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.
Research:
- 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.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
