. We hope our explanations reassure them the telephone consultations that happened were appropriate and the GP Practice saw Mr G in person when it should have done.
Complaint about the Trust
62. Mr G’s family complained the Trust failed to refer Mr G to Macmillan nurses in their local area when they should have done – after his initial appointment with the consultant oncologist in September 2020.
63. The family said they had no support to help manage their dad at home during his chemotherapy treatment. It was only two months later, after a neighbour told them about Macmillan nurses, that they got a community palliative care nurse, who then arranged financial support (attendance allowance) and input from occupational therapy (toilet risers, special pillows, mattress topper, and stairlift).
64. The relevant standards for what the Trust should have done is set out in NICE guideline NG2 ‘Bladder cancer: diagnosis and management’. On ‘information and support’ it says:
• ‘1.1.1 Offer clinical nurse specialist support to adults with bladder cancer and give them the clinical nurse specialist's contact details.’
• ‘1.1.2 Ensure that the clinical nurse specialist acts as the key worker to address the person's information and care needs’ • ‘1.1.3 Use a holistic needs assessment to identify an individualised package of information and support for adults with bladder cancer and, if they wish, their partners, families or carers, at key points in their care such as: • when they are first diagnosed • after they have had their first treatment’
65. On ‘Specialist palliative care for adults with incurable bladder cancer’, NICE guideline NG2 says:
• ‘1.8.5 Discuss palliative care services with adults with incurable bladder cancer and, if needed and they agree, refer them to a specialist palliative care team (for more information, see recommendation 1.1.3 on holistic needs assessment in the section on information and support, and NICE's guidelines on improving supportive and palliative care for adults with cancer and improving outcomes in urological cancers).’
66. A Trust consultant oncologist discussed the diagnosis and management options with Mr G on 16 September 2020. This included the options of community-based palliative care or palliative chemotherapy provided by the Trust. The oncologist recorded that Mr G decided to have palliative chemotherapy treatment (that is, aimed at improving the quality of life rather than attempting to cure the disease). The oncologist said, ‘he has written information and a consent form’. The signed consent form shows this information was about the chemotherapy treatment.
67. The Trust publishes a patient information factsheet ‘Macmillan urology cancer clinical nurse specialist team’. This explains the support available from the Trust’s clinical nurse specialists and their contact details. We do not know if the Trust had published this factsheet at the time of the events in this case or, if it was, that the Trust gave Mr G a copy.
68. Mr G’s family called the Trust’s oncology emergency phone number because they were concerned their dad was suffering with a nosebleed. Sometime later, a Trust clinical nurse specialist from its ‘Macmillan acute oncology service’ called them back.
69. During the call on 5 October 2020 the nurse completed a telephone assessment. This included that Mr G was ‘performing [activities of daily living]’. This suggests that the Trust assessed whether Mr G was able to carry out his basic needs of eating, bathing, dressing, toileting, and moving around. The nurse suspected that Mr G could be suffering from low blood platelets and advised he to come into hospital for review. He did that.
70. Mr G went to the GP Practice on 7 October 2020 suffering with a pressure ulcer. The GP recorded they ‘had a long discussion with patient and daughter about a plan for supplements, palliative care’. The GP did a cancer care review, provided a ‘supportive chat’, and made a palliative care referral to the community-based Macmillan nurses to discuss symptom control.
71. The GP’s records recorded on 12 October 2020 that Mr G was ‘under the care of community palliative care team’.
72. A Trust advanced nurse practitioner carried out a chemotherapy assessment with Mr G on 4 and 11 November 2020. The Trust’s note of the latter assessment includes that Mr G had seen the community Macmillan nurse yesterday, and that Mr G:
‘would like to remain at home and doesn’t feel he needs to come into hospital for review presently. He feels supported and well enough to be in his own home’.
73. Those events show that from 5 October 2020 the Trust’s own Macmillan nurses provided Mr G with the information and support required by NICE guideline NG2. We can also see that Mr G was under the care of community Macmillan palliative care nurses from 12 October 2020. As a result, we have found the Trust acted appropriately and we have not upheld this complaint.
Complaint about the Hospice
Issue 1 - visiting 74. Mr G’s family complained the Hospice severely restricted visiting time to two people for up to one hour a day. They said the Hospice admitted Mr G for end-of-life care, not symptom control as the Hospice claims, and this meant the Hospice should have allowed four people to visit at the same time.
75. Mr G’s family said the Hospice’s actions to restrict visiting caused them significant distress, suffering and sadness because they believed that their dad was about to reach the end of his life. They gave the example of 19 December 2020 when three of Mr G’s children tried to visit Mr G, knowing their dad was at the end of his life. Hospice staff insisted one of the three had to leave – and they were afraid that the one who had to leave would never see Mr G again.
76. If the Hospice had extended visiting, they could have all seen Mr G together. Mr G’s daughter said: ‘It still impacts us all greatly that we missed vital time with our Dad, and that someone made the decision and thought it was acceptable to do this. We were only allowed to see him in pairs for a very limited amount of time every other day, which is completely unfair and caused (and causes) so much sadness to us’.
77. On 13 October 2020, NHS England revised its guidance (NHS England: Visiting healthcare inpatient settings during the COVID-19 pandemic: principles) on how NHS organisations might choose to facilitate visiting across healthcare inpatient, outpatient and diagnostic service settings during the Covid-19 pandemic. The guidance included that visiting was subject to local discretion by NHS trusts and other NHS bodies and would take the local prevalence of Covid-19 into account. It limited the number of visitors to one close family contact or somebody important to the patient. However, where social distancing could be maintained throughout a visit, and where specific needs had been agreed with the clinical team, the guidance permitted up to four visitors.
78. There was no specific guidance for visiting in hospices in 2020 - NHS England published guidelines for visiting healthcare inpatient settings - and hospices followed this. This guidance included that visiting should be accommodated for at least one hour per day - this was general visiting and not specifically for patients on end-of-life care. While one hour was the recommended minimum, it was encouraged that visiting should happen for longer if possible.
79. NHS England’s October 2020 visiting guidance said, with regard to patients thought to be in the last week of life, organisations should take a compassionate approach, balancing the importance of close family members being able to spend time with the dying person with the need to manage infection risk. The guidance said organisations should use their own riskbased assessment to decide to what extent more relaxed visiting arrangements could be facilitated.
80. The Hospice, in its response to the family’s complaint wrote:
‘In accordance with national guidance [in relation to the Covid-19 pandemic] at the time, there was a restriction in place which did not permit visiting during December 2020 with exceptions to this guidance particularly around end of life or in extreme circumstances.
These exceptions were assessed on an individual basis and arrangements for the hospice discussed with patients and families … In recognition that your father was admitted for symptom control and not end of life care, he and family were informed that if sensible precautions were followed, the team at the hospice would be able to support one visit a day for up to two people for one hour … On occasion, if an additional visit could be facilitated due to either family or patient distress then of course the team would try and accommodate this, however this would have been the exception rather than the rule, except in delivering end of life care.’
81. We appreciate this would have been a very upsetting time for Mr G and his family – he was very unwell, receiving vital care and treatment, at a time when there were infection prevention arrangements in place for NHS facilities in relation to the Covid-19 pandemic. We have considered how the Hospice approached Mr G having visitors. In particular, whether the evidence indicated Mr G was in the last week of his life or Mr G or his family were distressed.
82. Mr G’s GP conducted a home visit on 10 December 2020 in response to his family witnessing that he was more unwell. The GP’s notes include:
‘Living with son and daughter who are struggling to manage. Getting stairlift in [one week]. House looks quite cluttered. I think if stays in bed will quickly get pressure areas. I think needs admission [to the Hospice] for bloods. ? benefit drainage ascites. Need to sort things at home so suitable to manage [end of life care] - otherwise Nursing Home. [The Hospice has] bed available. Waiting callback from Palliative Care Nurse’
83. That GP record shows symptom control was the reason for Mr G’s admission. It does not suggest that the GP thought Mr G was in the last week of his life.
84. The Hospice’s admission notes gave the reason for admission as ‘not coping at home with care needs and feels weaker’. Those notes included this discussion with Mr G about what he thought was happening: ‘[Mr G] was unsure, he acknowledged that he thought he was ill this morning and his daughter acknowledged that she thought he was dying’.
85. Under ‘patient and family expectations of hospice stay’, the admission notes said:
‘Expects that his hospice admission will help him feel brighter and less weak and then would like to go home once he feels better.’
86. That evidence from the GP’s records and the Hospice’s admission notes shows us the Hospice admitted Mr G for symptom control. They did not appear to think that Mr G was in the last week of his life. Mr G’s family thought he was close to dying at that time.
87. That evidence shows the Hospice admitted Mr G for symptom control and it was aware Mr G thought the admission would help him feel better before returning home. From this, we can see no error in the Hospice’s understanding of the reasons for Mr G’s admission.
88. It was reasonable for the Hospice to consider Mr G was not in the last week of his life. As a result, the Hospice’s decision to limit visiting to two people for one hour per day was in line with NHS England’s October 2020 visiting guidance.
89. Mr G was more unwell around 15 December 2020 as he needed a blood transfusion. Mr G told his daughter that ‘he hasn’t got long left to live’. He was transferred to hospital and received two of three planned blood transfusions.
90. A palliative care doctor at the Hospice reviewed Mr G on 16 December 2020. They discussed Mr G’s situation with him and recorded:
‘[Mr G] has had varying assessment of prognosis recently but aware outlook is poor. Thought he might die today… Agreed with his overall assessment – prognosis is poor, he likely has a short time to live but [the blood transfusion] has probably extended that a little.’
91. On 17 December 2020 one of Mr G’s sons and his daughter visited. The Hospice’s records include: ‘Visiting clarified with the family – at present two visitors once a day. Although [Mr G] is unwell he is not imminently dying’. The view that Mr G was not imminently dying is in line with the palliative care doctor’s assessment the previous day.
92. The Hospice recorded on 17 and 19 December 2020 that Mr G reported he felt better after having the blood transfusion.
93. Two of Mr G’s sons and his daughter came to the Hospice on 19 December 2020. The Hospice said that only two of them could visit their dad. The Hospice recorded that Mr G’s daughter was:
‘distressed by this and that all three of them couldn’t visit at the same time, she then left the hospice quite disgruntled, I have tried to call her this evening to explain the visiting situation but no answer, I will try again later or tomorrow.’
94. Mr G’s daughter said there was no record of the Hospice trying to call her.
95. Mr G’s perception of his situation had improved on 20 December 2020. He told the Hospice he ‘would like to stay at [the Hospice] for Christmas but realises this isn’t a long-term option, and then said he would like to consider residential care’. This shows us Mr G thought he was not in the last week of his life at this time.
96. The Hospice discussed the visiting arrangements with Mr G, a son, and daughter on 21 December. It maintained its decision to limit visits to two people once by day.
97. Mr G’s condition remained stable up to being discharged from the Hospice on 31 December2020. His prognosis did not worsen.
98. Those circumstances described above largely support the Hospice’s decision to leave the visiting arrangements unchanged until he was discharged on 31 December 2020. However, the Hospice was aware on 19 December that the arrangements had caused the family distress on that occasion.
99. The Hospice’s complaints response had said it would consider whether it could facilitate additional visiting in response to family or patient distress. There is no record of the Hospice reconsidering the visiting arrangements on 19 December 2020 in response to Mr G’s daughter’s distress at being unable to visit her father with her brothers. The Hospice said it attempted to speak with Mr G’s daughter, but she disputes this.
100. The Hospice followed up on this incident two days later by discussing the visiting arrangements with Mr G, a son and daughter. The Hospice decided to maintain the visiting arrangements at two people per day.
101. On and after 19 December 2020, the Hospice notes show that its doctors and Mr G thought he was not in the last week of his life. They expected him to stay at the Hospice beyond Christmas and then be discharged to a nursing home or to his home. Given this, and in the absence of any further events when Mr G or his family were distressed by the visiting arrangements, we have found the Hospice acted appropriately in line with October 2020 NHS England visiting guidance. As a result, we have not upheld this issue of complaint.
Issue 2 - interruptions 102. Mr G’s family complained Hospice staff constantly interrupted the limited amount of visiting time they did have with Mr G.
103. The Nursing Code includes ‘1.1 treat people with kindness, respect and compassion’ and ‘1.2 make sure you deliver the fundamentals of care effectively’.
104. In its response to the complaint about this, the Hospice wrote ‘Unfortunately, clinical care sometimes necessitates the need for interruptions.’ The clinical notes do not identify Mr G’s family visits were interrupted or that the family were concerned they were excessive, and possibly unnecessary, interruptions.
105. We accept that while there is no record of staff interrupting family visits to provide care for Mr G, this would not necessarily have been recorded. Mr G’s family were clear there were interruptions, and they found this distressing. We recognise also that any interruptions were likely to have more of an impact in December 2020, due to the Covid-19 visiting restrictions, so having the minimal time available to visit loved ones cut short would have been distressing to the families of patients.
106. Nursing staff had to balance treating Mr G with kindness, respect and compassion (in line with the Nursing Code) – allowing him time alone with his family – against delivering the fundamentals of care effectively. Given the evidence of interruptions from Mr G’s family and the Hospice’s acknowledgement, we consider interruptions were likely to have occurred.
107. We recognise these interruptions were very upsetting for Mr G’s family, who were restricted in the time they could spend with Mr G. As we have been unable to fully establish the nature of the interruptions, we are unable to make a finding as to whether the level of interruption was warranted or not.
Issue 3 – persuaded Mr G into going to a care home 108. Mr G’s family complained Hospice staff persuaded Mr G to be discharged to a care home, rather than his own home. We appreciate this was a tough time for the family, trying to support and plan for Mr G when he was very unwell.
109. Mr G’s family said the failure of Hospice staff to consider all discharge options for Mr G and to involve the family caused them great distress. They said if the family had been aware of the extremely limited visiting allowed by the Care Home, they would have arranged for Mr G to be discharged home instead, so they could spend as much time as possible with him. Mr G’s family added that after a few days in the Care Home the family were not allowed to visit at all because of additional national restrictions – which added greatly to their distress.
110. NICE 2015 guideline 27 (‘Transition between inpatient hospital settings and community or care home settings for adults with social care needs’) supports that everyone receiving care should be seen as an individual and an equal partner who can make choices about their own care and that families and carers should be involved (with patient consent) in discussions about the care being given or proposed.
111. We have looked at what the GP, Hospice, and Hospital records said about Mr G’s preference for the location of his care and how the Hospice engaged with him about this.
• 10/12/2020 – Mr G preferred for his end-of-life care to be managed at home • 11/12/2020 – Mr G preferred to be at home but would consider hospice admission if his family is not able to manage him at home • 15/12/2020 – ‘where possible for end-of-life care at home unless symptoms difficult to manage and in that case would want to come to the hospice as would not want family to be in any distress’ • 16/12/2020 – ‘Preferred place of care in dying is now hospice’ and ‘no rush to discharge from hospice but likely residential care if remains stable with us’ • 20/12/2020 – Mr G ‘would like to stay at [the Hospice] for Christmas but realises this isn’t a long term option, and then said he would like to consider residential care as feels neither households will cope with his needs at home’ • 21/12/2020 – ‘Conversation with family… aware of decision to consider a nursing home placement should [Mr G’s] condition stabilise’ • 22/12/2020 – ‘No [discharge] plans at present. [Review] at the end of the week if appropriate for likely nursing home placement’ and ‘Discharge plans have been tentatively mentioned but no action yet’ • 23/12/2020 – ‘For [nursing home] placement, no action on plans yet taken’ • 24/12/2020 – ‘Visited by wife and son – whilst they were visiting Matron had a conversation discussing future plans with [Mr G] and whilst he previously said he was happy to consider transfer to nursing home, he was a little more reticent wanting to visit and choose himself or consider care home – Matron talked through the options and the funding situation/implications – he and we will discuss further with his daughter tomorrow’ • 26/12/2020 – ‘was going to discuss discharge planning with his family today, what he would like to aim for’ • 27/12/2020 – ‘discussed with patient regarding discharge plans. Still awaiting [Mr G’s] decision on discharge destination’ and ‘His wish is now to go to a nursing home’ • 28/12/2020 – ‘continue with discharge plans for nursing home’ • 29/12/2020 – ‘planned discharge to [the Care Home]’ and ‘Son and daughter have visited today. Matron has had a conversation with the family to advise them that when he is discharged to [the Care Home] he can have one visitor per day’ • 30/12/2020 – ‘Accepting of [the Care Home] as discharge destination’ • 31/12/2020 – ‘[Mr G] feels well today, happy to go to [the Care Home] this afternoon. Son and daughter present.’
112. That evidence shows that Hospice staff encouraged Mr G to make his own decision about his discharge destination and to discuss this with his family. The family were involved in discussions with Mr G and the Hospice over several days.
113. There is nothing in the evidence to suggest that Hospice staff sought to persuade Mr G to make a particular decision. The Hospice also made the family aware of the Care Home’s visiting arrangements two days before the transfer happened. For those reasons we found the Hospice’s actions were in line with NICE guideline 27. We have not upheld this issue of complaint.
Complaint about the Care Home
114. Mr G’s family complained Care Home staff were not aware of the extent of Mr G’s immobility. They also complained Mr G was alone for lengthy periods because of limits on family visits and the requirement for Mr G to isolate from other residents for the first 14 days.
115. Mr G was transferred to the Care Home on 31 December 2020. Mr G’s daughter said her dad telephoned her at 6am on 2 January 2021. He said staff did not know he was immobile and he was being left to ‘rot and die’. He asked to go home. Mr G’s daughter then spent several days organising this. Mr G transferred home on 8 January 2021.
116. In their response to Mr G’s family’s complaint, the Care Home Manager wrote:
‘your father’s mobility was assessed prior, during and on discharge from our care. The pre admission assessment confirmed that he was to be transferred with two people present and a frame, and that this would be confirmed on admission to the home. On 2nd January his manual handling risk assessment was updated to reflect that he required the use of a hoist. The nurse completing the assessment engaged in conversation with your father who said he was too tired to stand up and move safely.’
117. Mr G’s family considered this statement was untrue as their dad was incapable of standing.
118. Our nurse adviser noted the Care Home assessed Mr G before his admission. Staff found he had full mental capacity (Mental Capacity Act 2005) to make his own decisions and choices about his care. Staff also noted Mr G was able to transfer (a method of moving a patient from one surface to another, where the patient is capable of helping with the transfer and is able to bear weight on at least one of their legs) with two members of staff and a walking frame or stand aid hoist (equipment that helps people with limited mobility stand up from a seated position).
119. The records show that when Mr G arrived at the Care Home, they noted Mr G: ‘usually stays in bed… need two staff [for transfers from the bed]. Was very tired [so] unable to assess the weight bearing.’
120. That record shows the Care Home was unable to assess whether Mr G could bear any of his own weight.
121. We asked the nurse adviser if Care Home staff took appropriate account of Mr G’s mobility issues when caring for him.
122. The nurse adviser said there are care plans, and Movement and Handling Risk assessments within Mr G’s Care Home records that fully explain his mobility needs. Mr G required a hoist, sling and two carers for all transfers and slide sheets plus two carers for all repositioning. The documentation is also clear in respect of Mr G’s wishes about being moved. There are several entries within the daily care records that show Mr G wanted to stay in bed and watch television. He also declined to be turned and repositioned, even though staff advised it was in his best interests. By acting on Mr G’s wishes, staff actions were in line with the Code which says nurses should ‘2.5 respect, support and document a person’s right to accept or refuse care and treatment’.
123. We looked at whether Mr G was left for extended periods and if so, the reasons for this and whether he received appropriate care in this regard. The Care Home manager’s response to Mr G’s family’s complaint included:
‘The covid 19 pandemic has unfortunately seen a dramatic change to visiting arrangements … The company risk assessed all new admissions and measures were put into place to ensure the health and safety of the residents, our teams and visitors to the home. This included a 14 day isolation for all new admission which was explained to your father during his FaceTime call with myself the Home Manager.
…
We appreciate that your father may have felt that he was on his own for periods during the day. Certainly in the first 14 days of admission for all new residents during the isolation. We accept that it is difficult during this time, the in-house activity and care team had engaged in conversations and 1:1 sessions with your father. For the one-to-one interaction, the activities record details that [Mr G] had 6 one to one sessions after admission until his discharge on the 8th January 2021, some of those days also included permitted family visits.’
124. The Department of Health & Social Care were issuing guidelines to nursing and care homes regarding the protection of staff and residents from Covid 19 and the reduction of the spread of the virus. Initially, care homes closed their doors to all visitors but by the time Mr G was admitted to the Care Home, these had been partially lifted allowing each resident one visitor on a pre booked basis.
125. Department of Health & Social Care guidance Admission and Care of Residents in a Care Home during COVID-19 (version 2, December 2020) included that new residents should be isolated in their own room for 14 days – they were not allowed to mix with the rest of the nursing home community.
126. Mr G arrived late afternoon on 31 December 2020 and was discharged home on 8 January 2021. This was within the 14 days isolation period – so Mr G was not allowed to mix with other Care Home residents.
127. We can understand this would have been lonely for him and not what anyone would have wished to put him through if it had been avoidable. By restricting visiting, Care Home staff were acting in line with the Code that says nurses should ‘19.3 keep to and promote recommended practice in relation to controlling and preventing infection’.
128. We can see from the records Care Home staff did allow Mr G four visits from family over three days during this time. This was in line with NHS England: Visiting healthcare inpatient settings during the COVID-19 pandemic: principles.
129. It was difficult for Mr G and his family to have strict limits on the amount of time they could spend together, but staff were acting in line with the Nursing Code and NHS England visiting guidance to prevent and control infection during the Covid-19 pandemic.
130. Mr G’s Care Home records show Mr G was not left on his own for lengthy periods at a time, as staff needed to change his position every three hours, including throughout the night. We hope this provides some reassurance to the family that Mr G was regularly interacting with staff.
131. We can understand the family and Mr G wanted more visits than the Care Home allowed and were distressed at the limitation of the visits they did have. However, the nurses and Care Home manager were acting in line with the Nursing Code when following the Department of Health and NHS England guidelines to protect staff and residents from Covid-19 infection. The family believe Mr G was left on his own for lengthy periods of time. While in the 14-day isolation period Mr G’s interactions with others would have been limited – but we have seen no evidence of staff leaving him on his own for lengthy periods of time, not least because of the need to reposition him in bed.
132. In summary, we have found no evidence of failings by the Care Home. We have not upheld Mr G’s family’s complaint about the Care Home.
Complaints about NHS England
Issue 1 – guidance 133. Mr G’s family said NHS England issued guidance to the NHS during the COVID-19 pandemic that took precedence over its two-week suspected cancer referral guidance (NICE guideline 12). Mr G’s family complained this result in their dad’s cancer assessment and treatment being delayed and possibly affected his outcome.
134. In April 2020, NHS England published ‘Urgent Cancer Diagnostic Services During Covid19’. On self-isolation prior to cancer diagnostic appointment, it said: ‘Where clinically appropriate, patients and members of their households should follow national guidance on self-isolation, prior to attending Covid19-protected sites’. This guidance also said: ‘Existing NICE guidelines on suspected cancer referrals and diagnostics should be considered alongside these pathway suggestions, however, flexibility in response to local circumstances is vital’.
135. NHS England published ‘Operating framework for urgent and planned services in hospital settings during Covid19’ in May 2020. This distinguished between planned and elective care and urgent and emergency care. For planned and elective care - the guidance said admission should only be for patients who have isolated for 14 days before and have preferably tested negative and remain asymptomatic; outpatients should be asymptomatic. For patients classed as urgent, there was no need for 14-day isolation.
136. On 8 June 2020, NHS England sent a letter to cancer managers stating: ‘Booking appointments for this group of patients is a priority. Local systems should schedule diagnostics or treatment for this group, alongside new patients referred into cancer services, on the basis of clinical priority’.
137. The Ombudsman’s Principles of Good Administration say that organisations should have policies and procedures that are clear. Applying this to NHS England means that it needed to provide clear guidance to organisations providing care for NHS patients.
138. NHS England’s April 2020 guidance did not specify whether local infection prevention and control policies should have taken precedence over the two week wait cancer referral guidance. NHS England’s May 2020 was clear that urgent care should take precedence over the Covid-19 self-isolation guidance. NHS England’s 8 June 2020 guidance provided further clarity that patients referred into cancer services should be prioritised.
139. As such, we have found that NHS England’s guidance met the requirements of the Ombudsman’s Principles of Good Administration. It gave clear guidance to NHS Trusts that cancer patient appointments should be prioritised and did not require a 14-day self-isolation period before diagnostic procedures. For that reason, we have not upheld this issue of complaint.
Issue 2 – complaint handling 140. Mr G’s family complained about delays in NHS England’s handling of their complaint and failure to arrange/update them about a local resolution meeting with the organisations they had complained about.
141. The family wrote to NHS England on 8 April 2021. They complained about the care and treatment Mr G received from the GP Practice, the Trust, the Hospice, and the Care Home. The family also complained about NHS England – that there had been multiple failings in referral, diagnosis, and treatment of cancer because of restrictions NHS England put in place because of Covid-19. These restrictions included patients not being able to see GPs face-to-face, and postponement of appointments to ensure patients had self-isolated for two weeks prior.
142. NHS England co-ordinated the complaint responses from all the organisations complained about. It sent the co-ordinated response to the family on 21 October 2021. This was just over the six months target (The Local Authority Social Services and National Health Service Complaints (England) Regulations 2009 – the Regulations).
143. We can see the family’s advocate was contacting NHS England for updates during that time and NHS England provided updates and tried to give timeframes for when the co-ordinated complaint response would be ready. We have seen evidence NHS England was having to chase the other organisations for responses to the family’s complaint.
144. The Regulations include that bodies (subject to a joint complaint) must co-operate for the purpose of co-ordinating the handling of the complaint and ensuring the complainant receives a co-ordinated response.
145. That evidence showed us NHS England provided Mr G’s family with the complaint response three weeks later than the six-month target. The reason for the delay was the other organisation being unable to provide their contribution with that target date.
146. NHS England acted in line with the Ombudsman’s Complaints Handling standards by chasing those organisations for their contributions. As such, the three-week delay was not caused by NHS England’s actions, and it took the expected actions to co-ordinate the complaints response.
147. For those reasons, we found that NHS England was not responsible for the three-week delay in the complaint response.
148. Mr G’s family considered NHS England had not addressed all their complaints. One of the issues concerned the Hospice – Mr G’s family said there was an inaccurate date of diagnosis on Mr G’s Hospice admission form.
149. NHS England contacted the Hospice in January 2022. There was a delay in the Hospice providing a response. This, in turn, delayed NHS England’s final complaint response to 28 July 2022.
150. While that delay was not of NHS England’s making, we did not see evidence that it was regularly following this up with the Hospice. This was not in line with the Regulations, which states complaints should be dealt with efficiently.
151. We acknowledge that NHS England’s actions here should have been better. When making our findings, we look at whether the error falls so far below the expected standard as to amount to maladministration. In this case, we have found that NHS England’s failure to chase the Hospice for its complaint response was not such a significant departure from what should have happened as to amount to maladministration.
152. On 16 August 2021, the family’s advocate suggested they could ask for a local resolution meeting once they had received the written response to their complaint. In early September 2021, NHS England updated the family about its investigation and the family asked ‘Once the responses are received and the review fully complete, how long do you anticipate it may be before we are invited to or have the opportunity to attend a meeting with those involved?’. NHS England said it was unable to give a time limit. On 7 December 2021 NHS England emailed Mr G’s daughter explaining it would remind the other organisations that the family would like a meeting – but noted it could not insist the organisations attend any meeting.
153. It is not mandatory under the Regulations for organisations to have local resolution meetings with complainants.
154. Mr G’s family were disappointed that such a meeting did not happen. We can understand that, in view of their efforts to follow up on their concerns about their dad’s care.
155. In the absence of a requirement for NHS England to arrange a meeting, we cannot find that NHS England has done anything wrong.
156. For the reasons set out above, we have not upheld Mr G’s family’s complaints about NHS England’s complaints handling.
Conclusion
157. Mr G and his family faced the heartbreak of his terminal cancer diagnosis during the Covid-19 pandemic. The restrictions to our freedoms introduced at that time will have made their experiences considerably more difficult. Mr G’s family, understandably, wanted to know whether all organisations involved in their dad’s care over that period acted appropriately and, if not, whether this had a negative impact. We hope they can take comfort from the answers and explanations in the findings we have made.