We are very pleased to announce that we have accepted a grant of £ 241,187.39 from the Department of Health and Social Care (DHSC), made as a result of a recommendation by the Infected Blood Inquiry.
This one-year grant will help to fund our patient advocacy work in support of all people with thalassaemia and their families across the UK. It will also allow us to improve and expand our support of the infected blood community.
The grant is made in response to Recommendation 10 of the Infected Blood Inquiry’s report in 2024, which highlighted the need to ensure the patient voice is heard. The inquiry recommended that our charity, along with the Haemophilia Society and the Hepatitis C Trust should receive statutory funding ‘specifically for patient advocacy’.
We are grateful to the inquiry for recognising that our charity’s important advocacy work, which was awarded “core participant status” at the beginning of the Inquiry, should be supported by government funding and to DHSC for honouring the inquiry’s Recommendation 10 (see p. 272 – 276 of the inquiry’s report, volume 1).
Dr. Chris Sotirelis, Chair of the UK Thalassaemia Society, said:
“In accepting this grant we are able to ensure that the specific needs of our community are not only heard but recognised and acted upon by the people with the power to be able to change lives. Our advocacy work has brought to light the need for change, so our community and communities like ours are well informed and will allow future generations to gain enough knowledge to ensure the prevention of further catastrophes.
Through our patient advocacy, we will continue to encourage governments, civil servants and policy-makers to embrace a culture of openness and change, placing the safety and good health of the people they serve at the heart of their work. We will help ensure the unimaginable suffering caused by the infected blood scandal results in justice for those impacted and lasting change for future generations”.
With our voice becoming even stronger due to this grant we aim to protect our community from catastrophic mistakes of the past being repeated in the future by embedding compassion and respect into our institutions.
We will shortly be holding a webinar for all UKTS members where our Chair Dr. Chris Sotirelis and our Treasurer Helen Chandler, will be setting out our plans for this grant and will answer questions.
We would also like to recognise the invaluable work carried out by other stakeholders. Their relentless lobbying and commitment to uncovering the truth on behalf of the infected blood community has our gratitude and respect.
