Inquiry recommendations – our survey published

Written by Jessica Bomford, June 22, 2022

Earlier this year we asked you, our members, what key issues should be included in the Infected Blood Inquiry’s final report, and we are now able to share the results.

Sir Brian Langstaff, chair of the inquiry, asked core participants, including the Haemophilia Society, to give him an outline of what should be in his final report so that if a new topic is raised, there is enough time to schedule relevant witnesses before the end of the year. To ensure our response accurately reflected your views, we sent out a survey to get your opinion on a number of issues.

From your replies, we have assessed the strength of feeling on a variety of topics and have used these findings as the basis for our response to Sir Brian which was submitted this week. Thank you to everyone who took part. You can read the survey results here.

There was a great response, with 251 members answering 41 questions which covered issues including storage of personal data, a permanent memorial, communication with doctors and the merits of health passports. Of those who took part, 56% had a bleeding disorder and had been infected through contaminated blood products and 27% were bereaved family members.

The best treatment should be given to each patient, regardless of which bleeding disorder or condition they have.

response to our survey

The best treatment should be given to each patient
regardless of which bleeding disorder or condition
they have

The survey was conducted anonymously, with comments welcomed. We have published the survey, but not all the comments, as some could have identified the individual involved. The survey did not ask for views on compensation, as this has already been covered separately.

Some issues attracted overwhelming support, such as the introduction of a Special Advocate to ensure the inquiry’s recommendations are implemented, the banning of any waivers on any future financial settlement with the government and the need to take decisions about whether to hold future public inquiries out of the hands of the government. There was also strong support for mandatory training of junior doctors and nurses about the contaminated blood scandal and guaranteed access to recombinant treatment for all.

Other points of interest were that 24% of respondents said they were made to feel like a burden on the NHS with 12% feeling pressured to agree to a certain treatment on costs grounds.

While 77% of people broadly agreed with the idea of a health passport which gave priority treatment for people infected as a result of contaminated blood products, some commented that they were uneasy with the notion of ‘jumping the queue’. Comments indicated that some people felt more comfortable with the idea of a health passport meaning the guarantee of the best treatment, regular monitoring and good care, including social and palliative.

Sir Brian will now consider all the submissions from core participants and decide if further evidence needs to be heard in the autumn as a result of anyone’s suggestions. His final report is not expected until mid-2023.

If you have any questions or comments about the survey please email us at [email protected]

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