Delays in supporting ‘UK Fatal Anaphylaxis Registry’, puts more lives at risk - BSACI

Delays in supporting ‘UK Fatal Anaphylaxis Registry’, puts more lives at risk

26th September 2022

With the inquest into the death of Celia Marsh who died in December 2017 concluding on Thursday 22nd September, the British Society for Allergy & Clinical Immunology (BSACI) is calling for additional funding for the Fatal Anaphylaxis Registry (UKFAR). 

Celia tragically died after eating a pre-packaged vegan sandwich. She was known to have a cow’s milk allergy. Maria Voisin, Senior Coroner for Avon, “concluded Celia suffered an anaphylactic shock”.

In 2020 The British Society for Allergy & Clinical Immunology (BSACI) in collaboration with Manchester Foundation Trust (MFT) received a one-off grant of £100,000 from the Foods Standards Agency (FSA) to support the development of a Fatal Anaphylaxis Registry. The registry employs experts who collect and analyse data from deaths that have been recorded as anaphylaxis to identify patterns of events so that we may understand more about what causes people to die from anaphylaxis and improve survival rates. To continue its work, more funding is needed on a sustainable basis. 

Fiona Rayner, BSACI Chief Executive states;

“Sadly, these cases are becoming more frequent and understanding why these fatalities occur, and to reduce deaths, the medical profession needs to understand the mechanisms by which anaphylaxis becomes lethal.  It is important to accurately count and study each death from anaphylaxis. This has been recognised, and recommended by, HM Coroners (3).”

“The one-off grant from the Food Standards Agency (FSA) will run out by the end of the year. Long-term funding is needed to sustain and analyse retrospective cases as well as prospective cases, as its critical to be able to reduce the number of deaths in the future. The BSACI have been working with the Food Standards Agency (FSA) to secure funding from the Department of Health and Social Care (DHSC) and are awaiting to hear the outcome of a proposal to support the UK Fatal Anaphylaxis Registry.”

Lead Investigator on the UK Fatal Anaphylaxis Registry Dr Vibha Sharma explains:

“The UKFAR is unique in the kind of information it can collect and retain. This registry has been informative for allergic individuals and for those involved in their management. There is still a lot that remains ill understood. We are aware that anaphylaxis is common but deaths from anaphylaxis are rare. Why some die and many recover is ill understood. Continued detailed review of each case of fatal anaphylaxis is likely to enhance our understanding and help avoid future deaths.”

Each case of fatal anaphylaxis is unique. Learning lessons from each of these deaths is important. Attempts must be made to learn from each of these cases. Early involvement of UKFAR in assessment of suspected fatal anaphylactic events will facilitate collaboration for important data, evidence gathering to help identify contributing factors, and focus on relevant post-mortem assessments.”

Calls for the ongoing funding of the UK Fatal Anaphylaxis Registry were also echoed by UK allergy charities Allergy UK and Anaphylaxis UK that both support people living with allergies.

Carla Jones, CEO of Allergy UK, the leading national charity for people living with all types of allergy, comments, “Our most heartfelt condolences go out to the family of Celia Marsh for whom this inquest has undoubtedly resurrected the devastation of such a needless and tragic death of a loved one.  We continue to be faced with a society that doesn’t take allergy seriously, which is why we urge the call to be heard for a UK Fatal Anaphylaxis Registry to be introduced without further delays. It is a crucial step in helping to ensure the risks of this happening to anyone again in the future are significantly reduced.”

Sarah Baker, Head of Health Policy and Developments at Anaphylaxis UK, said “We would like to offer our heartfelt and deepest sympathies to the family of Celia Marsh at this difficult time. It is vitally important we learn the lessons from such tragic events and prevent any more needless deaths from anaphylaxis.”

A referral can be made for UKFAR involvement here

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