Issue 1 - the prostate biopsy
19.Mr L says the prostate biopsy on 1 August 2017 was not comprehensive enough because it did not take enough samples from a wide enough area of his prostate. He says it missed his aggressive prostate cancer, which the Trust diagnosed after the biopsy on 23 March 2018.
20. The records show that the biopsy on 1 August 2017 took 10 samples from the part of the prostate where cancer was suspected. The Trust found low grade cancer in one area.
21.The Trust explained Mr L had a targeted biopsy, rather than one that took random samples from across the prostate, because the MRI scan showed a specific lesion that looked like cancer, and his other tests results were normal.
22.We considered what should happen in these circumstances. GMC Good medical practice says doctors must provide a good standard of care and should arrange suitable investigations where necessary.
23.To help us consider if the targeted biopsy was a suitable investigation, we considered the evidence in the EAU prostate cancer guidelines. These guidelines recommend what should happen in a prostate biopsy.
24.The guidelines say 10 to 12 samples should be taken during a first prostate biopsy. This is what happened in Mr L’s case.
25.The guidelines also say the samples should be taken from both sides of the prostate, top to bottom. This did not happen in Mr L’s case. However, this part of the guideline does not account for people who have already had an MRI scan.
26.The guidelines recognise that MRI targeted biopsies take place, and that they are effective. They say: ‘A large body of evidence suggests that [MRI targeted biopsy] has a higher detection rate of detecting [prostate cancer] as compared to systematic biopsy (which takes samples from across the prostate)’.
27. Overall, we consider Mr L’s biopsy took enough samples. The area that those samples came from did not reflect the recommendations on first prostate biopsies in the guidelines. However, there is evidence a targeted biopsy was an effective method.
28.We therefore think the targeted biopsy was a suitable investigation, was sufficiently comprehensive in the circumstances, and the Trust acted in line with GMC Good medical practice. There is no failing here. We do not uphold this part of the complaint.
29.We understand this matter is important to Mr L and we hope this gives him some reassurance about what happened.
30.To provide further reassurance, we have seen no evidence the first biopsy missed any areas of cancer. Our adviser explained the second biopsy sampled more areas of the prostate, but the area positive for cancer was the same as first biopsy. We hope this helps resolve Mr L’s concerns.
Issue 2 – confidentiality
31.Mr L is unhappy a doctor referenced his HIV status in a letter to his GP on 16 April 2018, and that a surgeon mentioned it in front of his friend when he was in hospital on 25 May 2018. Mr L says he had already asked staff at the Trust not to disclose this information to others. The Trust said staff were not aware of his requests.
32.We have first considered what the relevant guidelines say should happen in these circumstances.
33.With regards to sharing information with the GP, the HSCIC guidelines say clinicians need to share information about patients to ensure consistent, safe, and effective care. However, only ‘relevant, necessary and proportionate’ confidential information should be shared.
34.The HSCIC guidelines also say: ‘an individual’s decision about particular pieces of information being shared or not being shared within the care team, or with others providing care, should be respected’.
35.There are exceptions to this, for example if there are legal or public health obligations, or if clinicians think it could impact care delivery. We have not seen anything to suggest any such exceptions apply in this case.
36.The GMC confidentiality guidelines say doctors must find out a patient’s wishes concerning information about them being shared with others. The guidance also says doctors should abide by patients’ wishes to not share information with those close to them.
37.We have considered whether the Trust’s actions were appropriate and in keeping with the guidance.
38.There is evidence of Mr L’s request for information about his HIV status to not be shared with his GP in his records on 1 August 2017, 22 November 2017, and 7 March 2018.
39. However, when a doctor wrote to Mr L’s GP with an update about his cancer on 16 April 2018, they listed Mr L’s HIV diagnosis in his medical history. The Trust said the information was not new to the GP, who had mentioned it on the referral to the Trust. We do not think that the GP’s prior knowledge of the HIV diagnosis is relevant. There is no evidence the doctor clarified Mr L’s wishes about information being shared with his GP before sending the letter.
40. Our view is that the Trust should not have mentioned Mr L’s HIV status in the letter. He asked for this information not be shared, and there was no reason the Trust needed to include it. Mr L’s HIV status was not relevant to his care at the time. Furthermore, there were letters about his cancer dated before and after this that did not mention HIV. The Trust therefore did not act in line with the HSCIC guidelines on 16 April 2018.
41. At a preoperative assessment on 4 May 2018, Mr L asked staff not to share information about his HIV status with his GP or people close to him.
42.On 25 May 2018 Mr L was in the surgical assessment unit with his friend before his prostate surgery. The surgeon read aloud Mr L’s medical history, including his HIV diagnosis. The Trust said this was because the surgeon assumed the friend was a relative or partner and already knew, or that Mr L was happy for them to hear this information.
43.Our view is that the surgeon should not have mentioned Mr L’s HIV diagnosis in front of his friend. The surgeon did not establish Mr L’s wishes about sharing information. Instead, they made incorrect assumptions about what he wanted, who his friend was, and what his friend already knew. This was not in line with the GMC guidelines.
44. Overall, we have seen there were two occasions where the Trust did not act in line with the relevant guidance on confidentiality. These were both failings on the Trust’s part.
The impact of the confidentiality failing
45.Mr L says the disclosure to his GP means he is now worried about staff at the practice, who know him outside of work, seeing that information and talking about it with others. He accepts his diagnosis was already included in his medical records. He is concerned about his HIV status being mentioned in recent correspondence that administrative staff would see. He says this makes him feel embarrassment and shame, and he is reluctant to go to the practice as a result. All of this has caused him distress and upset.
46.We understand why Mr L has these worries, and why he is reluctant to be in a position where he will encounter the people he is worried about. We do not doubt these feelings have been a source of distress for him. We note he feels this way because of the disclosure, and he would not be in this position if the disclosure had not happened.
47.Mr L says the disclosure in front of his friend put a strain on the friendship, and it eventually broke down. He is upset he lost an important part of his support system when he was going through treatment for prostate cancer. He is worried his friend has since told other people about his diagnosis, which has been distressing for him.
48.We are truly sorry to hear about this. We cannot verify what caused the friendship to breakdown, or to what extent Mr L’s friend has shared information, but we acknowledge that Mr L feels these things happened because of the disclosure.
49.We consider Mr L would not be in the position of worrying about what his friend did with the information if the disclosure had not happened. It is understandable that this has caused him upset and distress.
50. Lastly, Mr L tells us this experience has damaged his confidence in the NHS and he is worried about further confidentiality breaches happening. He is still a patient at the Trust and these feelings are distressing for him.
51. It is understandable the disclosures have caused Mr L to worry and have affected his confidence in the health service. Trust is an essential part of a doctor-patient relationship, and confidentiality is key to this. We consider the distress he now feels is because of the avoidable disclosures.
52. Overall, we can see the disclosures caused Mr L avoidable upset and distress. We uphold this part of the complaint and recommend the Trust takes action to put things right.
Issue 3 – the discharge from hospital
53.Mr L is unhappy that after the operation to remove his prostate on 25 May, the Trust sent him home on 26 May when he had not had any bowel movements. He says the Trust should have kept him in hospital until he had a normal bowel movement or an enema. He says he ended up going to the emergency department with constipation.
54.Mr L was on an enhanced recovery pathway. According to the NHS, enhanced recovery is an evidence-based approach that helps people recover more quickly after having major surgery. Many hospitals have enhanced recovery programmes in place, and it is now seen as standard practice following surgery for many procedures.
55. The Trust’s enhanced recovery pathway says patients having prostate removal surgery will be discharged home during the afternoon of the day after their operation. It says patients can go home if they are medically stable, eating and drinking, mobile and have a functioning catheter. The pathway does not require patients to stay in hospital until they have had a bowel movement.
56.The surgeon’s post-operative instructions were that Mr L could go home the following day. The Trust provided Mr L with post-operative advice. This explained that he would feel constipated and bloated for a few days but had laxatives to help with this. It told him not to strain to open his bowels.
57. There was no reason the Trust should have kept Mr L in hospital until he had a bowel movement. His discharge was in line with its enhanced recovery pathway. There is no evidence of a failing here. We therefore do not uphold this part of the complaint.
Issue 4 – the Trust’s complaint handling
58.Mr L says the Trust did not provide timely acknowledgements of his complaints and its responses were delayed.
59.The NHS complaint regulations say organisations should acknowledge complaints within three working days of receipt and respond within six months.
60.To comply with the regulations, the Trust’s complaints policy says it will:
· acknowledge complaints within three working days
· confirm with the complainant (either by phone or in writing) the timescale for its response
· provide a written response within 25 working days or an agreed alternative
· negotiate a new timeframe and explain this to the complainant if there are delays.
61. Mr L complained to the Trust on 29 May 2018. The Trust acknowledged this two days later. It did not confirm a timescale for its response. A note in the Trust’s complaint file says the target date for the response was 5 July, but it did not respond within this time.
62. Between August and January 2019, Mr L and his advocate were in touch with the Trust at least once a month asking for a response to the complaint.
63.There were occasions when the Trust did not reply to their contact. On other occasions the Trust could not say when it would provide a response and it could not explain the delays. On two occasions it said it would issue a complaint response within a week but then failed to do so.
64. When it did issue a response in January 2020, the Trust sent it to Mr L’s old address, even though the advocate had provided his new address back in August. The response was then re-sent to his new address and he received it a day or two later.
65. Mr L was unhappy with the Trust’s response to his complaint and promptly sent a follow up complaint letter on 7 February 2019. The Trust misplaced the letter and the advocate had to reshare it on 5 March.
66. The Trust did not acknowledge receipt of the complaint until 1 May, 39 working days later. The Trust said it would respond by ‘the end of June’ but did not. It did not contact Mr L to explain the reasons for the delays or to confirm an alternative timeframe.
67. The advocate contacted the Trust on 30 July. It said it would send a response by the end of the week. The Trust did issue a response by the end of the week but sent it to Mr L’s old address again.
68. The advocate contacted the Trust to chase the response on 20 August. The Trust realised its mistake and sent its final response to Mr L’s correct address on 21 August, more than six months after his follow up complaint.
69. Our view is that the Trust’s complaint handling fell below the required standard. Its complaint responses each took longer than the six-month timeframe set out in the NHS complaint regulations, and it far exceeded the 25 working day target timeframe in its own policy.
70. While the Trust acknowledged his first complaint in a timely two days, its acknowledgement of the second complaint letter was significantly delayed, which was not in line with the NHS complaint regulations or its policy.
71.The Trust repeatedly missed deadlines it set itself and did not (or could not) explain why. This was not in line with its policy.
72.The Trust’s complaint handling was not in keeping with the relevant standards, and we consider this as a failing.
The impact of the poor complaint handling
73.Mr L says the Trust’s poor complaint handling was frustrating and distressing for him, particularly when he was left with unresolved concerns about his care. He said it caused frustration and added to distress he was already experiencing.
74.The aim of the complaint investigation should have been to resolve Mr L’s concerns, so we can see how repeated delays in complaint handling would have been frustrating and we do not doubt that this made his distress worse. We uphold this part of the complaint and are recommending the Trust should act to put this right.
Conclusion
75. We found failings in some, but not all, parts of Mr L’s complaint and we partly uphold it. We found the prostate biopsy on 1 August 2017 was adequate and it was appropriate for the Trust to discharge Mr L from hospital before he had a bowel movement on 26 May 2018.
76. We found failings with regards to the Trust sharing confidential information about Mr L which caused him avoidable upset and distress.
77. We also found the Trust’s complaint handling was inadequate. This caused frustration and added to his distress.