Intended for healthcare professionals

Opinion

Infected blood inquiry: justice will only be delivered when all the recommendations are acted upon

BMJ 2024; 385 doi: https://doi.org/10.1136/bmj.q1256 (Published 07 June 2024) Cite this as: BMJ 2024;385:q1256
  1. Clive Smith, chair1
  1. 1The Haemophilia Society

There were six themes that emerged from the final report of the Infected Blood Inquiry. It is no accident that Brian Langstaff, chair of the inquiry, identified the first theme as the failure to make patient safety the paramount focus of decision making and action. The UK prime minister Rishi Sunak spoke of a day of shame for the nation as the report was released. That shame extends far beyond Parliament, to Whitehall, to the NHS and further.

Over 40 years since the initial shockwaves of the contaminated blood scandal were felt, one would hope that significant change would have occurred, with little need to make many further recommendations in relation to patient safety. Worryingly, the report observes that more still needs to be done to achieve a safety culture within the NHS. Langstaff observes that a repeated lesson from the inquiry has been that patients’ views were sidelined.

In terms of how this can be changed, the inquiry recommends that the General Medical Council (GMC) should put together a package of training materials, with excerpts from oral and written testimony by patients, to underpin what can happen in healthcare, and what must be avoided in the future. The victims of all scandals are united by the desire for their suffering never to be repeated. That desire extends to a willingness to be included in the education of healthcare professionals. If the patient voice is to be respected by future generations of healthcare professionals, action is required to promote it from the very start.

The inquiry makes further recommendations about extending the statutory duty of candour. Importantly, it recommends this duty should be extended to those in executive positions and board members. When patients raise concerns, these are often not dealt with directly by healthcare professionals, but instead are handled by managers. Too often this results in reputation being put before safety. The inquiry recommends that any person in authority should be personally accountable for failing to consider a patient’s concerns. Individuals should no longer be able to hide behind a corporate shield, where patient complaints are considered to be an inconvenient truth.

Significantly for the haemophilia community, the report makes specific mention of protecting the safety of haemophilia care. Principle among these is that peer review of haemophilia care should continue as it is presently practised. Since 2019, patients, carers, and healthcare professionals have been working with the Quality Review Service to peer review the UK’s haemophilia centres. I worked as a patient representative across the last two peer reviews. I have seen first-hand how, despite peer reviews being carried out, change is still appallingly slow. In 2019, the peer review highlighted that two thirds of haemophilia centres had inadequate psychological support and physiotherapy.1 I have taken part in two further peer reviews this year, and I saw how in certain centres little has changed.

To effect change, patients’ voices must be heard and acted upon. To that end, it is encouraging that Langstaff has recommended funding for a number of organisations, including the Haemophilia Society, which I chair. Further, the report recommends that multi-disciplinary regional networks should be established and involve patients in their discussions; clinical audit should include measures of patient satisfaction or concern and be reported to the board; and greater prominence to be given to the online Yellow Card system (which collects information about the side effects of drugs). If an inquiry had been called sooner, these recommendations could have taken effect years ago.

While the apology from the prime minister in the House of Commons was welcome, in order for the apology to be meaningful, it must be coupled with tangible change. The first of the seven Nolan Principles of Public Life is selflessness. Until we put safety before self, the lessons of the contaminated blood scandal will not be learnt, and the mistakes of the past will be visited upon present and future generations. If our health service continues to sideline or ignore what patients say, then its actions will continue to harm and be to the detriment of us all.

Compensation will be paramount for many who have suffered for so long as a result of the infected blood scandal. However, for a community that has campaigned for decades, the recommendations for cultural change will be equally important for those who continue to live with a lifelong bleeding disorder, coupled with infection. Justice for the contaminated blood community, as well as society at large, will only finally be delivered when all the recommendations from the inquiry are actioned.

Footnotes

  • Competing interests: chair of the Board of the Haemophilia Society, chair of the World Federation of Haemophilia Youth Committee, patient representative UK Rare Disease Framework Board, member of the BioMarin Patient Advisory Group, member of the SOBI patient advisory group.

  • Provenance and peer review: commissioned, not externally peer reviewed.

References