On 25 March the Report on the Enquiry conducted by Lord Penrose on the contamination with HIV and hepatitis C of thousands of people in Scotland through blood and blood products was finally unveiled. The report took six years of preparations and looked at hundreds of thousands of documents, as well as hundreds of testimonies from those who were contaminated, including many people with bleeding disorders. The report only provides one recommendation, which is that the Scottish government should offer hepatitis C tests to people having received a blood transfusion prior to 1991 and who have not yet been tested for hepatitis C.
Following the publication of the report, UK Prime Minister David Cameron gave a public apology to those affected by what has been called the worst treatment disaster in the history of the UK National Health Service (NHS) and stated that an interim fund of £25 million will be set up to offer compensation to those affected by the contamination.
Both The Haemophilia UK and Haemophilia Scotland have been closely following this dossier and have provided information on the report. In particular, Haemophilia Scotland has published an official response with the following recommendations:
Acknowledgment of the disaster and supporting of the victims:
- There should be formal apology,
- A Scottish Settlement for Financial Support should be set up,
- Families, including widows and dependents of those infected must be supported,
- Psychosocial support should be offered to people with bleeding disorders in Scotland.
Securing the safety of the blood supply:
- Blood should never again be collectd in prisons and borstals,
- There should be early adoption of new donor tests,
- There should be full look-back to find the untold number of people infected through a blood transfusion and offer them a test.
The patient at the centre of decision-making:
- Nothing about me, without me:
- All decisions about treatment should be taken by the patient based on professional advice of healthcare professionals.
- Nothing about us, without us:
- No decisions about the healthcare services in Scotland should be taken without patient representation.
- Duty of candour:
- Patients must be advised at an early stage when any potential risk or problems with past, current or future treatments, products are identified.
- Full informed consent for the use of samples in research,
- More research to provide further evidence to the Penrose enquiry when there was simply not enough evidence.
Read Lord Penrose’s statement about the findings and recommendations of the the report.
Read Facts and Figures related to the Penrose Enquiry.