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

With the inquest into the death of Celia Marsh in December 2017 taking place this week, the British Society for Allergy & Clinical Immunology (BSACI) has today issued a call for more funding for the Fatal Anaphylaxis Registry (UKFAR).

Celia died after she ate a pre-packaged vegan sandwich. She was known to have an allergy to cow’s milk. 

Unfortunately, these cases are becoming more frequent and understanding why these fatalities occur, and to reduce the number of deaths, the medical profession must understand the mechanisms by which anaphylaxis becomes lethal and know why these fatalities occur.

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 staff 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.

Tanya Ednan-Laperouse, co-founder of The Natasha Allergy Research Foundation, said: "It is absolutely vital that funding continues for the fatal anaphylaxis register. Recording this information is critical so that lessons can be learned and we can help keep people with severe food allergies safe. 

"We already have significant concerns that anaphylaxis deaths are being under reported and not developing this register will further undermine the huge efforts being made on behalf of the 2 to 3 million people with food allergies in this country."

Inquests into previous deaths from Anaphylaxis have resulted in calls from coroners to establish a national reporting system for recording anaphylaxis fatalities so they can be investigated. 

Judith Bousquet, the mother of Ruben Bousquet, a 14-year-old boy who died after eating popcorn with a drink at the cinema, says "Ruben had a whole life ahead of him and despite taking precautions to ensure his own safety, tragically, it wasn't enough in the environment he was in on the day he was taken from us. 

"Clearly, more needs to be done. The safety net which is currently in place for those living with allergic disease isn't sufficiently robust. A UK Fatal Anaphylaxis Registry is one step in helping to rectify this and we fully support its introduction."

Owen Carey who died after eating grilled chicken coated in buttermilk at a restaurant. Paul Carey, Owens father said: “The Campaign for Owen’s Law fully supports the continued development of the Fatal Anaphylaxis Registry. It is incredibly important that this work carries on indefinitely and is critical in helping reduce the risk of early deaths of those with allergies, as we suffered with Owen.”

Fiona Rayner, BSACI Chief Executive states “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 points out: “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 assessment/s.

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. A referral can be made for UKFAR involvement here

Carla Jones, who is the 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.”

To learn more visit www.bsaci.org.