Implementation of second recommendation of the Penrose Short Life working group: FOI release

Information requested

With regard to the implementation of the second recommendation of the Penrose Short Life Working Group, you asked for:

1. How many individuals were traced; and how many could not be traced?

2. How many of those traced were alive and how many had died?

3. Of those who had died, what were the causes of death?

4. How many of those deaths were,

a. Prior to February 2000

b. Between February 2000 and 2016

c. Since 2016?

5. How many of the bereaved families were referred to the Scottish Infected Blood Support Scheme (SIBSS) and how many are now receiving support from SIBSS?

6. How many surviving individuals received a written offer of an HCV test; and how many were offered a test in another way?

7. How many of those tested were found to have been infected with HCV?

8. How many of those who tested positive were referred to the Scottish Infected Blood Support Scheme (SIBSS) and how many are now receiving support from SIBSS?

Response

1. Based on the information we received from Health Protection Scotland (HPS) in 2018, of 69 patients whose status was investigated as a result of the Short Life Working Group recommendation, 33 patients were traced by CHI linkage analysis, and 36 could not be traced.

2. Of those traced, 20 were alive and 13 had died.

3. The Scottish Government does not have any information on this. This is a formal notice under section 17(1) of FOISA that we do not hold this information. You may wish to contact Public Health Scotland (of which HPS is now part) to see if they have any information on this, although from the information provided, it is not clear that they accessed any information about causes of death.

4. The Scottish Government does not have this information, but the information from HPS suggested that most of the deaths occurred prior to 1991 and that it was unknown whether or not those who had died were infected with hepatitis c (HCV).

5. The Scottish Government does not have any information on this. This is a formal notice under section 17(1) of FOISA that we do not hold this information.

6. 9 letters were issued to patients’ GPs. 8 patients were contacted, one was found to have moved outside of the UK. Note an additional one of the patients identified as being in England was having testing arranged for them at the time that HPS provided information to the Scottish Government. In addition, seven of those identified as living in Scotland had already, in the interim, been identified as being HCV negative and four of those identified as living in England had also already been tested for HCV.

7. Of the 8 patients tested following letters to their GPs, 1 tested positive for HCV.

8. The Scottish Government does not have information on this. This is a formal notice under section 17(1) of FOISA that we do not hold this information.

Further to your questions, you note that you would be interested in any related information about those infected with hepatitis C as a result of blood transfusion as a result of the recommendations of the Penrose Short Life Working Group. I attach a paper on evaluation of the impact of media coverage of publication of the Penrose Inquiry report and the awareness raising campaign on HCV testing among blood transfusion recipients.

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FOI202100168675 - Information released

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