Scottish Government takes action to find #ContaminatedBlood missing cases

Penrose Publication

The Penrose Inquiry into the infection of people with Hepatitis C / HIV from NHS treatment was published its Final Report on March 25, 2015.

Lord Penrose made just one recommendation that,

the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV

In response, the Scottish Government asked Health Protection Scotland to establish a that a Short-Life Working Group to bring forward recommendations about what practical steps could be taken to implement the recommendation from the Inquiry.

Today, the Scottish Government has published the report it received from the Penrose Short-Life Working Group and issued a press release.

The group unanimously made three recommendations,

  1. Delivering a targeted awareness campaign focused solely on individuals who received a blood transfusion pre-September 1991. This awareness campaign should aim to reach all targeted individuals through the use of (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognize that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.
  2. The identification and written offer of an HCV test to a group (up to 71) of plasma product factor recipients who are as yet not known to have been HCV tested. 
  3. A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase (ALT) liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.

All three recommendations of the Short-Life Working Group are being implemented by the Scottish Government, with work already well underway.  The public awareness campaign, for example, is due to be launched later this month.

 

Shona Robison in the Scottish Parliament

Image by © Ken Jack/Demotix/Corbis

Cabinet Secretary for Health, Wellbeing, and Sport, Shona Robison MSP has said,

…I have today accepted all these recommendations to ensure that everything possible is done to find people who may have been infected and offer them the best care and treatment. …I would urge anyone who thinks they had a blood transfusion before September 1991 to seek advice from the Hepatitis helpline or their GP practice about a test if they have not yet done so.

Haemophilia Scotland CEO, Dan Farthing-Sykes, who served on the group said,

Perhaps the most surprising recommendation to the bleeding disorders community in Scotland will be Recommendation 2.  The names referred to were uncovered by the look-back exercise conducted by the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) on behalf of the Haemophilia Alliance.  They are individuals who are thought to have received treatment in a Scottish Haemophilia Centre during the relevant period who have been lost to follow-up. These efforts to find them are vital both in terms of their likely infection and the proper care of their bleeding disorder.

I know contaminated blood campaigners will be also be interested that the statistical work conducted as part of this process.  That work concluded that ‘the number of [living] undiagnosed HCV-infected people, having acquired their HCV in Scotland as a result of blood transfusion pre-1991, is within the range of 0 and 63’.  In fact, it is thought to be as low as 32, once those who have been diagnosed in other ways are taken into account.  This in stark contrast to the figures of tens of thousands across the UK which have been suggested in the past.  Those higher figures have often been given as a reason that the levels of financial support couldn’t be at set at more appropriate levels.

More information

The full report and the data supporting it can be found on the Scottish Government website.

The Scottish Government have also issued a press release with further information on the implementation.

7 comments

  • Why are UK Haemophiliacs who can prove the use of Scottish clotting factor, and have been infected with HCV, being denied the better deal offered in Scotland.?

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  • It was looked at in the Financial Support Review Group, largely from the point of view of those who were infected in England but have lived in Scotland for a long time. They were, understandably, suggesting moving to a residency requirement rather than going by the location at the time of infection. This led to a wider conversation about how people should be divided between schemes.

    In theory there three main ways you could do it. Where do you live now? Where were you infected? Where was the product made which infected you?

    At the moment the Skipton Fund and Caxton Foundation bills are divided up according to where someone was infected. My understanding of the legal advice is that if the new schemes changed that then they’d be open to legal challenges from those who lost out as a result.

    The implication of your comment is that you are suggesting is that entitlement to the scheme should be where the infectious product was manufactured. In Hep C cases that would be where the first pool plasma product you received was produced So even if that approach was taken it would only be those whose first pooled plasma product was Scottish that would have got the Scottish payments. Do you have a sense of how many of those in England who have received Scottish product had it as their first treatment? I haven’t seen any figures on that.

    Had the decision been to go with where the infectious product was produced then some sort of additional arrangement would be needed to deal with the people whose medical records are incomplete, as they don’t know which product infected them. There would also be difficulties for those infected by commercial products. That approach would have risked damaging the interests of the children who were infected at Yorkhill in Glasgow as there was a higher than average use of commercial products there.

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  • Soo when after all the years and apologise is the compensation going too be paid too haemophiliacs ????

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  • Hello Paul,

    Unless liability can be established then “compensation” isn’t an option. We’ve been talking to the Scottish Government about what they can do to fulfill a moral responsibility to infected people and their families. Compensation would involved establishing liability and people being paid the money they can show they have lost as a result of the infections.

    In terms of the new support payments. We were hoping those at Stage 2 of the Skipton Fund or receiving the ongoing payments from the MFT will get the new higher payments in October. This deadline isn’t signed off by the boards of the Alliance House organisations yet and will depend on their capacity to make both the Scottish and English changes as the same time. Before those payments can be made tax orders need to go through Westminster and the Welsh Government and Northern Irish Executive will need to state they have no objections. The increased Stage 1 payment should take effect at that point too. We are still pushing for October but there has been some talk about it being later in the autumn if it takes a little longer to get everything in place. The ongoing payments should be backdated from 2016.

    The rest of the payments will only come in for Scotland once the new Scottish support scheme is set up. We are expecting that to be in April 2017. This is when the new widow(er)s pension will start for example.

    I hope that helps,

    Dan

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  • I had blood transfusions Nov 1975 4 pts befire and 4 after the birth of my son also again in February 1979 I have bee n I’ll for long time now have some kind of liver cysts found accidently I suffer a lot of pain my married name then was Agnes Watson I I’ve in Angus road greenock and birds were at ranking memorial hospital greenock I would be obliged fir any help possable

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    • Hello Agnes,

      It sounds like you received blood in during the period when there was a risk of contracting Hepatitis C. If you haven’t been offered a hepatitis C test already (one might have been suggested when those liver cysts were found) then you should talk to your GP about having one. I will email you privately too to offer more support.

      Dan

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  • Please help ages mchee was known then as Watson have all kinds of organ body pain new nothing about blood contamination had 4 and then another four full bloods Nov 7again Feb 79 csnt rember but one other other time to lived in Oz for a while to been suffering badly for last 9and half years almost every cell in body not right always in pain liver pain to please csn you help I’ve also filled this in last week symtons not on records and having probs eith health board because if bad communication I think ages mcghee 01461 758642

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