The Haemophilia Society has campaigned for a public inquiry into the contaminated blood scandal for more than 30 years. Now that the Infected Blood Inquiry is finally happening, it is vital that its investigations are thorough and painstaking so that the affected community can find some level of closure and peace from its outcome.
This is what we believe must result from the Infected Blood Inquiry:
Truth and justice
- Full exposure of who knew what, when and a clear understanding of what motivated the decisions made
- Those shown to be responsible must be held to account, if appropriate through further legal action
- An acknowledgement of the pain and hurt caused by this scandal
- A thorough and credible investigation which gives the community confidence that the truth has been uncovered
- A Government-funded national memorial established as a permanent tribute to those who died
- A meaningful Government apology
- The infected and affected must be properly financially compensated for the effect that receiving infected blood has had on their lives, including lost opportunities
- Compensation should be based on the financial, psychological, physical and social impact the infections have caused
- Work should begin now, before the end of the inquiry, through the Cabinet Office in consultation with the affected community, to establish a framework for awarding compensation
- There should be no delay in distributing compensation once the inquiry completes its investigation and publishes its findings
- Until compensation is paid, there must be fair and equal funding through the UK’s four infected blood support schemes, eligibility should be widened to include bereaved parents and children.
Those infected and affected should be entitled to free, accessible, long-term, specialist psychological support for as long as they need it.
Continuing care for those infected
- A clear set of national guidelines must be established on best-practice for monitoring chronic hepatitis C patients. This should include regular scans and regular follow-up appointments
- Funds must be made available to support those infected with HIV. There is very little research on the long-term impact of early HIV treatments, especially when coupled with harsh hepatitis C treatments. This is a unique community which needs specialist medical support and understanding
- Access to insurances, including life cover, at fair and equitable rates
Future care for people with bleeding disorders
- There must be access to the best currently available treatments for bleeding disorders for all, regardless of cost
- National guidelines must set out mandatory best-practice standards of care to ensure that everyone with a bleeding disorder receives the same high-quality treatment, regardless of which haemophilia centre they attend
- Universal access to a comprehensive care package, including physiotherapy, occupational therapy, social support and counselling
- Recombinant (or non-plasma derived) treatment must be available for all bleeding disorders, where it exists
- Government to champion future provision of new technologies and therapies for people with bleeding disorders and direct the NHS to proactively work to allow access
- Access to appropriate social care with a comprehensive understanding of needs for the ageing population to offer dignity and safety in old age
Read more about The Haemophilia Society and the Infected Blood Inquiry here.