C complained about the care and treatment provided to their spouse (A) during the period August 2018 to June 2019. A had been diagnosed with primary biliary cirrhosis (PBC, a disease that harms the liver’s ability to function) in 2004 and was under the observation of gastroenterology (the branch of medicine focused on the digestive system and its disorders) for the condition. In June 2019 A was diagnosed with cholangiocarcinoma (a type of cancer that forms in the tubes connecting the liver with the gallbladder and small intestine). They died a short time later.
C complained that from 2018 onwards there were delays in diagnosing A’s cancer and, that had A been diagnosed and received treatment earlier, this may have led to a different outcome. C also complained that the Board’s communication with A was unreasonable, particularly that: A was not made aware cancer was a possibility; they were reassured that results were not sinister which minimised their concerns; and the results of the biopsy were not communicated with A.
The Board said that A did not show any signs of advanced liver disease. When an ultrasound scan showed abnormalities further investigations were carried out, however, a diagnosis could not be established until a liver biopsy was obtained and reviewed by specialists. The Board acknowledged a delay in the liver biopsy being taken, they apologised for this and assured C that they would take learning from the complaint.
The consultant involved in A’s care acknowledged that it would have been better to have kept A informed and apologised for this. The Board explained that the results of the biopsy were sent to a different consultant in error and the report was not forwarded timeously. The Board apologised for the unacceptable delay in updating A with the results of the biopsy.
We sought independent advice from a consultant hepatologist (the Adviser). The Adviser told us that A’s PBC was not well controlled and A developed signs of disease progression. A reasonable time to carry out investigations would have been 12 weeks, however, it took the Board 27 weeks to carry out the necessary investigations (not including the further delay in receiving the biopsy report). The Adviser noted that it appeared from the documentation that the possibility of cancer was not communicated well enough. In conclusion, the Adviser said that it is possible A’s quantity of life would have been better, and therefore, A could have lived longer if the diagnosis had been made earlier.
In light of the evidence we have seen and the advice received, we found that: the care and treatment provided by the Board before and leading up to the diagnosis was unreasonable; and the Board failed to reasonably communicate with A and they should have told A much earlier that the tests being carried out were for cancer. As such, we upheld C’s complaints.
Redress and Recommendations
The Ombudsman's recommendations are set out below:
What we are asking the Board to do for C:
| Complaint number |
What we found |
What the organisation should do |
What we need to see |
|---|---|---|---|
|
(a) |
Under (a) we found the Board failed to:
Under (b) we found the Board failed to communicate reasonably with A and A’s GP. |
Apologise to C for the failure to:
The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets. |
A copy or record of the By: 22 July 2022
|
We are asking the Board to improve the way they do things:
| Complaint number |
What we found |
Outcome needed |
What we need to see |
|---|---|---|---|
|
(a) |
Under (a) we found that the Board did not identify that A was showing signs of advanced liver disease in 2017, and unreasonably failed to initiate further investigations (an ultrasound scan) at that time. |
Patients showing signs of advanced liver disease should receive appropriate care and treatment that is in line with relevant guidance. |
Evidence my findings have been shared with relevant staff in a supportive way for reflection and learning. Reflecting the passage of time, evidence that the Board now have appropriate guidance for staff which takes into account the relevant national guidance for treatment of advanced liver disease and that clinicians are aware of the guidance. If not, the evidence of the action taken to rectify this. By: 22 September 2022 |
| (a) | Under (a) we found that the Board failed to examine A in 2018 and ensure further investigations were carried out urgently. |
Patients presenting with symptoms as in A’s case should be examined and have further investigations carried out urgently. Cancer trackers should be utilised early in cases like this (where a lesion on the liver is a possible cancer) to avoid delays. |
Evidence that my findings have been shared with relevant staff in a supportive way for feedback and reflection. Evidence that consideration has been given as to whether guidance is required for the management and reporting of liver biopsies. This should take into account relevant national guidance and the evidence should demonstrate that clinicians are aware of the guidance. Evidence that the Board have an adequate tracking system in place when cancer is suspected, to avoid delays like this happening again. By: 22 September 2022 |
| (b) | Under (b) we found that the Board’s communication with A, particularly around the reasons for surveillance investigations and that cancer was a possibility, was unreasonable. | Patients should receive clear explanations for any investigations proposed or carried out and should be provided with appropriate information about their condition, including where cancer is a possibility. Where discussions have taken place, this should be documented. |
Evidence my findings have been shared with relevant staff in a supportive way for feedback and reflection. Evidence the Board have reminded relevant staff that patients should be informed about the reasons for screening scans in good time. By: 22 September 2022 |
| (b) | Under (b) we found that A’s GP should have been written to about pain relief and arranging palliative care rather than copied in to correspondence regarding this. | GPs should be contacted directly about care to be organised by the GP practice. |
Evidence that my findings have been shared with relevant staff in a supportive way for feedback and reflection, and a note of any actions or changes as a result. By 22 August 2022 |
We are asking the Board to provide evidence of action they have already taken:
| Complaint number |
What we found |
What the organisation should do |
What we need to see |
|---|---|---|---|
|
(a) |
Under (a) we found that there was an unreasonable delay in the liver biopsy results being made available to Consultant 1. |
Clinicians should receive biopsy results within an appropriate timescale. |
Evidence of the discussions already held with radiology staff to highlight the importance of forwarding results to the referring clinician immediately, and a note of any actions or changes as a result. By: 22 July 2022 |
Feedback
Points to note
We are sharing this with the Board in the spirit of reflective learning to drive service improvement.
The Adviser considered A’s PBC was not well controlled with fluctuating alkaline phosphatase. A developed signs of potential disease progression (spider naevi), an additional risk factor for liver cirrhosis (diabetes) and had weight loss. The Adviser highlighted that, in their view, the management of A’s condition earlier in the disease could have been better if A had been followed up by a consultant with liver interest (and liver nurses as part of a liver team).
The Adviser also highlighted that it is good practice to copy all communication (i.e. clinic letters to other specialists, GPs etc.) to the patient for improved patient communication. The Board may wish to note this and refer to the ‘please write to me’ guidance on writing out-patient letters.
We encourage the Board to consider this feedback carefully to inform whether changes are required to the way in which they manage similar patients in the future.