Haemophilia home therapy patients treated ‘in a bit of a crisis’, says professor

Haemophilia patients on a home therapy programme in Scotland were being treated “in a bit of a crisis”, an inquiry has heard.

Professor Christopher Ludlam, appearing remotely, told the infected blood inquiry on Tuesday he had to temporarily pause putting more people on the treatment in the early 1980s because of supply difficulties.

The professor was a consultant haematologist and reference centre director at the Royal Infirmary of Edinburgh from 1980 to 2011.

He described the treatment situation as slightly different from England, saying there were regional haemophilia centres in Edinburgh, Dundee and Inverness, as well as those at Glasgow Royal Infirmary and Glasgow Children’s Hospital at Yorkhill.

Ward 23 at Edinburgh was an inpatient ward that Prof Ludlam said had patients with “severe haemophilia”, which he described as a “dreadful condition and it led to great uncertainties in the patients’ lives”.

If sufferers started to bleed they would have to wait at home for an ambulance to take them to hospital, with some untreated bleeds lasting “10 days or so”.

He also told the inquiry they received patients from as far as Berwick-Upon-Tweed and parts of the Borders, as well as some in and around Glasgow who had family in Edinburgh that could visit.

The haemophilia centre also had a suite of rooms at the entrance of Ward 45 that involved “minimal costs”.

A home therapy programme was introduced in 1980 when Prof Ludlam arrived at the hospital, which increased the number of participating patients from six to about 40 to 45 in 1983.

The inquiry was shown correspondence with a Dr Bolton, deputy director of the blood transfusion centre in south-east Scotland, from 1982 about the allocation usage for haemophilia home therapy patients.

A comparison of blood products used at Edinburgh Haemophilia Centre showed that in 1979 cryoprecipitate accounted for 78% of products used, with factor concentrate 22%. By 1984 this figure had risen to 91%, with cryo making up 5% of products used. #InfectedBloodInquiry

— The Haemophilia Society Public Inquiry Team (@HaemoSocUK_PI) December 1, 2020

Prof Ludlam said: “I think this reflects very well the difficulties the blood transfusion service were under in being able to supply constant Factor VIII concentrate to me for patients.

“(With) the pressure I was under from the patients who were very keen indeed to have a home therapy, which was commonplace in in the rest of the country, I did my best to do fulfil that request.”

A table shown to the inquiry indicated that in 1979, the amount of cryoprecipitate used was 94,190 units – 78% – compared with 22% of the Factor VIII concentrate, which was also used.

In 1984, the figure for cryoprecipitate had gone down to 139,000, representing just 5% of product usage, while the Factor VIII concentrate accounted for 91% and just over two and a half million units.

Prof Ludlam highlighted “difficulties in the supply arrangements in the early 1980s from PFC (Protein Fractionation Centre)”, to which Jenni Richards QC asked: “Did you try to use maximum use of the cryoprecipitate, not put further patients on home therapy, not put patients on the cold operating lists and counsel your patients to use less?”

He replied: “Not try to counsel the patients to use less because the doses that were being used for home treatment of leads were put in minimal doses, and then perhaps a quarter of what one would use nowadays.

“I can’t remember, I’m sure I had a pause in putting more patients on home therapy because when Dr Bolton wrote this letter there was clearly a bit of a crisis.”

Opening today's hearings, Inquiry Chair Sir Brian Langstaff said:

"For this week and next the Inquiry will be turning its spotlight on clinicians who worked in Edinburgh and Glasgow.

"This is a UK wide Public Inquiry.' pic.twitter.com/tW3bFli9C9

— Infected Blood Inquiry (@bloodinquiry) December 1, 2020

Thousands of patients were infected with HIV and hepatitis C via contaminated blood products in the 1970s and 1980s.

About 2,400 people died in what has been labelled the worst treatment disaster in the history of the NHS.

Scotland was the first part of the UK to hold a public inquiry into the scandal, but this did not take place until 2009 and did not report until 2015.

It estimated about 3,000 people were infected in Scotland.

The inquiry, before Sir Brian Langstaff, continues.