Leading allergy charities call for Allergy Tsar on eve of parliamentary debate - BSACI

Leading allergy charities call for Allergy Tsar on eve of parliamentary debate

11th may 2023

  • 20,000-strong petition prompts MPs’ debate
  • Healthcare professionals and allergy families back national lead
  • Demand follows comments by coroners at allergy inquests

Britain’s leading allergy charities for families, patients and healthcare professionals today call on MPs to back their call for an Allergy Tsar.

It follows a parliamentary petition launched by two mothers, Tanya Ednan-Laperouse OBE and Emma Turay, whose teenage daughters died from severe allergic reactions.

Natasha Ednan-Laperouse died aged 15 in 2016 following a severe allergic reaction to a baguette containing hidden sesame seeds. Shanté Turay-Thomas died aged 18 in 2018 from a severe reaction to hazelnut.

Following the mothers’ petition, MPs are to debate the demand for a tsar or national allergy lead, in Westminster Hall on Monday.

Despite affecting more than 20 million people, the Government has admitted* there is no single person in the Department of Health and Social Care or NHS England who has overall responsibility for the wellbeing and health care of allergy sufferers.

The need for an Allergy Tsar is supported by The Natasha Allergy Research Foundation, the charity set up by Natasha’s parents, and the National Allergy Strategy Group (NASG), which represents the healthcare professionals charity British Society for Allergy & Clinical Immunology, and patient charities Allergy UK and Anaphylaxis UK.

The lack of a national lead has been raised time and again by coroners. It was first raised in 2020 at Shanté Turay-Thomas’s inquest and again last month by the coroner following the inquest into Alexandra Briess, who died aged 17 from a severe reaction to the drug Rocuronium.

In July 2021, The Natasha Allergy Research Foundation launched the parliamentary petition calling for the appointment of a tsar to act as a champion for people living with allergies and help prevent avoidable deaths.

The petition gained more than 20,000 signatures, and research for the charity** showed almost two thirds of adults – 61 per cent – supported the appointment of an Allergy Tsar.

An Allergy Tsar would:

1. Act as a public champion to tackle the allergy epidemic now.

2. Advocate for an increase to the number of specialist allergy clinics, as part of both children and adult services – one in every part of the country.

3. Work with Government to achieve mandatory reporting of all anaphylaxis events presenting to hospital, to support comprehensive investigation of fatal and near-fatal anaphylaxis events.

4. Work with stakeholders to better align primary care and hospital allergy services so that patients have a coherent NHS care pathway.

5. Advocate for more specialist allergy doctors and consultants, and mandatory training in allergies for all GPs.

Campaigners say the tsar or national lead is urgently required because of the explosion of allergies, particularly among young people. UK hospital admissions for food-induced anaphylaxis have tripled over the 20 years between 1998 and 2018. The largest increase was seen in children under 15 where there has been an average annual increase of 6.9% in admissions with a serious allergic reaction. As well as the national lead, the charities are calling on the Government to set up an Expert Advisory Group for Allergy and to develop a National Allergy Action Plan.

Nadim Ednan-Laperouse OBE, co-founder of Natasha’s Foundation, said: “It is of enormous significance that Britain’s leading patient and healthcare professionals charities have come together to demand an Allergy Tsar. It shows that the voices of the allergic community are as one. It is now time for the Government to deliver.”

Fiona Rayner, CEO of BSACI, said: “One third of the UK population are living with an allergic disease, but no one has overall responsibly for allergy in the UK. The British Society for Allergy and Clinical Immunology (BSACI) wholeheartedly supports this call for a National Allergy Lead.”

Simone Miles, CEO of Allergy UK, said “For too long the allergic community has been subject to a sparse and inequitable provision of specialist allergy services. resulting in patient delays and even more strain on the NHS. Allergies need to be taken seriously and provided for in the same way as other chronic conditions. A national clinical lead will go some way to helping this be achieved.”

Simon Williams, Chief Executive of of Anaphylaxis UK, said: “People with allergies face unequal access to specialised allergy services, often leading to considerable delays in patient care and causing heightened anxiety and a detrimental effect on their overall well-being. It is crucial to recognise the significance of allergies and ensure they receive the same level of attention as other long-term conditions. Having a national clinical lead would contribute significantly towards accomplishing this goal.”

* See Government response to Allergy Tsar petition https://petition.parliament.uk/petitions/589716

** OPINIUM interviewed 2000 UK adults, weighted to nationally representative criteria, from 25th -29th June 2021.