Level of UK allergy care "shocking" says family of woman killed in Bath
We've spoken to Ashleigh Grice, who's mum Celia Marsh died in 2017 as MPs debate allergy care
The daughter of a woman, who died in Bath from an allergic reaction, says allergies aren't taken seriously enough.
We've spoken to Ashleigh Grice, who's mum Celia Marsh died in 2017 after eating a wrap from Pret a Manger in the city which was labelled as vegan, but turned out to be contaminated with milk protein; Celia had a severe allergy to milk.
She entered into acute anaphylactic shock 15 minutes after buying the wrap and was declared dead less than two hours later.
Ashleigh's comments come as MPs debate whether someone should be appointed to lead allergy care within the NHS.
Currently no such role exists.
"I think it would be an amazing thing for all allergy sufferers and families with allergy sufferers because I think it would be very reassuring," Ashleigh said.
"I think this would enable people living with allergies to receive the appropriate care and support they need to avoid a fatal or near fatal anaphylactic reaction and I also think the champion that would be put in place for people would ensure all services involved in providing allergy care is joined up."
Ashleigh told us she feels it is "shocking" that such a role doesn't already exist.
"I think it's definitely something that should be in place," she said.
"I just think it kind of reflects how un-serious allergy is being taken.
"I just feel like that's kind of a reflection that it's not being taken serious enough, the fact that there isn't somebody in place to be appointed for that."
A debate by MPs took place on Monday (15 May) after two petitions were handed in by the families of other people killed by allergic reactions.
Tanya Ednan-Laperouse and Emma Turay have told the Health Secretary Steve Barclay that their daughters' deaths were "entirely preventable" and urged the Government to appoint such an allergy leader.
The women have written to Mr Barclay saying they are renewing their calls after receiving no response from previous health secretaries.
Natasha Ednan-Laperouse, 15, from Fulham, west London, died in July 2016 following a severe allergic reaction to a Pret a Manger baguette sandwich containing sesame.
Following her death, the law was changed to require all food outlets to provide a full ingredients list and allergy labelling on food pre-packaged for direct sale.
Shante Turay-Thomas, 18, died following a severe allergic reaction to eating a hazelnut.
A coroner ruled she died in part because of human error, with failures meaning that an ambulance took more than 40 minutes to arrive at her home in Wood Green, north London.
In the letter to Mr Barclay, the two parents said: "As mothers, we have come together for change so that our tragedies never happen again.
"Over two years ago, we wrote to both your predecessors on the need for an allergy tsar.
"Unfortunately, I still haven't heard anything from the Government on your position on a national lead for people living with allergies."
Currently, the families say, no single person has overall responsibility for the well-being of allergy sufferers in either Department of Health and Social Care, NHS England or anywhere else.
"There are no clear lines of accountability in relation to overall NHS provision of allergy care, nor for the many other areas where policy change is required," they said.
"This lack of national leadership has been raised time and again by coroners at the inquests of those who died following severe allergic reactions.
"It was raised at the inquest of my daughter, Shante. The coroner highlighted the fact that 'there is no person with named accountability for allergy services and allergy provision at NHS England or the Department of Health as a whole'.
"The coroner stated: 'There is a risk that future deaths will occur unless action is taken'."
The letter to Mr Barclay said the tsar would act as an advocate to increase the number of specialist allergy clinics and "to better align primary care and hospital allergy services so that patients have a coherent NHS care pathway".
It added: "The tsar, as the national lead, will ensure people with allergies receive proper support and joined-up health care to prevent avoidable deaths and ill health."
The tsar could also ensure all acute anaphylaxis cases are treated as a category 1 incident (the most urgent) by NHS ambulance services.
The letter added the "number of people living with allergic disease is mushrooming".
The call for an allergy tsar is supported by the National Allergy Strategy Group and charities Allergy UK and Anaphylaxis UK.
At the same time the family of a teenager from Sussex who died in very similar circumstances to Celia Marsh are calling for stricter rules around the listing of allergens on food menus.
Owen Carey from Crowborough died in 2017 after eating a chicken burger containing buttermilk, which he was allergic to.
Ashleigh said: "We are in contact with Tanya Laperouse, Natasha's mum and dad, we're always helping and trying to support...
"We also are very aware of the other cases, so we definitely support Owen's Law, so I know they're pushing for the 14 main allergens to be listed on the menus when dining out...
"But I think you could go a step further...and have on menus a QR code, so possibly have a QR code scanned, and then you could have a list of the full ingredients rather than just the 14 allergens, so that people with allergies are making an informed choice of what ingredients are being given to them."
A Government spokesperson said: "Our deepest sympathies are with the families of Shante Turay-Thomas and Natasha Ednan-Laperouse.
"We have taken action to address the challenges people with allergies face by introducing a new legal requirement for food retailers and operators to display full ingredient and allergen labelling information on every food item they sell pre-packed for direct sale.
"Clinical advice and leadership on food allergies is provided by the clinical reference group for specialised allergy and immunology services, led by NHS England."