Birmingham Haemophilia Centre Overview and Professor Ian Franklin, Director of Queen Elizabeth Haemophilia Centre
Birmingham Haemophilia Centre
QC Jenni Richards started the day with an overview of the provision of haemophilia treatments at the Birmingham Haemophilia Centre, which included both the Children’s Hospital and the Queen Elizabeth Hospital.
From the early 1970’s there were issues with insufficient supplies of cryoprecipitate for treatment across the West Midlands area and the issue of buying in commercial products started to be raised. By the latter part of the 1970’s these were increasingly used, in keeping with the nationwide move towards them due to the lack of self-sufficiency.
Cryoprecipitate was used for home treatments and some time was spent illustrating the detailed instructions for the not inconsiderable preparation and delivery of this in a home setting. Patients had to be trained to administer it themselves until they were considered “expert”.
Up until 1978, this continued to be used in the home setting and for surgeries along with smaller amounts of NHS Factor 8 at the QE and at the Children’s Hospital by 1981. The commercial products supplied from Armour were increasingly used, in part it would seem from a cost issue, continuity for patients, that it was considered a “cleaner” product that that from other suppliers and that the home treatment packs were thought to be better. From 1985 heat treated products started to be used. By 1988, no cryoprecipitate was used, only heat treated Factor 8 (NHS and also commercial products) and DDAVP.
There was a detailed examination of the changes to the treatment provided at the time to haemophiliacs and the thinking amongst different doctors at the various centres at the time and also on how information was passed on to patients in these centres.
Professor Ian Franklin
Professor Franklin had a varied career working at different hospitals, London, St Albans and also in Glasgow.
He was specifically being questioned however about his time at the Queen Elizabeth Hospital in Birmingham, where he was first a consultant haematologist starting in 1982 and then later the Director of the Haemophilia Centre until July 1992.
Prior to that in 1981 he trained in blood transfusion medicine at theNorth London Regional Transfusion Centre in Edgware and was asked what knowledge he gained for Non A Non B during his time there. “I think there was some. I mean, I have to say outside the world of haemophilia, I would say even in general haematology, there was probably a lack of appreciation of the level to which blood transfusion red cells and so on could transmit non-A, non-B hepatitis … generally there was a feeling that it was something that largely happened in the United States because of paid donors and that the volunteer donor base in the UK was much safer”.
He had a wide variety of roles including working with sickle cell and bone marrow transplantation and continuing training over the years, but by his own admission he was “inexperienced” in haemophilia and took guidance from colleagues, papers, journals, books, reports and meetings.
A benign disease?
However, despite ever increasing reports of the potential seriousness of non-A non-B hepatitis as time went on, he described an ongoing atmosphere of a lack of knowledge about it and the persistent belief that it was a relatively benign disease. Indeed, Dame Sheila Sherlock, a pioneer in hepatology services had written a book that Professor Franklin referred to during his time there for knowledge on liver disease and it described “Non-A, non-B hepatitis often progresses to a mild chronic hepatitis. The prognosis of this is, at the moment, uncertain but probably benign.”
He reflected on this and said “I think this is sort of showing that – to be honest, I would interpret this as uncertainty from someone who is the world expert not really knowing what’s going to happen, to be honest, and I think also when we look back… even she hadn’t got a long enough longitudinal experience of a disease that can take 15/20/30 years to destroy someone’s liver”…
But it was following a paper by Hay and Preston in Sheffield in 1985 that he became more acutely aware that Non A Non B was an increasing threat and that clinics were seeing many patients with liver problems. At the time, however, he noted that there was some confusion as to whether that was connected with HIV and, as we keep hearing, this was considered the overriding threat at the time.
There were several studies that the Inquiry drew on to illustrate that liver disease was reported on and showing in many haemophilia/transfusion patients.
Jenni Richards C asked “In terms of the 1985 Hay/Preston research, would you accept that that wasn’t something which showed something radically new or different, it was rather perhaps confirmatory of earlier fears…”
He responded, “Yes. Well, I think it was the final – yes, the final sort of straw that, as it turned out, maybe it wasn’t all hepatitis C, but what it definitely meant was that we were going to see a lot of bad liver disease in that group of men who were having those concentrates before effective heat treatment”.
A lack of guidance for centre directors
The Inquiry had shared with him many notes of meetings held by United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) that contained useful information about both hepatitis C and HIV that he had never been privy to at the time as they were not circulated to all members. Despite QE2 being the 5th largest centre in the UK, it was poorly resourced generally and as it wasn’t a reference centre, he described a continual scene of little or no guidance or authority, on how to tackle issues around hepatitis and HIV.
“It would have been good to have had some more direct — well, instruction or central advice rather than – there’s a lot of discussion in all of these notes about, you know, individual directors should decide. Well, I was an individual director but I wasn’t very experienced, and actually neither was Mark (Dr Mark Winter, a fellow consultant haemotogist and haemophilia centre director), at that time, and I think we both would have benefited from something a bit more forthright as to what to do. Even whether it was right or wrong, that would have been helpful.
I think I’ve come to be not that happy about the UKHCDO, to be blunt, as someone who was in a very large haemophilia centre that was not a reference centre and a lot of the minutes and the notes that you and your colleagues have provided come from subgroups of the reference centres’ directors. They contained far more useful information than the annual meeting of the UKHCDO.
I don’t remember seeing those minutes. I don’t think those minutes were circulated to the rank and file, if I can say. I think that was a shame because they are far more useful than the two meetings I went to…they would have been very helpful. So I’m sorry we didn’t get to see them (HIV) or the hepatitis ones, we didn’t get to see those. So I do feel a bit sad on behalf of the patients at the Queen Elizabeth Hospital that we didn’t get enough advice. You know, there was more to be had, I think, and I think it would have been, it was never going to be easy, but it would have been better. So definitely… if there’d have been more advice… I don’t think it necessarily had to be the CMO but something definitive as to what we should do”.
Professor Franklin’s evidence continued into the following day. You can watch the hearings here and here.
Soon after this hearing was held, as a result of the current lockdown restrictions, personal attendance at the hearings was stopped. They can all be viewed live online however and the latest timetable for forthcoming hearings is here.
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