We encourage you to share your story with the Infected Blood Inquiry. It is essential that those infected have their voices heard in this Inquiry.
Since the preliminary hearings in September 2018, the Society has received an increasing number of calls.
Below is some information explaining the importance of your contribution to the Inquiry and how to do it.
WHAT IS THE INFECTED BLOOD INQUIRY?
The Infected Blood Inquiry is a UK Public Inquiry launched to investigate why infected blood products were being used to treat NHS patients prior to 1992. Between the late 1970s and early 1990s, thousands of haemophiliacs and those in need of blood transfusions were treated with blood plasma donated from high risk sources, including from the prison population in the United States, but the potential risks before that will also be considered.
The Inquiry aims to establish what kind of support was provided to patients following infection and the impact caused on the families of those infected. The investigation will look into the response of the UK government, NHS bodies and/or other medical authorities, industries, charities and others to consider why medical records went missing, with the aim of establishing whether there was any intended cover-up.
The Inquiry is UK-wide and will consider issues both regionally and nationally.
PRELIMINARY HEARINGS AND TERMS OF REFERENCE
The Infected Blood Inquiry undertook three days of preliminary hearings, starting with a commemoration for those that are known to have died, on Monday 24th to Wednesday 26th September 2018, at Church House in Westminster, London. Sir Brian Langstaff, Chair of the Inquiry, pledged to put individuals at the heart of the Inquiry, and highlighted the importance of listening to core participants and any witnesses wishing to provide evidence. He recognised that those infected and affected are still suffering the consequences today and thus the Inquiry ought to be efficient, thorough and transparent in its investigative process.
The Terms of Reference describe the matters a public inquiry is allowed to examine. They are the result of a public consultation to which many who were directly affected, as well as relevant organisations, were able to share their contributions. The key issues outlined in the Terms of Reference are as follows:
1) To understand what happened and why people were given infected blood.
2) Establish the scale of what happened, including the likely numbers of people who have been infected and affected, and whether in addition to the HIV, hepatitis C and hepatitis B (HCV and HBV viruses with which it is known that people were infected, and who might have been exposed to other diseases.
3) To consider the impact, including the mental, physical, social, work-related and financial effects of living with viruses. This includes the impact of these infections on families.
4) The response of Government (in particular the Department of Health), NHS bodies, other public bodies and officials, the medical profession, the UK Haemophilia Centre Doctors’ Organisation, the pharmaceutical industry and other organisations (including the Thalassaemia Society).
5) Review key ethical issues around consent and what information was provided to people about the risks, diagnosis and treatment options.
6) To understand the communication, information sharing and the response of the government, the NHS and others within the medical profession.
7) Conclude whether there was a lack of candour and openness with treated patients, and as a result whether there existed a potential cover-up.
8) To determine whether any individual responsibilities as well as failures in organisational systems and structures.
9) Provide recommendations for the future. Aware of the continued effects of the infected blood products, the Inquiry team has said it will provide interim recommendations as soon as practicably possible.
You can read the full Terms of Reference here.
The preliminary hearings were a chance to listen to core participants, including the legal representatives of those affected and of course, individuals who will be representing themselves.
As a core participant in the Inquiry, The UK Thalassaemia Society gave an opening statement. The hearings also included statements from other charities and relevant government organisations, including the Department of Health and Social Care, and other relevant NHS medical groups, such as NHS Blood Transplant Service (NHSBT), that have been appointed as core participants.
HOW CAN I SHARE MY STORY?
The Inquiry is requesting any further witnesses complete a short form so that they can establish how many people are interested in providing evidence. The Inquiry will not ask you to provide any evidence at this stage and information on next steps will be shared by the Inquiry team on their website.
Witness statements from infected and affected people are scheduled to start on the 30th April 2019 in London.
The Inquiry team has suggested that it is very interested in hearing first-hand accounts and experiences from people across the UK. The Inquiry confirmed that evidence will be heard in London, Edinburgh, Belfast, Cardiff and probably Leeds.
Prior to the preliminary hearings the Inquiry team organised a number of engagement meetings in Belfast, Birmingham, Bristol, Cardiff, Glasgow, Leeds, Liverpool, Manchester, Newcastle and London.
REQUESTING YOUR MEDICAL RECORDS
It is important to remember that you do not need to have your medical records in order to provide a statement. The Inquiry team understands that some of those infected and affected may be unable to access their records. However, medical records might prove to be useful supporting information so we encourage you to try and locate these records if you can.
Information on how to access your medical records, or accessing someone else’s record or the records of a deceased family member can be found on the Infected Blood Inquiry website here.
Please note that the Inquiry team has confirmed from all NHS Chief Executives that all fees that would normally be charged to access medical records are lifted for the purpose of providing correct evidence to the investigation.
ACCESS TO LEGAL SUPPORT
It is not necessary to have a legal representative to be a witness or core participant in the Infected Blood Inquiry.
However, having legal assistance can help you through the Inquiry process and can assist in preparing your evidence. Please contact us if you need further information on this.
UK THALASSAEMIA SOCIETY AS A CORE PARTICIPANT
The Infected Blood Inquiry has the largest number of core participants of any public inquiry. However, you do not need to be a ‘core participant’ to provide a witness statement. Any witness that has been infected or affected by blood products is welcome to come forward to give evidence.
Roanna Maharaj, on behalf of the UKTS, spoke at the preliminary hearings. Our role as core participants will be to provide supporting evidence to the Inquiry team based on statistics and common facts drawn out by the numerous calls to our helpline over the years.
The documents which the Inquiry sees as relevant will all be available to all core participants
A full list of all core participants to this Inquiry can be found here.
For any further information or assistance, please do not hesitate to contact us on: 0208 882 0011 or by e-mail. We can also provide guidance on making claims to the various infected blood support schemes people are eligible for.
The Infected Blood Inquiry is also providing confidential psychological support offered by the British Red Cross to anyone affected by issues raised during the Inquiry.
Further information can be found on the Infected Blood Inquiry website.