Food Labelling and Allergies

Andy Slaughter Excerpts

Monday 15th May 2023 Westminster Hall

[Jon Cruddas (Dagenham and Rainham) (Lab)]

What we are talking about today matters a great deal to a great many people. Millions across the country suffer from some allergic condition: it is estimated that 44% of adults and 50% of children in the UK have one or more allergic disorders. While the prevalence, severity and complexity of allergies have increased on a global scale over the past 60 years, UK rates are among the highest in the world. There is a modern-day epidemic in allergy. I therefore very much welcome both petitions: one to appoint an allergy tsar as a champion for people living with allergies and the other in support of Owen’s law, a change in the law around allergy labelling in UK restaurants. I congratulate the organisers. Literally tens of thousands of people are mobilising and demanding a change both in public health and in corporate responsibility for labelling policy.

Why do we need an allergy tsar? No single person has overall responsibility for the wellbeing of allergy sufferers in the Department of Health and Social Care, NHS England or anywhere else in Government. There are no clear lines of accountability in relation to the overall NHS provision of allergy care. An allergy tsar would act as a champion for people living with allergies. As the national lead, the tsar would ensure that adults and children with allergies received appropriate support to prevent avoidable death and ill health. The lack of a national lead has been raised time and again by coroners at the inquests of those who have tragically died following severe allergic reactions. The need for an allergy tsar is supported by the National Allergy Strategy Group and across the allergy community.

[Andy Slaughter (Hammersmith) (Lab)]

I pose this question because my hon. Friend is an expert in the subject. There have been calls for a national allergy tsar for a long time. Does he understand why the Government are resistant to them?

[Jon Cruddas]

I will come on to that point. There have been 20 years of reports that agree about a common platform for policy change, and there is a unanimity across the community. It is bewildering that over the past 20 years, Governments have not responded in a proactive way, although over the past 18 months there have been a few changes, which I will come to later.

The need for an allergy tsar is supported by the National Allergy Strategy Group. In addition, the Natasha Allergy Research Foundation and the NASG are asking the Government to better support people with allergies through, first, an expert advisory group for allergy, which would actively support the growth and delivery of high-quality, comprehensive and geographically diverse allergy provision, and secondly a national allergy action plan.

--- Later in debate ---

[Andy Slaughter (Hammersmith) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Graham, in such an important debate. I will echo the Chair of the Health and Social Care Committee, the hon. Member for Winchester (Steve Brine), and others. Through relatively small changes to how the NHS is organised and to legislation, this dramatic change would both improve and save the lives of millions, so I hope we will hear something positive from the Minister.

I also thank the hon. Member for Don Valley (Nick Fletcher), who opened the debate, for his comments about Natasha Ednan-Laperouse and her family, and for the sensitive and compassionate way in which he dealt with that tragic death. Natasha’s family are my constituents, and we have heard that Natasha died at the age of just 15 from eating an inadequately labelled Pret a Manger sandwich.

The afternoon I spent with Nadim, Natasha’s father, will stay with me for the rest of my life. He described his experience of how she went from enjoying a happy holiday—getting ready to go out, the excitement of getting ready to fly, taking the precautions she normally did as someone who knew about her allergies, in this case to sesame—to end in her awful death. I do not want to draw that out today, though.

I am very pleased to see Natasha’s mother Tanya here today. I feel huge sympathy and compassion for the family, but also huge admiration for them and everything they have done to commemorate Natasha’s life, going far beyond what many people have done to ensure that the lives of others are improved. Not only have they set up the Natasha Allergy Research Foundation, which we have heard about, but they pioneered Natasha’s law, which came into effect in 2021. It requires food businesses to include full ingredient labelling on foods that are pre-packed for direct sale. Natasha’s law filled an important gap in food legislation and food safety, and Owen’s law would do exactly the same in another respect. His family are here today, and I praise them for having courage and pursuing this matter. I hope that because of the efforts made by these families, we will see a positive response.

Although we have taken those important steps forward, there is still a lot of work to do, hence the petitions and the debates today and last week in this Chamber. The petitions received a very high number of signatures, and some of the highest numbers were among my constituents. That shows how a case such as Natasha’s can have a profound impact on not just a family, but a whole community.

I am grateful to my hon. Friend the Member for Dagenham and Rainham (Jon Cruddas) for securing last week’s debate marking Allergy Awareness Week and for his speech today. I looked carefully at the Minister’s reply, which I will come back to in more detail in a moment, from the debate last Thursday. I read nothing about steps towards appointing an allergy tsar in that response, which is unfortunate because that is something that the allergy community tell us is needed to keep people safe and to keep research moving forward.

As we heard in both debates, allergies in the UK are on the rise. About one in three people have an allergy-related disorder, and over the past 20 years there has been a more than 600% increase in hospital admissions due to allergic diseases. It is not just the numbers of allergy sufferers that are escalating, but the severity of the symptoms. Over 200,000 people in the UK require emergency adrenalin on prescription to manage their allergy.

The very real and ever-present risk of death from an allergic reaction is an ongoing trauma for families and parents of young children who have an allergy condition. As we have heard, about 50% of our child population now live with an allergic condition. Many of our schools have rightly become nut-free zones, due to the numbers of children who would be at risk if someone brought in a nut-based food in their lunchbox. Children go to school with medication bags including EpiPens and adrenaline, in case the worst happens. We should not underestimate the distress and anxiety that that can cause a child, who must learn from a very early age the consequences that can come from eating the wrong thing.

The weight of that on a child is really quite unfathomable, yet we have nobody in the Department of Health and Social Care or NHS England who is responsible for a strategy to tackle allergies. We know that this is a growing problem and research is desperately needed, but to ensure that allergic conditions get the focus they need, someone must be appointed to champion the issue. Given the current state of the NHS, we all understand that resources are stretched, but if the Government committed to an allergy lead, along with funding, they would allow someone to take ownership of the matter and drive forward a strategy to improve the lives of those with allergies.

If I may, I will give a brief, or at least recent, history and timeline of the lack of progress made towards appointing an allergy tsar. Back in January 2020, an inquest was held into the death of another young person who tragically died as a consequence of an allergy: Shante Turay-Thomas. Following the inquest, Emma Turay, Shante’s mother, said:

“Nothing will ever bring our beautiful Shante back to us but what has kept me going throughout this process is knowing that she would want me to get answers and make sure the same thing doesn’t happen to anyone else…The coroner highlighted the fact that no one person in NHS England or the Department of Health is responsible for allergies, and it is quite clear we need an allergy tsar to co-ordinate and implement steps to prevent others from suffering avoidable deaths like Shante’s.”

It is interesting that we still do not have access to a compendium of prevention of future deaths reports. We rely on individual reports, which are very important, but if coroners’ reports were better organised, this issue would have much greater public attention. In Shante’s case, the coroner’s report said:

“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 response from the then Minister for Social Care, the hon. Member for Faversham and Mid Kent (Helen Whately), was:

“Although there is no single, named individual with oversight for all aspects of allergy policy, individuals and teams work closely together in the Department on all aspects of policy relating to allergies.”

The inadequacy of that response led to the petitions being launched and to the call by tens of thousands of people for the Government to appoint an allergy tsar to act as a champion for people with allergies and ensure they receive appropriate support and joined-up healthcare, and so prevent avoidable death and ill health.

In June 2022, following those events, the Natasha Allergy Research Foundation met a new Health Minister, who showed an interest and assured the foundation that meetings were ongoing with the National Allergy Strategy Group and my hon. Friend the Member for Dagenham and Rainham. Three months later, because of the carousel of Prime Ministers turning, the Health Minister was demoted to a different Department and the momentum was lost, notwithstanding the fact that my hon. Friend the Member for Nottingham North (Alex Norris), who was then the shadow Health Minister, tabled an amendment to the Health and Care Bill to create an allergy tsar. Although the Government refused to accept the amendment, the then Health Minister promised to raise the issue with NHS England.

There is a constant expectation that something is going to be done, and then it is dashed, either because of inaction by a particular Minister or because the Minister has simply moved on. Time and again, progress has stalled because of the musical chairs—the many Prime Ministers and the sacking, promotion and demotion of Ministers—and the allergy community has been left waiting patiently for the matter of an allergy tsar to be taken seriously once more.

This reminds me of the long battles we fought to have inquiries into Hillsborough and the contaminated blood scandal. Ministers constantly promise things, or at least say they will look into things, and then they move on and we are suddenly back to square one. I hope the Minister will give us positive news today, not just warm words, and that he will tell us about tangible steps he will take to appoint a lead person for allergies as soon as practicable.

I have not heard anybody coherently argue against the merits of having an allergy tsar, which is why I posed the question I did to my hon. Friend the Member for Dagenham and Rainham. An allergy tsar would be dedicated to and focused on the development of research into cures for allergies, and tasked with ensuring specialist allergy clinics and services up and down the UK. They would be a dedicated lead who works with the Government to implement mandatory reporting on all anaphylaxis events presented to hospital to support comprehensive investigations of fatal and near-fatal anaphylaxis events, and a champion and advocate for those who live with allergic conditions and need more specialist practitioners in their corner.

There is a lot more that I could say, but I will concentrate on two questions that I would like the Minister to answer. First, in relation to the appointment of an allergy tsar, may I remind the Minister what his colleague the Minister for Social Care said in responding to the debate last Thursday? She said:

“There have been calls over recent years—I have heard them echoed today—for stronger leadership on allergy. I am pleased to take this opportunity to outline the allergy leadership that we already have in place. In October 2022, Dr Claire Bethune was appointed national speciality adviser for specialised immunology and allergy. Dr Bethune chairs the NHS England clinical reference group that provides clinical advice and leadership on the specialised immunology services, and advises on how specialised services can best be delivered.”—[Official Report, 11 May 2023; Vol. 732, c. 264WH.]

That is not good enough. That is somebody who has a partial role—a part-time role—who may well do a good job in their own field, but who is not an allergy tsar. It is not a single person who is taking overriding responsibility for allergy.

Let me briefly give a few reasons why an allergy tsar is essential. The debate and the concern about the lack of a national lead on allergy has been going on for 20 years. During that time, clinical outcomes have barely improved, but the number of hospitalisations has tripled. An adviser who specialises in immunology and who simply chairs the existing clinical reference group does not meet the requirements for a national allergy lead. Allergy is currently managed by too many different professional groups. The immunologists do not see it as a priority and are more pathology-focused or laboratory-focused rather than clinically focused. That means that different specialties manage allergy disorders differently.

There is not a strong appreciation that allergy leads to severe symptoms that sometimes lead to death, for example through anaphylaxis or asthma. Allergy is too often trivialised and passed down to primary care practitioners, who are inadequately trained and over-committed in other areas. Allergy is equated with mild disease, but even hay fever has a much greater impact on those affected by it than is appreciated. It would be far better to have a national lead who could also be a clinical lead and who is an expert in managing allergic disease. Training in clinical allergy is minimal, whether for specialist clinicians or for primary care practitioners. We need special efforts to build this specialty. Finally, deaths from anaphylaxis are appreciably lower in those countries with a joined-up clinical allergy service, and in such countries population knowledge about allergy is more highly developed. The case for why we should have an allergy tsar is overwhelming and I would like a clear answer from the Minister today. I do not want a restatement of the current position, because the current position is clearly inadequate.

The second question for the Minister is whether he or one of his colleagues, ideally the Secretary of State, would meet the Natasha Allergy Research Foundation and other interested and expert parties. I ask for that meeting for three reasons. The first is that people at the foundation have personal experience, which to their great pain they have shared publicly, and they have a great deal to offer to the Government and to the NHS in explaining the needs of people with allergy.

The second reason is that the foundation and these other organisations have expertise. I have already indicated that the work done by the foundation since her death really puts the Government to shame. It is not just about the passage of Natasha’s law. The foundation also launched a £2.5 million Natasha clinical trial across six British university hospital sites, seeking to prove that everyday food products could be used in NHS settings as a cheap alternative to expensive pharmaceuticals, to provide oral immunotherapy treatment for children and young people. It has also funded bursaries over four years for students and healthcare professionals at the University of Southampton on the internationally recognised allergy master’s degree and PhD courses at this world-leading allergy research centre. The foundation also organised the global allergy symposium in September last year, which was hosted by the then Prince of Wales, now King Charles, at Dumfries House in Scotland, home of the Prince’s Foundation, to discuss allergy and the environment, which was attended by 16 of the world’s leading allergy scientists. That is the work of one family—one foundation. What have the Government done during that time to compare to it?

The third reason why a meeting is necessary is that we have waited too long. I have talked about the musical chairs of Ministers coming and going. The time is long overdue for a Minister to sit down and talk seriously to the Natasha Allergy Research Foundation and other interested parties, and to confront the issue. I would love to hear the Minister say that the Government are going forward with an allergy tsar. If he will not say that, I ask him to say that he will sit down and seriously listen in detail—he can do so far better than others in this room can—to the reasons why an allergy tsar is needed. Lives have been lost, and lives are at stake. As I said at the beginning of my remarks, the Minister’s response today can make a huge difference to how we go forward on the issue.