On Tuesday 19th July 2011, Catherine Calland, one of the victims of the Bristol Histopathology misdiagnoses gave this powerful presentation to Bristol Health and Adult Social Care Scrutiny Commission. Her story also featured in the Bristol Evening Post 20th July 2011 and Daily Mail 21st July 2011.
Catherine Calland, like other members of the public in Bristol, including Local Involvement Networks, wants answers from the local NHS about the Bristol Histopathology Inquiry:
Why did you not follow your clinical and corporate governance procedures to inform patients and their families when the misdiagnosis concerns were first raised?
Why have you refused requests for a public forum to discuss and try to constructively resolve concerns about the conduct and outcome of the Histopathology Inquiry?
Why do you behave as though you are above public accountability?
Bristol Health and Adult Social Care Scrutiny Commission unanimously supported Mrs Calland’s calls for a public forum.
Robert Woolley, Chief Executive of University Hospitals Bristol NHS Foundation, John Savage, Chair of University Hospitals Bristol NHS Foundation Trust, Ruth Brunt Chief Executive of North Bristol NHS Trust, Peter Rilett, Chair of North Bristol NHS Trust, Deborah Evans, Chief Executive of NHS Bristol and Richard Weatherhead, Chair of NHS Bristol – when are you going to come out of hiding and meet the people you serve? What are you afraid of?
Here is Catherine’s presentation:
1. My name is Catherine Calland
2. I am a victim of misdiagnosis at the hand of the Pathology department of UHBT (University Hospitals Bristol NHS Foundation Trust)
3. Before my media career I was a Nursing Sister and married to a Doctor for many years.
4. History: I had a routine mammogram at the Central Health Clinic in December 2005. I received a recall letter a few days before Christmas. I had a core biopsy at the Clinic in January 2006. I then returned to the Clinic and saw a Surgeon from UHBT. The biopsy was reported as benign. She said there was nothing to worry about as it was just an enlarged lymph node in my breast. When I asked her why I would have an enlarged lymph in my breast she said it was probably an infection through my nipple. I disputed this and said “ I have a bad feeling about this, can you please remove it”. She laughed at me and said I was being hysterical about it! She said it would necessitate using a guide wire. I said I didn’t mind, I just want it in my hand and be told it was benign. Anyway, she refused.
5. One year later, at mammogram, the node was found to have enlarged. I insisted on it being removed and was referred to Frenchay (NBT). In March 2007 I had an excision biopsy which was reported (at NBT) as malignant Lymphoma. I had a CT scan and referred to the Haematology (oncology) clinic
6. Surely this demonstrates the importance of listening in accurate diagnosis.
7. When the first biopsy was re-examined at NBT it too was found to be malignant Lymphoma.
8. I was not told of the error
9. I discovered later that the node was described as ‘reactive’. Now, we all know that best practice recommends that patients with reactive nodes require regular medical follow up. I did not
10. At my first appointment with a Consultant Haematologist I asked if it was possible that the first biopsy report was wrong, I was told no. I was asymptomatic at the time
11. I was referred to the Oncology centre at UHBT for Radiotherapy to my left breast, axilla and supra-clavicular region
12. I then became very ill with distressing symptoms. A CT scan revealed that the Lymphoma had disseminated and progressed from Stage 1 to Stage 3
13 I was not told of the error in diagnosis.
14. The first I knew about the error in diagnosis was when I received a letter from Dr C Burton (NBT) North Bristol NHS Trust Medical Director a few days before the report of the Inquiry into the Histopathology errors at UHBT was to be published
15. I telephoned Dr Burton and asked him why I was not told of the error in my diagnosis. He replied “they probably thought it was not in your best interests to know”
16. I find this both patronising and insulting and an infringement of my human rights
17. My attitude is: It is not the mistake but what you do about it that matters. I would say to all Doctors involved in the treatment of patients that an open and candid exchange can reveal surprising understanding
18. After some digging I discovered that no immunohistochemical analysis was done on my first biopsy. Nor was it double reported as is recommended by RcPath (The Royal College of Pathologists).
19. After consultation with my family, who are well qualified to understand the goings on here, the conclusion is:- This is an error that just might be acceptable in a District General Hospital but definitely not in a University Department designated a tertiary referral centre for cancer
20. I have also discovered that Drs Burton and Sheffield (former UHBT Medical Director) decided between themselves that patients need not be informed unless “THE REPORT” found that the error rate to be greater than 1-2%. Now an error rate for UHBT of just 1% is 180 cases per year – that is benign versus malignant. Is that acceptable to the Council and the people of Bristol? It jolly well isn’t to the victims
21. It transpires that the victims were only informed because a senior Consultant threatened to go public
22. We, the victims, want sunlight and transparency in the Trusts dealings with patients but all we have had so far is lies, subterfuge and cover-up
23. Robert Woolley ( CEO UHBT) in a letter stated – “Any individual, professional or public, with concerns about histopathology services in Bristol – or about the process by which concerns had been identified for the purposes of the Inquiry – had the opportunity to give evidence confidentially to the Inquiry panel. The Inquiry was widely publicised inside and outside the two hospital Trusts to allow this to happen”
24. Why then was it not publicised to the patients and relatives whose cases had been selected for review
25. By not informing us, the victims, they denied us our democratic right to seek our own Expert Opinions
26. One does not have to be a cynic to think that by denying us our right to these opinions makes us more manageable
27. The Department of Health Clinical Outcomes Group and the RcPath working group recommends that: Histopathology laboratories nominate a lead Pathologist for each of the main cancers – liaising with local committees and clinicians and ensuring that the relevant cancers are examined, sampled and reported appropriately and in a consistent fashion. Also Histopathologists, reporting cancers, should participate in appropriate EQA (External Quality Assurance) schemes
28. On Lymphoma they say that – Immunostaining allows the T(14:18) translocation represented as a ratio between the quantities of target gene Bcl-2 and the control gene Ki-ras to catch the lymphoma in its earlier more curable stage. I am sure Councillor Naysmith will understand the significance of this. http://en.wikipedia.org/wiki/Doug_Naysmit
29. In the course of time the Consultant Haematologist I saw was forced to resign over a significant error. I then had a new consultant. At my first appointment he said “ we are going to have to take a good look at your lymphoma as I would have expected the radiotherapy to be curative. I then showed him the letter – about the error in diagnosis – he looked very uncomfortable and did not comment!!!! He never mentioned it again.
30. In the Sheffield/Burton table both medical directors say of my case:—- “Significance of delay in diagnosis of 1 year in this condition uncertain. Patient aware of delay but not certain if any implications discussed. Has subsequently developed disseminated disease” and concluded “No outstanding issues”.
31. NO OUTSTANDING ISSUES!!! Has Dr Burton no empathy??????????? How can he conceive of the pain and distress caused to me and my family? How can he measure the distress of the cover-up? How can he measure the inconvenience of being ill, sometimes severely, for five years? How can he measure the effect of this on my family
32. It has been brought to my attention that UHBT set up four UHBristol patient focus groups to “explore current awareness and future involvement in the on-going development of histopathology at UH Bristol.
33. Why were patients and relatives affected by the misdiagnoses, including parents of the paediatric cases, excluded from that group and deprived of contributing their experiences to help develop a better histopathology service for Bristol
34. I know that NHS Bristol, NBT and UHBT have rejected a request from local people for a public forum to discuss serious concerns about the conduct and outcome of the histopathology Inquiry
35. As a patient, who has been harmed, I share these concerns and have to say that I have no confidence in organisations, who refuse to be held accountable to the public for their past failings, or that they can be trusted to deliver a future safe, high quality service
36. As elected representatives, you the councillors, have the power to make it clear to the NHS that you expect them to meet members of the public to discuss their detailed concerns.
37. I ask you now - When are you, the Councillors, going to exercise that power?