Groups have called for a system that monitors fatal allergic reactions in the United Kingdom to receive continued support.

The British Society for Allergy & Clinical Immunology (BSACI) is leading the request for additional funding for the UK Fatal Anaphylaxis Registry (UKFAR). Anaphylaxis is a serious, and potentially life-threatening allergic reaction.

In 2020, BSACI and Manchester Foundation Trust received a one-off grant of £100,000 ($116,000) from the Food Standards Agency (FSA) to support the Fatal Anaphylaxis Registry. 

Fiona Rayner, BSACI chief executive, said: “Long-term funding is needed to sustain and analyze retrospective cases as well as prospective cases, as it’s critical to be able to reduce the number of deaths in the future. The BSACI have been working with the Food Standards Agency to secure funding from the Department of Health and Social Care and are awaiting to hear the outcome of a proposal to support the UK Fatal Anaphylaxis Registry.”

Understanding and prevention

The registry has staff who collect and analyze data from deaths recorded as anaphylaxis to identify patterns to understand more about what causes people to die from anaphylaxis. The hope is more knowledge will improve survival rates.

UKFAR seeks to assemble details of every fatality in the UK since 1992 for which anaphylaxis is a possible cause of death. The registry was founded by Richard Pumphrey in the 1990s.

The call comes as an inquest into the 2017 death of Celia Marsh started this week. Marsh died after eating a pre-packaged vegan sandwich from Pret A Manger. She had a cow’s milk allergy. The sandwich included supplied vegan yogurt that was found to contain dairy protein.

Lead investigator on the UK FAR, Dr. Vibha Sharma, said the register is informative for allergic individuals and 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. Continued detailed review of each case of fatal anaphylaxis is likely to enhance our understanding and help avoid future deaths.”

BSACI said to help understand why these fatalities occur, and reduce deaths, the medical profession needs to find out more about how anaphylaxis becomes lethal.

Wider backing

Tanya Ednan-Laperouse, co-founder of the Natasha Allergy Research Foundation, said it was vital that funding continued for the 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,” she said.

Natasha Ednan-Laperouse died in 2016, aged 15, after a severe allergic reaction to sesame in a baguette bought at Pret A Manger. 

Parents of two teenagers who died in separate incidents also spoke in support of the register.

Paul Carey 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.” 

Judith Bousquet said: “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.”

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

Carla Jones, CEO of Allergy UK, said: “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.”

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