The Trust failed to provide a timely follow up appointment after it diagnosed Mr X’s cancer 23. Miss X raised Concerns about there being no follow up activity for some time following her father’s diagnosis. She says her family called on a number of occasions to chase up on the lack of scans/staging/prognosis and pain management, but nothing was done to help her father until he was admitted to hospital after being taken to the emergency department (ED) in September 2022. She said this led to missed opportunities to reduce her father’s suffering.
24. We note the Trust apologised for the lack of a follow up review being arranged in a timely manner as planned. It said this was because of service pressures due to the Covid 19 pandemic at the time. It recognised that it was not ideal to have a 12 month wait and accepted that earlier review may have led to conversations on pain management and other symptomatic care. The Trust did not recognise any adverse impact on Mr X’s care from the delay.
25. We considered events prior to September 2022 to decide if there was a significant failing here and what, if any, the impact was. Our adviser explained that, upon Mr X’s diagnosis in 2021, his treatment plan was established, and no further investigations were planned. This was in line with NICE NG131 which recommends ADT for patients who have metastatic prostate cancer and significant comorbidities. Our adviser explained that due to Mr X’s frailty, ADT was the only option available to treat his cancer.
26. Our adviser explained that NICE guidelines do not specify any requirements for follow up timeframes, so the delayed review did not breach any standard under these. EAU guidelines recommend that, after starting ADT, patients are reviewed every three to six months. As such the 12-month delay before Mr X was reviewed was not in line with EAU recommendations and so was a failing. We can see the Trust was right to apologise for this. In order to decide if this was sufficient remedy, we considered what the impact of this was on Mr X’s clinical management.
27. Our adviser stressed that these are not requirements, only recommendations. They said being seen earlier would not have altered Mr X’s treatment plan. ADT was the only option available to try and slow the cancer growth. As long as this was having some beneficial effect it would continue. They explained a review would be for symptom management (for example pain). A raised PSA level (indicating ADT becoming less effective at slowing the cancer growth) would not alter the options available to doctors.
28. We reviewed Mr X’s Trust records and his GP records for any evidence of his situation changing following his treatment starting. Miss X informed us she called several times to chase up on a review and raise concerns about her father’s deterioration. We were unable to find any record of a call to the Trust in April 2022 she advised she had made when her father’s six-month review was late. It is difficult to form a view on what happened at this time due to the lack of evidence to go off.
29. We note that the Trust’s Head of Urology apologised in a meeting with Mr X’s family for any difficulties they had in contacting the service during this period and that changes had been made the administration around telephone contacts. We cannot prove what may have happened or gone possibly wrong regarding telephone calls during this period due to a lack of evidence. However, it does show a willingness to improve services, even if it was not possible for the Trust to say for sure if there was error on the part of its staff in passing on queries.
30. Mr X’s GP records show a number of contacts for the time period in question. These mainly detail ongoing care management for Parkinson’s specific symptoms and medication. There are also notes relating to a urinary tract infection and a skin blister. These are not particularly relevant to his ongoing cancer care. However, in late August we noted discussions with his GP on 23 and 24 August reporting him being in pain, which would.
31. We also found reference in later hospital records of his PSA being checked on 1 September and now being 33.5. We were not able to identify who did this as it is not in the GP records. On balance of probability this may have been checked by Mr X’s assisted-living provider. Nonetheless, this also provides some useful information on his condition during the year following the start of ADT treatment.
32. The PSA in September 2022 was lower than the level recorded before ADT was started a year earlier. This indicates ADT had been, and still was, of some benefit in slowing the cancer spread. The appearance of new pain symptoms just prior to this new reading indicates a point at which the ADT was, while still beneficial, beginning to lose its effectiveness. The cancer had now progressed a bit further and the PSA would start to progressively rise to reflect this. We can say with a reasonable level of confidence that the PSA level, if checked prior to that point in a review, is likely to have been lower than 33.5 for some time.
33. The next contact with the Trust we were able to find record of is a call from Miss X to the Trust on 2 September 2022. This details a discussion with a Trust Cancer Nurse Specialist raising concerns about her father deteriorating and suffering more pain. The CNS arranged for Mr X to be admitted to hospital in the Medical Assessment Unit (MAU) to be seen. We cover the care following this call later in this report.
34. From this information we are able to say that Mr X is likely to have become more symptomatic for his cancer around 23 August, which is a week before the Trust was aware of this and he was subsequently admitted to hospital. This admission was, in effect, a review of his cancer care, prompted by changes in his circumstances rather than a scheduled one.
35. This also, coincidently, resulted in the original plan being met, as he was seen within 12 months. It is understandable if Miss X had doubts about whether the Trust would have met this timeframe if not for this turn of events. The first indication of a scheduled review we found in the records was for a telephone consultation on 17 November 2022, which would not have met the timeframe planned in 2021.
36. Our adviser said that an earlier review of Mr X would have resulted in no change to his management. His PSA was lower than it was before his ADT treatment started, which indicates it was somewhat effective and should continue, and no pain issues were evident until later August. They conclude an earlier review would have not prompted any changes to his cancer care.
37. We note the Trust has accepted that earlier discussions may have resulted in better pain and symptoms management. While the Trust has acknowledged earlier discussions may have provided this opportunity, it seems unlikely there was a need left unmet as a result of not being reviewed prior to late August 2022. The first mention of new cancer specific symptoms (pain) was in late August. This was on a background of fairly regular contact with his GP over other health issues. We would expect this to have been mentioned earlier if his pain levels had increased prior to that point.
38. Based on this, we concluded there was no clinical impact from the failure to offer a follow-up appointment prior to Mr X needing hospital care in September 2022. Had he been reviewed before then, it is unlikely that would have resulted in him avoiding the admission. This would probably have been necessary to manage his recent change and worsening in condition. We see the lack of the expected follow up, as communicated to her in the original MDT plan, led to Miss X worrying more than she should have, so there was an emotional impact on her.
39. We found that there was a failing in respect of the accepted delay in arranging a review. This was not as severe as feared, and did not lead to as serious an impact, which is reassuring. There also appears to be some mitigating circumstances for that delay due to Covid 19 we should take into account. The apology provided appears to be proportionate remedy to address the worry caused to Mr X’s family.
There was a lack of input from the urology or oncology teams when the Trust admitted Mr X on 2 September
40. Miss X said her father's poor condition upon admission should have prompted specialist input, and there was an apparent lack of this. Reasonably enough she felt these specialisms had some role to play in his care at that time. She felt the lack of this prevented better care of his cancer and possibly hindered getting an accurate prognosis of how long he had remaining to live.
41. In its response the Trust says a urology referral could have been sought when Mr X was admitted to MAU as well as input from Oncology. This suggests the Trust accepts this was a possible option but not necessarily a required one. We considered if this is something that should have happened, as opposed to could have happened.
42. Mr X was admitted to the MAU on 2 September 2022 from his assisted living accommodation. The medical records record him suffering from hallucinations and limb pain at that time. The hallucinations were related to his Parkinson’s and an adjustment of his medication was made to address these. The limb pain was identified as neuropathic (nerve) pain caused by the spread of cancer) and his pain medication adjusted to address this.
43. An assessment by the palliative care team on 12 September records that Mr X reported he had not hallucinated for two weeks following his medication changes, and that his neuropathy was now much improved when not mobilising following an increase in his Butrans patches (chronic pain medication) and introduction of Gabapentin (an anticonvulsant).
44. This now resolved the reasons for Mr X’s admission, but he then suffered a urinary tract infection (UTI). He remained in hospital until this was resolved.
45. Once his UTI was cleared, he was then moved to a Discharge to Assess (D2A) bed in a care home on 12 October to monitor whether he would be able to return to his assisted accommodation. We found no direct referral or involvement from Urology or Oncology during this admission, which is consistent with Mrs X and the Trust’s accounts.
46. We did find a record of a call from Miss X to Urology on 22 October and correspondence from Mr X’s GP dated 24 October. The GP noted his recent PSA level from 1 September. The GP queried if further monitoring of this was needed, or if an updated plan would be beneficial. The Trust responded to confirm Mr X was scheduled for a telephone consultation on 17 November 2022. Considering his PSA was checked, and he had a symptomatic review, at the start of September, this would now be in keeping with EAU guidelines recommend symptomatic review every three to six months.
47. However, we acknowledge this would be the first input from Urology or Oncology since October 2021, which would be understandably a cause for concern for Miss X. Our adviser did not identify any standards require specialist input during this time, but provided two insights to address this concern.
48. Firstly, our adviser said it was known that Mr X’s hormone therapy was now becoming ineffective. As there was no other treatment option left to try, and this would still have some benefit and not harm him, it would continue. They observed that specialist input, or more PSA checks, would not alter this situation or provide other options for his clinical management.
49. Secondly, our adviser said Mr X’s deterioration suggested his needs were for optimising his palliative care with medication adjustment. He got this during his hospital admission on the MAU, with some input from a palliative care assessment. They said specialist input would not alter this management or add any value to that care (for example allowing an accurate prognosis). They said the lack of input from Urology or Oncology would have no adverse effect on Mr X’s care during this time.
50. The Trust says input could have been sought, but our adviser could not identify any standard requiring that it should have been done. Nor did they identify how this would have added any value. We recognise it may have provided reassurance at a difficult time to him and his family that his care was being monitored by specialists. This may have been a hope or expectation of the family but there appears to have been no clinical requirement for this input and it would offer no practical benefit. Therefore, its absence had no adverse effect on care.
51. We should acknowledge that the telephone call was also an opportunity to discuss and explain where Mr X was in his journey to his family and possibly discuss a prognosis. There is a lack of information in the records on what was specifically discussed. Therefore, we are unable to form a view on whether this was asked about, or any attempt was made to invite questions on this. It would be unfair to criticise either party for not raising the issue as it is only possible in hindsight to know how things turned out. We recognise that subsequent events contributed to Mr X’s family’s concerns about a lack of information to help prepare for what may (and did) happen later.
52. We saw no failing in Mr X’s care during that time. Miss X is correct that Oncology and Urology specialist input was not sought during her father’s admission, but this appears to have been what we would expect to happen.
On 30 November 2022 and 1 December 2022, the Trust inappropriately tried to discharge Mr X to his assisted living accommodation, when it was already known he could not manage there 53. Miss X said that, following a period out of hospital, her father needed to be readmitted at the end of November after two falls at his assisted accommodation. This issue centres on the poor condition of Mr X was now in, and how his needs were greater than his accommodation could handle. She highlighted his back-to-back re-admissions around this time and that his assisted living provider said they could not manage his needs.
54. The Trust did not accept any failing here. It said Mr X was initially considered well enough to return to his accommodation, with community support in place, before his condition then worsened. According to its account, events eventually led to him being kept in hospital for some time for monitoring in case he was able to regain some independence, before concluding he needed a care home placement by 16 December.
55. We carefully reviewed the available records to establish what happened around this time. These document that Mr X was admitted back to hospital following a fall at home on 29 November. Prior to this he had been admitted to the OPAU on 25 November suffering from thigh pain, a UTI, and having suffered a fall. He was discharged home on 28 November but suffered another fall the next day which led to his readmission to hospital.
56. Physiotherapy notes from 30 November document a discussion with Miss X. She shared that she had been unhappy with her father being placed in the care home discharge to assess (D2A) bed before going home previously. She said his care had been poor there and she felt this adversely affected his mental health. She was keen for her father to return home directly to his assisted accommodation if possible. The notes document a plan to try and arrange this, subject to Mr X being medically fit for discharge and him being able to mobilise.
57. We found no evidence of an attempt to discharge him at this time, or a timeframe set for attempting this. As such the plan appears to have been a conditional one, requiring Mr X to be sufficiently well and independent to cope at home first.
58. This plan also appears to have been an attempt to consider Miss X’s wishes, although this may have been a misunderstanding of her intentions here. Our understanding is she was not necessarily keen on her father being back at his assisted accommodation, but rather wished to avoid him going back to the nursing home D2A bed she was so unhappy with. She wanted him to be placed elsewhere where he would be safe. Nonetheless, these initial discussions seem to have been swiftly overtaken by events.
59. At 7pm Mr X’s notes detail his catheter had become dislodged, he was unsteady on his feet and suffering delirium. At 9am the next day the notes outline plans to ‘update family on deterioration today’ and that he was ‘not ready to [go to] care home today’ at 15.30pm. According to summarising discharge notes later in December he was kept in thereafter, placed on precautionary antibiotics, seen by palliative care on 12 December and moved to a ward for ongoing care on 20 December to await a care home placement.
60. Based on the notes, we were unable to find evidence of an attempt to discharge Mr X to his assisted accommodation. We can see initial plans to work towards this outcome, if possible, only if he was well enough. These were then abandoned due to Mr X’s not being well enough, and other options explored.
61. Our adviser said that the initial discharge from the OPAU on 28 November was in line with NHS England guidance on going home from hospital (that discharge is not complained about). In their opinion, the subsequent plan to discharge him back there again, after re-admission, was flawed. This is due to the recent unsuccessful discharge and Mr X’s increasing confusion. They explained it should have been possible to anticipate moving him back to his assisted accommodation would not work out based on this recent history.
62. Our adviser said plans should have been made for increased package of care/nursing home/hospice/long term hospital care instead. However, they also noted there was no attempt to put the initial plan into action, and when Mr X’s condition did not improve, any discharge plans were modified. As such there is no standard to judge actions against as there were no actions taken or attempted in relation to this preliminary plan.
63. Explanations from the Trust indicate that Mr X was kept in hospital to monitor his progress and by 10 December he was deemed physically well enough to discharge. However, he then became more sleepy from this point, and kept in to monitor this. Between 10 and 16 December he did not improve, and by 16 December it was decided to arrange a care home placement, as his assisted accommodation provider said they could no longer meet his needs.
64. As Mr X was too unwell to leave hospital for some time, we see there is no impact from the initial plan’s shortcomings. Ultimately the outcome of the period of monitoring his condition over the next couple of weeks was a decision in line with what our adviser thinks would be the right plan.
65. We found the plan to discharge Mr X again to the same place he had not coped at, was apparently incorrect. We note this was only a provisional plan, never actioned, and ultimately, superseded as his needs changed. Trust did plan to discharge him later, to a place that could meet his needs, but only once he was well enough to move.
66. It is understandable why Miss X would have been concerned her father might have been at risk of going back to his assisted accommodation unsafely. This did form part of discussions at the end of November about what to do next. We found that the Trust only initially considered that option before updating its plans in response to events, so there is no evidence it attempted an unsafe discharge as feared.
In December, the palliative care nurse agreed to find out what was happening, including Mr X’s prognosis and then did not contact the family again 67. Miss X's specific concern on this point is that she was left waiting for an update that never came, despite being assured by the nurse this would be arranged.
68. In its responses the Trust accepted that a family member asked about Mr X's prognosis in December and a staff member was trying to arrange for them to speak to the right people about this. This appears to have resulted in a doctor informing the family on 19 December that Mr X probably had less than 12 months to live.
69. The Trust apologised for this being potentially misleading and reassured Miss X the doctor had been advised to take greater care with such discussions. We considered the possibility that the nurse had taken action to arrange an update, and this may have taken the form of someone other than the nurse providing that update.
70. We located notes made by the palliative care nurse for an assessment on 6 December. There is no mention of agreeing to find out what was happening regarding Mr X’s prognosis for family members. We found no mention of this in later palliative care discussions either. The first record of a formal consideration of a prognosis occurred on 22 December (we cover that consideration later in this report) but this had been scheduled previously in November.
71. We did find a documented discussion between Miss X and a ward doctor on 10 December recording the doctor advising there would be no further role for Oncology input in her father's care, as there were no more options to try for treatments. The doctor advised Mr X needed palliative and GP symptoms management now, with a likely prognosis of less than one year to live.
72. The notes indicate Miss X reported her father's GP was unsure of what his plan was, and the doctor recorded that they would refer on to Oncology to query if a more accurate prognosis could be provided. We note some indication from Miss X’s, and the Trust’s, accounts in the complaint correspondence that a doctor also gave an estimated prognosis of less than 9 months to live on 19 December too. However, we were unable find any reference to this in the medical records.
73. It is difficult to come to a view on this matter due to the lack of firm evidence. We have little to support what happened in relation to discussions with the palliative care nurse other than the accounts from each side. These seems to support that staff were asked about Mr X's prognosis and staff agreed this would be escalated to appropriate clinicians.
74. This is not disputed, but we could not find any evidence to show any assurances were given that more than passing on the concerns was promised. A palliative care nurse would not be able to deliver a prognosis, so it would be appropriate for one to ask a doctor to advise Mr X's family on these matters.
75. The two discussions with doctors later could potentially have been the outcome of the nurse passing on concerns, but we cannot link these events evidentially with any confidence. The nurse’s actions to escalate concerns may have made possible the later discussions with doctors. This is not usually a level of detail we would expect such notes to go into usually. We also cannot rule out the possibility of some miscommunication, through no fault of anyone, on expectations or intentions.
76. We recognise how this situation was difficult for Mr X’s family as they were now actively trying to get answers. We concluded is there is not enough evidence to establish wrongdoing on this point, or prove the right actions were taken. We are unfortunately unable to come to a view on the matter for this reason.
There was a four-week delay in the Trust acting on blood tests taken on 25 November, which showed Mr X only had a few weeks left to live, and instead incorrectly told the family his prognosis was nine months 77. Miss X said her father's urologist provided a prognosis on 22 December, of her father having 8 weeks to live, which contradicted a prognosis given only three days earlier of 9 months.
78. She believed it would have been possible to work out and share a prognosis as early as 25 November based the results of a blood test showing his PSA was now 108. She said either news of his imminent death was known about and not passed on, or the blood test result should have caused concern and been escalated to Urology but was not. She said this resulted in her family losing the opportunity to better prepare for her father's death, as he died within two weeks of her being told the 8-week prognosis.
79. We note that her view on this was initially based on a letter that was sent from the Trust to her father's nursing home on 24 November which she believed included a prognosis predicting he had 8 weeks to live. Coincidently, this was roughly 8 weeks before his death on 4 January 2023, so we can understand how her concern originated. She never saw this letter due to mismanagement at the care home (which she acknowledges would not be the Trust's fault).
80. The Trust responses say the first encounter the urologist had with Mr X was on 17 November, which is when the urologist requested his GP test his PSA levels again. It says the blood test was done on 25 November and the plan was to arrange a follow up two weeks later. This was not possible to arrange, and a 4 week follow up was scheduled instead. The Trust says that, at this point (on 22 December), the urologist made a prognosis based on the high PSA level from the blood test in November.
81. Significantly, the initial assumption underpinning this concern appears to have been resolved during the complaints process. The Trust explained the 24 November letter did not contain any prognosis information, as it was only a notification that Urology had scheduled a review for 22 December. A copy of the letter was provided to Miss X as proof.
82. Nonetheless, this concern persisted, partly due to the different information provided on prognosis through December. We carefully considered the evidence and sequence of events to work out if an accurate prognosis could have been provided sooner than this, and if so, if it should have been.
83. Based on the information in the medical records, we were able to establish a sequence of events. On 17 November the Urologist reviewed Mr X’s care as scheduled (and detailed earlier in this report). They wrote to his GP to request an urgent PSA test be done and to ask about his performance status (a tool used to measure a patient’s level of frailty). A further review was scheduled for 22 December and a letter issued to notify Mr X and his family.
84. There is mention in the discharge summary of 28 November that Mr X’s PSA was found to be 108 and this information would be passed to the urologist. Therefore, we know the PSA was at least available to the Trust by then. It may have been available to the Trust as early as 25 November as claimed.
85. In addition to this we know Mr X was readmitted to hospital at the end of November as his health started to decline. The documented discussion between Miss X and a doctor on 10 December shows a plan at that time to discharge him to a care home based on recent Oncology input. This input recommended stopping his ADT (as the recent high PSA level suggested this was no longer effective), and suggested radiography for symptom control may be of benefit later. This indicates consideration of mid to long term plans and does not indicate a likelihood of imminent death.
86. As referenced earlier in this report, Miss X was advised there was no further role for Oncology now as her father needed to palliative and GP management and his prognosis would be less than a year. Anecdotal evidence indicates Miss X was then advised by a doctor on 19 December her father had less than 9 months to live.
87. Within three days, his urologist then completed the scheduled review on 22 December and provided a prognosis less than 8 weeks to live (from that date, not 24 November when the PSA test was done). Significantly, we see this view was based not just on the recent high PSA level, but also on recent care developments since that blood test, scan results, and a low testosterone level confirming that the hormone injections were still working, but now ineffective at slowing the cancer.
88. Sadly, Mr X then deteriorated further quite unexpectedly while awaiting a care home placement, within two weeks on 4 January. As such he died sooner than anticipated as the clinical indications in December suggested he would potentially survive through to at least February.
89. We asked our adviser for their insights on the sequence of events and whether it would have been possible, or expected, to have provided Miss X with more accurate, and timely, information on when her father would die.
90. Our adviser said that, at diagnosis, Mr X was already a frail man with multiple other health problems. The Cancer Research UK website gives a 5-year survival rate for metastatic prostate cancer of 50%. In view of Mr X’s other health problems, his chances would have been less optimistic than this. Taking that into account this gives a reasonable overview of his prognosis as of late 2021.
91. GMC Good Medical Practice states that:
‘The exchange of information between medical professionals and patients is central to good decision making. You must give patients the information they want or need in a way they can understand. This includes information about: • their condition(s), likely progression, and any uncertainties about diagnosis and prognosis • the options for treating or managing the condition(s), including the option to take no action • the potential benefits, risks of harm, uncertainties about, and likelihood of success for each option’
‘You must be considerate and compassionate to those close to a patient and be sensitive and responsive in giving them support and information. You must follow our more detailed guidance on Confidentiality: good practice in handling patient information.’
92. Our adviser said the diagnosis and prognosis was communicated to Mr X and his daughter in accordance with this guidance. They explained that, once PSA levels start to rise, despite ADT, a patient's prognosis becomes more guarded with an average life expectancy of 12 to 18 months. This would be the top end of an estimate and would be considered as an ‘at best’ scenario.
93. Considering Mr X’s other significant comorbidities, he would be unlikely have been in that higher bracket as of September 2022. His frailty would make it more likely for changes and deteriorations to be more unpredictable, and swift, when they occurred.
94. Based on this our adviser said the advice to the family estimating a possible prognosis of 9 months given in December 2022 is not an entirely unreasonable estimate. This is in line with expected range set out by Cancer Research UK considering Mr X was more frail than the average patient due to his other health issues and would have been more ill than before.
95. Similarly, when an 8-week prognosis estimate was given shortly later by his urologist, this was also was not an unreasonable estimate. Mr X could have lived longer than another 8 weeks, or deteriorated even sooner (which is sadly what happened). Our adviser explained there is no reliable method for predicting remaining life in such a scenario, so either extreme cannot be discounted. A prognosis of between 8 weeks and 9 months would be entirely possible. The decision to work towards a placement in a suitable care home appears, in this context, a reasonable one.
96. It appears coincidental that the shorter estimate turned out to line up with the PSA result being roughly 8 weeks before Mr X dying, but this was not likely to be based on it being possible to have prior knowledge of his remaining time.
97. Our adviser stressed that while it transpired that Mr X deteriorated after this review and died much sooner than hoped, he also could also have remained relatively stable following his move from the Trust and lived longer than he did. Had that happened the prognoses provided may have proved more accurate.
98. Our adviser said giving an exact prognosis in such a situation is impossible. Mr X’s general frailty and poor prognosis was communicated to the family by several doctors on several occasions. Mr X’s condition deteriorated quickly and unpredictably, latterly on the background of long-term serious illness. They said this was not a failing in communication, but a limitation of how possible it is to predict future events with current medical knowledge in such a situation.
99. What we are seeing is that the information available at the time of his PSA result in November 2022 would not have allowed his later death to have been predicted any more accurately. At that time an expectation of 9 months, or up to a year, would not have been unfeasible, so the situation would not have been so urgent as to prompt an immediate review.
100. The four weeks between then and the planned review does not appear to constitute an unreasonable delay. In fact, it appears to have allowed time for more clinical information to be gathered. This helped estimate that Mr X’s life expectancy was now lowering due to subsequent events. This seems unlikely to have been possible to say if he was reviewed earlier without the benefit of that knowledge. However, even this would not have allowed the Trust to say what would happen later with any more accuracy.
101. We did not see an unreasonable delay in acting on information which would have predicted when Mr X would die. The PSA result alone would not allow prediction of only a few weeks to live. Also, each prognoses provided did prove, in hindsight, to be inaccurate, but not entirely unreasonable. The increasingly unpredictable state of Mr X’s health, rather than any failure to anticipate events, appears to be the root cause of this.