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Alarming Gaps in Allergy Data
Charity asks: “What does this mean for patient care?”
Allergy UK is calling for urgent action following the release of new Freedom of Information data showing that the majority of NHS England’s Integrated Care Boards (ICBs) cannot say who is responsible for treating people with allergies in their regions.
The charity is campaigning for the scale of the crisis facing allergy care to be recognised and for early intervention to improve health outcomes. Its FOI request was designed to shine light on NHS England’s understanding of allergy.
Research has shown that where allergy specialist nurses are provided, nurse-led clinics successfully manage 95% of patients in primary care, reducing waiting lists from 6–18 months to just 4–8 weeks (trial between University of Edinburgh and NHS Lothian 2017*).
A Freedom of Information (FOI) request submitted to the 42 ICBs covering England found:
- Only 9 ICBs (21%) could say how many patients in their area have been diagnosed with allergic conditions.
- Just 6 ICBs (14%) could say how many patients were referred to secondary care.
- Not one ICB could confirm they had specialist allergy nurses, dietitians or GPs with a special interest in allergy.
- 24 ICBs (57%) confirmed that patients have access to a dedicated allergy clinic – a promising increase from 14 in 2023, but still not universal.
- 45% of ICBs view data on patients with allergies as a GP or hospital trust responsibility rather than that of the ICB. This is despite the ICBs now being responsible for designing and commissioning services which are tailored to the needs of their population. Only 9, or 21%, of ICBs held this data.
- 33 ICBs (79%)are not centrally tracking infants who are prescribed formula due to a cow’s milk allergy.
- 14 ICBs (33%) didn’t answer any of our questions or said they didn’t have the information we requested.
Allergy UK estimates that there are only 40 specialist allergy nurses in the UK**, for a population of 21 million in the UK with an allergy and 4.5 million who are at risk of a life-threatening severe reaction.
Allergy is a major public health issue, with one in three people, and half of all children, in the UK now living with allergic disease. Hospital admissions for allergic reactions have risen by over 160% in the past 20 years.
ICBs are NHS organisations responsible for planning health services in local areas, responsible for managing budgets and working with local service providers on strategy.
The system they are a part of was developed to improve health and care services with a focus on prevention, better outcomes and reducing health inequalities.
Earlier this year, Baroness Merron, Parliamentary Under-Secretary of State at the Department of Health and Social Care, wrote:
In conducting health needs assessments to inform commissioning decisions, integrated care boards will have access to a wide range of data sources including public health data, hospital statistics, primary care data and social care metrics.
This data request by Allergy UK research has now highlighted serious concerns about the ability of ICBs to achieve their goals for allergy care
Simone Miles, Chief Executive at Allergy UK, said:
Three years on from the introduction of ICBs, it’s deeply concerning that the bodies responsible for commissioning services don’t know how many people with allergy need services or who is treating them. How can people with allergies have confidence that the system will commission the services they need, when it doesn’t even know they exist?
234,864 patients were recorded with allergic conditions by just 9, or 21%, of ICBs. Our FOI revealed that an estimated 800,000 allergic patients go unrecorded at an ICB level
Allergy UK is calling for:
- A specialist allergy nurse and dietitian in every ICB to ensure equitable access to care.
- The creation of a National Allergy Register, embedded within the new NHS Single Patient Record (SPR) from the outset, to ensure every clinically confirmed allergy is logged, shared and accessible across NHS services, supporting safer, joined-up, community-based care.
Simone Miles added:
Allergy services shouldn’t be a postcode lottery. We need a system that recognises the scale of allergic disease and responds with the care people deserve.
Allergy UK has ranked the performing ICBs – see the table below.
In August 2025, Allergy UK asked each ICB:
- How many patients with a coded diagnosis of allergic condition are being treated at primary care level from your ICB, data capture 1st July 2024 to 1st July 2025?
- Of the patients coded above, how many patients have been referred to secondary care between 1 July 2024 to 1 July 2025?
- Do you have access to a local dedicated allergy clinic that provides a comprehensive service for people suffering from allergic disease to go to when referred?
- How many specialists do you have supporting patients receiving care for allergies in your ICB? (specialists include nurses trained in allergy, specialist dieticians trained in allergy, and GPs with a special interest in allergy).
- How many patients have been prescribed an adrenaline autoinjector within your ICB?
- How many patients have been prescribed extensively hydrolysed formula (EHF) or amino acid formula (AAF) within your ICB? (This question relates to cow’s milk allergy and the formula prescribed for infants. The question can be read as “How many infants with cows’ milk allergy have you seen over the past year who needed formula prescribed”. 33 ICBs are not tracking the cows’ milk allergic infant population centrally.)
| NHS Bedfordshire, Luton and Milton Keynes Integrated Care Board | 5 |
| NHS Cheshire and Merseyside Integrated Care Board | 5 |
| NHS Gloucestershire Integrated Care Board | 5 |
| NHS Lincolnshire Integrated Care Board | 5 |
| NHS Bristol, North Somerset and South Gloucestershire Integrated Care Board | 4 |
| NHS Cornwall and the Isles of Scilly Integrated Care Board | 3 |
| NHS Dorset Integrated Care Board | 3 |
| NHS Mid and South Essex Integrated Care Board | 3 |
| NHS Norfolk and Waveney Integrated Care Board | 3 |
| NHS North Central London Integrated Care Board | 3 |
| NHS South East London Integrated Care Board | 3 |
| NHS Black Country Integrated Care Board | 2 |
| NHS North West London Integrated Care Board | 2 |
| NHS Shropshire, Telford and Wrekin Integrated Care Board | 2 |
| NHS Suffolk and North East Essex Integrated Care Board | 2 |
| NHS Surrey Heartlands Integrated Care Board | 2 |
| NHS Birmingham and Solihull Integrated Care Board | 1 |
| NHS Cambridgeshire and Peterborough Integrated Care Board | 1 |
| NHS Derby and Derbyshire Integrated Care Board | 1 |
| NHS Devon Integrated Care Board | 1 |
| NHS Frimley Integrated Care Board | 1 |
| NHS Hampshire and Isle of Wight Integrated Care Board | 1 |
| NHS Herefordshire and Worcestershire Integrated Care Board | 1 |
| NHS Northamptonshire Integrated Care Board | 1 |
| NHS Nottingham and Nottinghamshire Integrated Care Board | 1 |
| NHS South West London Integrated Care Board | 1 |
| NHS South Yorkshire Integrated Care Board | 1 |
| NHS Staffordshire and Stoke-on-Trent Integrated Care Board | 1 |
| NHS Bath and North East Somerset, Swindon and Wiltshire Integrated Care Board | 0 |
| NHS Buckinghamshire, Oxfordshire and Berkshire West Integrated Care Board | 0 |
| NHS Coventry and Warwickshire Integrated Care Board | 0 |
| NHS Greater Manchester Integrated Care Board | 0 |
| NHS Hertfordshire and West Essex Integrated Care Board | 0 |
| NHS Humber and North Yorkshire Integrated Care Board | 0 |
| NHS Kent and Medway Integrated Care Board | 0 |
| NHS Lancashire and South Cumbria Integrated Care Board | 0 |
| NHS Leicester, Leicestershire and Rutland Integrated Care Board | 0 |
| NHS North East and North Cumbria Integrated Care Board | 0 |
| NHS North East London Integrated Care Board | 0 |
| NHS Somerset Integrated Care Board | 0 |
| NHS Sussex Integrated Care Board | 0 |
| NHS West Yorkshire Integrated Care Board | 0 |
Case study: One family’s struggle to find information
For the Tanna family from Hinkley in Leicestershire, managing eight-year-old Shyla’s complex allergies is a daily challenge.
Two years ago, Shyla began to suffer frequent bouts of illness, her skin was very dry and she became withdrawn.
After struggling to get a GP appointment the family booked a blood test at a private clinic and the results were startling. It showed that Shyla was allergic to all nuts (and therefore at risk of anaphylaxis), tree and grass pollen, mould and pet dander, with17 allergens in total some of which were airborne. She also has allergic eczema.
Mum Deena, says:
“Our lives changed and we began searching for help and support. Even getting a basic food plan was difficult. We couldn’t find anyone to support us or give us advice.
Within a few months, Shyla had an anaphylactic reaction and the family took her to A&E for treatment. They later received a follow-up call from a paediatric allergy consultant and joined his clinic which has been a big help.
Deena says: “Allergies have changed our whole life. As well as the physical effects of allergies, there is the mental toll as well. As parents, we were really struggling to get information but at the same time trying not to worry Shyla or her older brother Bayln when we couldn’t find answers.
“I went hunting for data which I thought might help us work out what was happening with Shyla and where we could get help. There was nothing – we were left floundering.
“We were in survival mode, trying to find out everything we could. I was desperately seeking answers and couldn’t find any information or sources of help. I didn’t know which service I should approach.
“Eventually finding a clinical team and clinicians who help us has made an enormous difference.”
Shyla’s brother Bayln, aged 11, has written a children’s book called Shyla’s Secret Sadness which tells the story of Shyla, a seven-year-old girl whose allergies make everyday life feel challenging and isolating.
References
**Meeting the challenges of the National Allergy Crisisreport by the All Party Parliamentary Group for Allergy and the National Allergy Strategy Group. The precise detail can be found on page 24, “There are about 40 adult allergists and slightly fewer paediatric allergists. At present there is one adult allergist per population of 1.3 million.” There may be many specialist paediatric nurses or nurses with an interest in allergy in paediatrics in hospitals, but no ICB detailed this in the FOI responses.