PFD report

Celia Lindsey MARSH · Prevention of Future Deaths report

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Issued 21 Nov 2022•Avon

Report record

Published report and response evidence

This page connects the concerns raised in this report with statements found in recipients’ published responses. A link shows a clear evidence connection; it does not assign responsibility.

View original report
Concerns
12

Raised in this report

Recipients
9

Named on the report

Responses found
8

Of 9 recipients

Stated actions
24

Described in responses

Recipients and published responses

Source document

Full report text

This is the full text from the original published report.

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Concerns and recipient responses

Select any concern, action or position to view the source wording.

Concerns raised12

  1. Potentially unsafe exposure to undeclared allergens for people at significantly higher risk of fatal reactions
    Part of recurring concern: Failure to prevent undeclared allergens in food
  2. Potentially misleading food-labelling wording and public understanding of allergen absence
    Part of recurring concern: Inadequate food-allergen information and warnings for allergic consumers
  3. Lack of a robust system for capturing and recording anaphylaxis cases
    Part of recurring concern: Unreliable capture and reporting of anaphylaxis incidents
Responses linked to these concerns

Each statement is shown once, even when linked to more than one concern.

Actions described in response An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.19

  1. Action

    Developed and published guidance on manufacturing and labelling free-from products, with input from regulators and allergy charities.

    Stated by British Retail ConsortiumStated completedThe respondent said that this action was complete when they made their response on 25 November 2022.
  2. Action

    Update autopsy guidelines for suspected acute anaphylaxis to include UKFAR contact details and direct pathologists to report fatal cases.

    Stated by Royal College of PathologistsStated in progressThe respondent said that this action was in progress when they made their response on 25 November 2022.
  3. Action

    Consult members through expert policy groups on managing the risk of vegan dishes for people with hypersensitivity.

    Stated by UKHospitalityStated plannedThe respondent said that this action was planned when they made their response on 25 November 2022.

Respondent positions A position is what a recipient says about a concern when it does not describe a specific action.10

  1. Position

    The majority of allergic people can safely consume free-from products, so a universal warning could mislead consumers and restrict choices.

    Stated by British Retail ConsortiumDisputes the concernThe respondent disagreed with part of the concern or the basis for it.

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Potentially unsafe exposure to undeclared allergens for people at significantly higher risk of fatal reactions

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Failure to prevent undeclared allergens in food.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Potentially misleading food-labelling wording and public understanding of allergen absence

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Inadequate food-allergen information and warnings for allergic consumers.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of a robust system for capturing and recording anaphylaxis cases

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Unreliable capture and reporting of anaphylaxis incidents.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to obtain and preserve stomach contents and tissue samples at post-mortem examination

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Failure to preserve clinical evidence and data after serious clinical events; Unreliable coronial autopsy governance and processes; Unreliable preservation and disclosure of material for death investigations; Unreliable retention of biological samples for postmortem investigation.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of adequate education for doctors and patients in anaphylaxis risk groups

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Delays in raising suspected anaphylaxis deaths with the Senior Coroner

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Failure to reliably report deaths to coroners.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of robust confirmation of allergen absence in ingredients and production

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Failure to prevent undeclared allergens in food.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Outdated pathology guidance for suspected anaphylaxis deaths

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of a standard protocol for timely and appropriate sampling in suspected anaphylaxis deaths

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

No recurring-concern membership is currently published.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to retain hospital blood samples in suspected anaphylaxis cases

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Failure to preserve clinical evidence and data after serious clinical events; Failure to retain safety-critical source records and evidence; Unreliable preservation and disclosure of material for death investigations.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to prioritise post-mortem examinations in suspected anaphylaxis deaths

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Unreliable coronial autopsy governance and processes.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to obtain and store an early post-death blood sample for later analysis

Wider context from the report

“Concerns were raised in relation to the immediate investigation into a suspected death from anaphylaxis, that the evidence obtained at this time, with the right approach, can be invaluable to preventing deaths, but that to achieve this changes are required. This would need changes in the death investigation process and the wider investigation which would need assistance from the Food Standards Agency (FSA). I was made aware that there needs to be better education both to doctors and to patients in risk groups to prevent future deaths I was also advised that whereas the FSA would be required to assist with the above areas it could also assist in relation to the current practices of food labelling. Firstly in relation to Pathology, I am told that the current guidance is 10 years old, the suggestion is for this to be revisited and specifically: • If bloods are taken at hospital that they are not destroyed in a suspected case but retained for testing • That an early blood sample is taken after death and stored for late analysis • That the possibility that a death is due to anaphylaxis is raised with the Senior Coroner for the area where the death occurred at the earliest opportunity • That an early blood sample is taken after death • The post mortem examination should be prioritised. • At the post mortem examination: that stomach contents are taken and frozen to enable testing and that tissue samples are taken A standard protocol should be available to ensure appropriate samples are taken at the correct time to assist later investigation. In relation to doctors/patients: • To highlight, through public awareness and to the medical profession, that while the majority of food-allergic individuals are at very low risk of fatal reactions, a small subset of food-allergic individuals may be at significantly higher risk. These persons must be given appropriate advice as to the dangers of inadvertent exposure, since there may be no detectable safe level of allergen that can be present in a product for this group. • To be aware that avoidance of foods in adults does not improve eczema and may result in more severe allergy to the food avoided particularly to cow’s milk but tolerance can be maintained by continued regular exposure. In relation to the FSA, the UK Health Security Agency and the Department of Health and Social Care: • To establish a robust system of capturing and recording cases of anaphylaxis, and specifically, fatal and near-fatal anaphylaxis, to provide an early warning of the risk posed to allergic individual by products with undeclared allergen content. • Such a system could involve mandatory reporting of anaphylaxis presenting to hospitals, analogous to the current system used for notifiable diseases (including some food-borne illnesses) whereby registered medical practitioners have a statutory duty to notify the ‘proper officer’ at their local council or local health protection team of suspected cases of certain infectious diseases. An example of such a reporting system for anaphylaxis already exists in the state of Victoria in Australia, and also allows for rapid alerts of serious cases to public health authorities to expedite investigation and evaluate the public health risk. In relation to the FSA, the British Retail Consortium, Food and Drink Federation and British Hospitality: • The wording used on food products, and the public’s understanding of these phrases in terms of implying the absence of a particular allergen, can be potentially misleading. Examples include: “free-from” and “vegan”. Foods labelled in this way must be free from that allergen, and there should be a robust system to confirm the absence of the relevant allergen in all ingredients and during production when making such a claim. • With respect to those with the most severe food allergies, it may be necessary in the interim to clarify that foods labelled “free-from [X allergen]” may not be safe to consume. In relation to the FSA: • A hotline to the FSA to provide guidance in fatal cases due to suspected anaphylaxis, although a mandatory reporting system (suggested above) would address this need. • Nationally recognised best practice and technical advice to assist those investigating such cases; ”

Is this part of a recurring concern?

Yes — Unreliable determination and recording of causes of death; Unreliable retention of biological samples for postmortem investigation.

Open source report

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Developed and published guidance on manufacturing and labelling free-from products, with input from regulators and allergy charities.

Verbatim wording from the response

“In the absence of more specific requirements, the BRC, jointly with the Food and Drink Federation (FDF), worked on a guidance document on how to manufacture and label ‘free-from’ products**. The Food Standards Agency and allergy charities were consulted during the development process of the document. The document is used by our members and is publicly available for other companies to use.”

Source location

Response from British Retail Consortium
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Update autopsy guidelines for suspected acute anaphylaxis to include UKFAR contact details and direct pathologists to report fatal cases.

Verbatim wording from the response

“The Royal College of Pathologists is currently updating its autopsy practice guidelines for suspected acute anaphylaxis. The updated guidelines will include contact details for the UKFAR and direct pathologists to report fatal anaphylaxis cases to the UKFAR.”

Source location

Response from Royal College of Pathologists
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consult members through expert policy groups on managing the risk of vegan dishes for people with hypersensitivity.

Verbatim wording from the response

“It is clear to see that the market for vegan dishes has grown substantially over the last few years. Many businesses across the UK offer a number of vegan options on menus, with vegan restaurants continuing to grow in popularity. When making specific claims around vegan dishes, whilst it is important to provide customers with as accurate information as possible, statements regarding vegan food is not a hypersensitivity issue. However, we recognise the importance of the issues set out in your report and commit to carrying out a consultation with members in the aforementioned expert groups on managing the risk of vegan dishes for people with hypersensitivity, and reflecting any recommendations in future updates to the Industry Guidance.”

Source location

Response from UK Hospitality
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Publish an updated Industry Catering Guide covering legal obligations, good hygiene practice, allergens, and preventing cross-contact when making “free from” claims.

Verbatim wording from the response

“Prior to the publication of your report and the specific recommendations for UKHospitality, we released in early November 2022 an updated version of our Industry Catering Guide to”

Source location

Response from UK Hospitality
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Operate processes for proactively recording UK deaths from anaphylaxis through linked data sources.

Verbatim wording from the response

“We have all the processes in place for this system of proactively recording deaths through our web of linkages in the UK which will benefit everyone concerned in learning lessons and attempting to reduce future deaths from anaphylaxis. Our extensive work has repeatedly highlighted the issue of incorrect food labelling resulting in fatal anaphylaxis and we support any initiative taken by the retail industry to improve and clarify these labels to ensure the safety of people with food allergies.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 4 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Establish and continue systematic information-sharing links with NHS agencies and other relevant organisations to support register data collection.

Verbatim wording from the response

“- For best chances of data retrieval, we have focussed our work on the last ten years in the first instance. The data available and analysed thus far has been shared as Appendix 1 of this document - strategic engagement to create links with allied agencies has been successfully made. These are outlined in Appendix 2 of this document.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 3 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consider holding an educational event on food avoidance for adults with eczema and food allergy.

Verbatim wording from the response

“The BSACI share all of the concerns raised in the report and acknowledge that there are significant areas of need around the current shortcomings in both education of doctors, reporting and analysis of anaphylaxis fatalities to safeguard those who suffer from food and other potentially severe allergies. This is something that the BSACI has a long track record of advocacy around through the National Allergy Strategy Group, www.nasguk.org who have been actively lobbying for improvement. The BSACI recognise the importance of improved education of doctors on food avoidance in relation to adults with eczema and will consider holding an educational event (eg: BSACI Annual Conference)”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Provide governance for the UK Fatal Anaphylaxis Register.

Verbatim wording from the response

“However BSACI have been collaborating with Manchester Foundation Trust over the past 18 months by providing governance for the UK Fatal Anaphylaxis Register. This register is the only register of its kind in the UK. The aim of the register is to proactively collect data to help us understand the risks and causes of fatal anaphylaxis by analysing the data to determine what the risks of recurrence are, in order to prevent further deaths. Due to the lack of funding previously the register had not been updated since 2005, however in 2020 it was agreed that The British Society for Allergy and Clinical Immunology (BSACI) would provide governance for the register following a one off £100,000 grant from the FSA.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Provide dedicated senior research nurse, administrative, and registry-custodian capacity to support register work.

Verbatim wording from the response

“The grant has allowed investment towards time of a senior research nurse and an administrative assistant contributing 2 sessions each week, payment to ████████ from Allergy Action and to The Office of National Statistics to continue to receiving annual data.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 3 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Maintain and improve the UK Fatal Anaphylaxis Register by updating backlog cases, pursuing missing information, and analysing fatal anaphylaxis data.

Verbatim wording from the response

“While many coroners have called for this function to exist, mechanisms of awareness among those who work in the field has been sub-optimal. The data collection is onerous with in-built delays. Since receiving the funding from FSA, UKFAR has made a concerted effort towards the sole purpose of the grant which was to update the backlog of cases. Due to various recent regulatory changes in data retention, UKFAR has had to update permissions. This led to a re-think and the opportunity to improve liaison with allied agencies based within and outside the NHS which will help reduce existing future such backlogs. However this funding will shortly be running out and after numerous attempts to secure continuous funding from the FSA, we have been informed we have not been successful. We then contacted the DoH directly, however they have not responded to our emails.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consult on the updated allergen technical guidance concerning precautionary allergen and free-from statements.

Verbatim wording from the response

“We are in the process of updating our allergen technical guidance to say that precautionary allergen statements should not be used in combination with a ‘free from’ statement for the same allergen. This work is ongoing and will be put out for further consultation shortly.”

Source location

Response from Food Standards Agency
Page 4 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Establish the UK Anaphylaxis Registry through the FSA-funded NHS Data project and update its reporting questionnaire with local-authority contact details.

Verbatim wording from the response

“The FSA-funded NHS Data project¹ was established to monitor trends in the occurrence of severe, food induced allergic reactions. This work includes the establishment of a UK Anaphylaxis Registry to collect data relating allergic reactions to both food and non-food triggers. While the Registry is not aimed at aiding the investigation of incidents, the questionnaire completed by patients when reporting reactions to the Registry is being updated to includes details on how to contact their local authority’s food safety team to report an incident.”

Source location

Response from Food Standards Agency
Page 3 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Provide funding to update and maintain the UK Fatal Anaphylaxis Register.

Verbatim wording from the response

“Additionally In 2021, the FSA provided one-off funding to enable the UK Fatal Anaphylaxis Register (UKFAR) to be updated and maintained. The UKFAR, overseen by the British Society for Allergy and Clinical Immunology, is an active register of deaths from anaphylactic reactions, including food allergies which provides a long-term source of data to improve our understanding of the causes of anaphylaxis related fatalities. This work will help the FSA in its work to reduce numbers of food-related anaphylactic reactions.”

Source location

Response from Food Standards Agency
Page 4 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consider how best to promote current guidance to businesses producing foods with free-from and vegan claims.

Verbatim wording from the response

“We will consider how best to promote the current guidance to businesses producing foods with these claims to encourage best practice more widely and continue to consider it alongside our work on precautionary allergen labelling.”

Source location

Response from Food Standards Agency
Page 5 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Update allergen technical guidance to discourage combining precautionary allergen statements with same-allergen free-from statements.

Verbatim wording from the response

“We are in the process of updating our allergen technical guidance to say that precautionary allergen statements should not be used in combination with a ‘free from’ statement for the same allergen. This work is ongoing and will be put out for further consultation shortly.”

Source location

Response from Food Standards Agency
Page 4 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Continue identifying ways to promote allergen-free and vegan claims guidance to companies.

Verbatim wording from the response

“The ‘Allergen’-Free & Vegan Claims guidance includes a foreword from the FSA and has been commended by the Anaphylaxis UK and Vegan Society. We have made this guidance freely available so that all food businesses can access it, regardless of whether they are a member of the FDF. It has been widely shared and well received across the UK and internationally, and we will continue to look at ways of promoting this to companies.”

Source location

Response from Food and Drink Federation
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Make allergen-free and vegan claims guidance freely available and disseminate it to food businesses and wider audiences.

Verbatim wording from the response

“The ‘Allergen’-Free & Vegan Claims guidance includes a foreword from the FSA and has been commended by the Anaphylaxis UK and Vegan Society. We have made this guidance freely available so that all food businesses can access it, regardless of whether they are a member of the FDF. It has been widely shared and well received across the UK and internationally, and we will continue to look at ways of promoting this to companies.”

Source location

Response from Food and Drink Federation
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Produce industry guidance explaining appropriate use of free-from allergen claims and required risk controls.

Verbatim wording from the response

“In 2015, aware that a growing number of food business operators - including manufacturers, retailers and caterers - were making such claims for their food products, the FDF produced industry guidance in conjunction with the BRC to explain the appropriate use of “free-from” claims in relation to food allergens. The guide clarifies that a “free-from” claim is the absence of a specific food allergen in any food and must be based on a comprehensive risk assessment accompanied by rigorous controls (which should include analytical testing). This is to ensure that the claim is valid and not misleading.”

Source location

Response from Food and Drink Federation
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Publish guidance explaining the distinction between allergen-free and vegan claims and their implications for allergy safety.

Verbatim wording from the response

“Subsequently with the rapid growth and development of vegan suitable food products, it became clear there was potential for consumers to be confused by vegan claims in terms of their allergy safety. In 2020, the FDF published subsequent guidance on ‘allergen’-free and vegan claims to explain the important difference between them. It aims to dispel any misunderstanding that a vegan claim automatically means a food product is safe and suitable for an allergic consumer, as this is not the case. Each claim communicates to different consumer groups, with only the allergen absence claim being food safety information and subject to stringent substantiation.”

Source location

Response from Food and Drink Federation
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

The majority of allergic people can safely consume free-from products, so a universal warning could mislead consumers and restrict choices.

Verbatim wording from the response

“Regarding the second recommendation - including a statement that ‘free-from’ products are not safe for all allergic consumers - we believe such an explanation should be given by practitioners and allergy clinicians, after patient diagnosis, when explaining and guiding allergic patients on how to manage their diets. The statement could have unintended consequences confusing customers and potentially contradicting what their medical teams have advised and limiting their food choices.”

Source location

Response from British Retail Consortium
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Practitioners and allergy clinicians should explain that free-from products are not safe for all allergic consumers after diagnosis.

Verbatim wording from the response

“Regarding the second recommendation - including a statement that ‘free-from’ products are not safe for all allergic consumers - we believe such an explanation should be given by practitioners and allergy clinicians, after patient diagnosis, when explaining and guiding allergic patients on how to manage their diets. The statement could have unintended consequences confusing customers and potentially contradicting what their medical teams have advised and limiting their food choices.”

Source location

Response from British Retail Consortium
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Individual retail businesses, rather than the trade association, are responsible for decisions about product labels and associated policies.

Verbatim wording from the response

“We support our members with their decision process on what appears on labels and associated policies, but it is their individual company responsibility to make the decision.”

Source location

Response from British Retail Consortium
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Existing UK-wide processes and linkages are in place to record fatal anaphylaxis deaths and support learning to reduce future deaths.

Verbatim wording from the response

“We have all the processes in place for this system of proactively recording deaths through our web of linkages in the UK which will benefit everyone concerned in learning lessons and attempting to reduce future deaths from anaphylaxis. Our extensive work has repeatedly highlighted the issue of incorrect food labelling resulting in fatal anaphylaxis and we support any initiative taken by the retail industry to improve and clarify these labels to ensure the safety of people with food allergies.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 4 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

The register cannot continue its work without further funding after unsuccessful attempts to secure ongoing support.

Verbatim wording from the response

“While many coroners have called for this function to exist, mechanisms of awareness among those who work in the field has been sub-optimal. The data collection is onerous with in-built delays. Since receiving the funding from FSA, UKFAR has made a concerted effort towards the sole purpose of the grant which was to update the backlog of cases. Due to various recent regulatory changes in data retention, UKFAR has had to update permissions. This led to a re-think and the opportunity to improve liaison with allied agencies based within and outside the NHS which will help reduce existing future such backlogs. However this funding will shortly be running out and after numerous attempts to secure continuous funding from the FSA, we have been informed we have not been successful. We then contacted the DoH directly, however they have not responded to our emails.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Ongoing funding for the UK Fatal Anaphylaxis Register is considered a government responsibility because anaphylaxis prevention is a public health issue.

Verbatim wording from the response

“This is a public health issue and therefore the responsibility of government. So much ground- work has been undertaken with the funding from the FSA, however in order to prevent future deaths from anaphylaxis UKFAR requires on-going funding now.”

Source location

Response from British Society for Allergy and Clinical Immunology
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

FSA and HSE are responsible for food policy, while DHSC is responsible for nutrition and health campaigns.

Verbatim wording from the response

“The Food Standards Agency (FSA) and the Health and Safety Executive (HSE) hold responsibility for food policy related matters. When Public Health England (PHE) became UKHSA the responsibility for nutrition and health campaigns transferred to the Department of Health and Social Care (DHSC).”

Source location

Response UK Health Security Agency
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Establishing the systems identified by the Coroner falls outside UKHSA’s remit.

Verbatim wording from the response

“Whilst we understand the seriousness of the failings leading to the death of Celia Marsh responsibility for establishing systems such as those referred to by the Coroner sit outside of the remit of UKHSA.”

Source location

Response UK Health Security Agency
Page 1 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Pathology policy responsibility lies with DHSC and the Royal College of Pathologists, rather than the respondent.

Verbatim wording from the response

“Your concerns regarding pathology have been noted, however this is not an area where the FSA has policy responsibility. I can see that your report has been directed to the Department for Health and Social Care (DHSC) and the Royal College of Pathologists who may be able to offer a response to these concerns. We are however, open to assisting other government departments where we can.”

Source location

Response from Food Standards Agency
Page 3 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Mandatory hospital reporting of anaphylaxis falls within DHSC’s remit and cannot be introduced by the respondent.

Verbatim wording from the response

“There are, however, circumstances where no, or no timely, notification is provided. In these cases, a mechanism by which the FSA is made aware of cases of anaphylaxis (fatal or near fatal) would be very helpful. You have suggested a “mandatory reporting of anaphylaxis presenting to hospitals” similar to the system in place for notifiable diseases. The FSA would not be able to introduce such as a system as it would fall within the remit of DHSC.”

Source location

Response from Food Standards Agency
Page 3 · response
Published 25 November 2022

Open published response

Other statements in published responses

These actions and other statements could not be clearly connected to one concern in this report.

Recipient-stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.5

  1. 1

    Ensure the Retained EU Law review retains current protections for people with food hypersensitivity.

    Stated by Food Standards AgencyStated plannedThe respondent said that this action was planned when they made their response on 25 November 2022.
  2. 2

    Develop and roll out local-authority training on incident management, including detection, reporting and response.

    Stated by Food Standards AgencyStated in progressThe respondent said that this action was in progress when they made their response on 25 November 2022.
  3. 3

    Produce an internal standard operating procedure for serious illness and fatality incidents, including anaphylaxis and early notification of local authorities.

    Stated by Food Standards AgencyStated in progressThe respondent said that this action was in progress when they made their response on 25 November 2022.
  4. 4

    Continue convening food businesses, consumer groups, enforcement bodies and government departments to support food hypersensitivity work.

    Stated by Food Standards AgencyStated in progressThe respondent said that this action was in progress when they made their response on 25 November 2022.
  5. 5

    Continue supporting the Food Standards Agency's work to promote consistent allergen information and food safety for people with food allergies.

    Stated by Food and Drink FederationStated in progressThe respondent said that this action was in progress when they made their response on 25 November 2022.

Recipient positions A position is what a recipient says about a concern when they do not describe a specific action.2

  1. 1

    Statements about vegan food are not a hypersensitivity issue.

    Stated by UKHospitalityDisputes the concernThe respondent disagreed with part of the concern or the basis for it.
  2. 2

    The respondent is not best placed to provide an investigation hotline because responsibility and powers for such investigations lie elsewhere.

    Stated by Food Standards AgencyOutside remitThe respondent said that this matter was outside its role or authority.

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Ensure the Retained EU Law review retains current protections for people with food hypersensitivity.

Verbatim wording from the response

“Since we published our new FSA Strategy (2022 to 2027) and workplan last year, the FSA is facing additional pressures, including significant new areas of work which in order to deliver has meant making some difficult decisions in some areas of our proposed programme. In addition to our core activities on food hypersensitivity we will ensure that the review of Retained EU Law retains current protections for people with a food hypersensitivity. In our wider food hypersensitivity programme we will focus on a smaller subset of priorities in three key areas:”

Source location

Response from Food Standards Agency
Page 5 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Develop and roll out local-authority training on incident management, including detection, reporting and response.

Verbatim wording from the response

“As part of routine improvements and drive for efficiency, the FSA is currently producing an internal standard operating procedure for dealing with serious illness and fatality incidents, which includes incidents of anaphylaxis. Our aim is to ensure we take a robust and consistent approach to such occurrences. This procedure will include detail of how we can make local authorities aware of such occurrences at the earliest time possible (if the FSA is notified through other means in the first instance). Additionally, the FSA is developing training for local authorities on incident”

Source location

Response from Food Standards Agency
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Produce an internal standard operating procedure for serious illness and fatality incidents, including anaphylaxis and early notification of local authorities.

Verbatim wording from the response

“As part of routine improvements and drive for efficiency, the FSA is currently producing an internal standard operating procedure for dealing with serious illness and fatality incidents, which includes incidents of anaphylaxis. Our aim is to ensure we take a robust and consistent approach to such occurrences. This procedure will include detail of how we can make local authorities aware of such occurrences at the earliest time possible (if the FSA is notified through other means in the first instance). Additionally, the FSA is developing training for local authorities on incident”

Source location

Response from Food Standards Agency
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Continue convening food businesses, consumer groups, enforcement bodies and government departments to support food hypersensitivity work.

Verbatim wording from the response

“Key to the success of this work is ensuring food businesses, consumer groups, enforcement bodies and other government departments work together on this important issue and the FSA will continue its role as a convener to ensure that this happens.”

Source location

Response from Food Standards Agency
Page 6 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Continue supporting the Food Standards Agency's work to promote consistent allergen information and food safety for people with food allergies.

Verbatim wording from the response

“There of course remains a need to be vigilant and to consider what else can be done so that food is labelled appropriately and can be trusted by all consumers. We will continue to support the work of the FSA as it looks to ensure consistent allergen information is provided no matter the setting, and that food is safe for people living with food allergies.”

Source location

Response from Food and Drink Federation
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Statements about vegan food are not a hypersensitivity issue.

Verbatim wording from the response

“It is clear to see that the market for vegan dishes has grown substantially over the last few years. Many businesses across the UK offer a number of vegan options on menus, with vegan restaurants continuing to grow in popularity. When making specific claims around vegan dishes, whilst it is important to provide customers with as accurate information as possible, statements regarding vegan food is not a hypersensitivity issue. However, we recognise the importance of the issues set out in your report and commit to carrying out a consultation with members in the aforementioned expert groups on managing the risk of vegan dishes for people with hypersensitivity, and reflecting any recommendations in future updates to the Industry Guidance.”

Source location

Response from UK Hospitality
Page 2 · response
Published 25 November 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

The respondent is not best placed to provide an investigation hotline because responsibility and powers for such investigations lie elsewhere.

Verbatim wording from the response

“As mentioned above, the responsibility and power for such investigations does not sit with the FSA, therefore we would not be best placed to provide such a hotline.”

Source location

Response from Food Standards Agency
Page 5 · response
Published 25 November 2022

Open published response
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Information checked against the published report and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Data last updated 7 September 2026