The Heather Preen Trust is publicly campaigning to raise awareness about the danger associated with particular strains of E. coli. Tracey Khanna reports

On 8 August 1999, a happy family holiday turned to tragedy when eight-year-old Heather Preen, from Rednal in Birmingham, became infected with the potentially fatal E. coli O157 strain and died after suffering kidney damage (EHN, August 20, page 4). At least four others were affected by the same strain, but there were no other fatalities. The cause of the outbreak, in Dawlish Warren, south Devon, remains a mystery to this day, but investigations by EHOs at the time centred on the town's blue flag beach. At the coroner's inquest, Ben Hosford, chief EHO at Teignbridge DC, said: "We are pretty sure there was a point source of contamination on the beach, we believe by an animal, bird or person." However, some believed that the source of contamination was from sewage from an overflow pipe one mile from the beach.

"After Heather was buried", explains 33-year-old Julie Preen, the little girl's mother, "the local community donated a substantial sum of money to the family. We wanted to do something positive with the donations, but felt that donating the money to a hospital, for example, would not have an effect on what we really wanted to achieve - solving the problem."

After a lot of thought, Julie set up a charity - the Heather Preen Trust - with two local headteachers to raise awareness on Haemolytic Uraemic Syndrome (HUS) and verotoxigenic E. coli (VTEC) infections such as Escherichia coli O157 (E. coli O157). One thing that the Trust founders wanted to do was to organise a conference to look at the main issues. "We got a group of experts together to sit round a table and advise the charity on what it should be doing and what sort of information leaflets it should be creating" says Julie. That group of experts includes Professor Hugh Pennington of the University of Aberdeen, Dr Sarah O'Brien, head of gastrointestinal diseases at the Public Health Laboratory and Barrie Trevena, EHO and author of a number of papers on E. coli O157.1, 2, 3

In August last year, the Trust originated a census meeting of experts where key messages for the general public and relevant health professionals were agreed. This led to the release of two information leaflets: one for health professionals and pharmacists which describes the causes of VTEC, who is most at risk and how good hygiene can reduce infection risk and cross-contamination; and another, aimed at the general public, which focuses on the key symptoms of VTEC infection and contains a simple checklist.

One of the main things that has alarmed Julie the most is the number of people she has encountered since Heather's death that have experienced the symptoms of VTEC themselves, or have had a family member suffer, yet the primary health carers concerned have not been able to act upon the symptoms properly. "The Trust leaflets empower parents to demand proper referral to GPs for stool sampling and treatment," she explains. "The leaflets explain how to deal with infections and secondary infections and, more importantly, what action to take if you suspect someone in the family has become infected."

There are two major issues that Julie believes the Trust has to address head on: "An issue that has not been raised before is that of understanding in pharmacies," Julie says. It is widely recognised that most concerned parents are likely to take a child suffering from diarrhoea to the chemist before visiting a GP. "Pharmacists can spot the symptoms at an early stage if they are well enough informed," insists Julie, "they can then send the patient straight to a GP for a stool sample". However, as in Heather's case, GPs themselves do not necessarily recognise the symptoms and are thus not always responding with the right action or treatment. There have been other cases apart from Heather's where the symptoms of E. coli O157 have not been recognised by doctors until too late.

According to Julie: "The excuse that a GP may have never previously seen a case of E. coli O157, or may never again, is simply not acceptable to the Trust, nor is the excuse that there is no treatment available." She goes on to say that: "The fact that there can be a secondary infection is reason enough why the general lack of action from GPs is not acceptable."

Another issue that the Trust is keen to address is that of package labelling on diarrhoea remedies. It is attempting to force drug companies to place a warning on packaging that if there is blood present in the diarrhoea that the patient must visit a GP immediately. However, this is something that the companies concerned appear to be loath to do at the moment.

As for the future of the Trust, it will work this year to promote personal hygiene in schools - not just for E. coli, but for all infectious diseases - and to get this issue onto the National Curriculum. The Trust is organising a national drama project for school children that will help educate them about potential sources of contamination, both in the environment and in the food they consume, in a fun and entertaining way. Another planned project for 2002 is to set up the UK's first foundation for infectious disease. However, while the Trust was generously sponsored by Domestos at its inception, funding is beginning to run dry.

Nevertheless, Julie is determined that others should not have to go through what the Preen family has: "When Heather died we knew nothing about VTEC, E. coli O157, or HUS, or about how the organism was contracted. Through the work of the Trust, we aim to disseminate information and advice to ensure other families never have to endure the loss of a child through VTEC." She goes on to say that "the new checklist will help parents make informed decisions as to whether or not their child may be suffering from anything more than normal diarrhoea and advise them of what action to take."

As for local authorities, the EHOs investigating the outbreak in Dawlish Warren were heavily criticised at the time of the inquest for concentrating too much on what the family had eaten and not taking environmental matters seriously enough. Everyone involved in the Heather Preen Trust is committed to making it successful in its ultimate aim - finding a cure - but it needs more support.

REFERENCES
1 Trevena, W B et al., "Transmission of Vero cytotoxin-producing Escherichia coli O157 infection from farm animals to humans in Cornwall and West Devon", Commun Dis Public Health, 1999; 2: 263-8.
2 Trevena, W B et al., "Vero cytotoxin-producing E. coli O157 infection associated with farms". Lancet 1996; 347: 60-1.
3 Trevena, W B et al., "Vero cytotoxin-producing Escherichia coli O157 associated with companion animals". Vet Rec 1996; 138: 400.

If you have any enquiries or you have any sources of information that would be of help to the Trust please contact: the Heather Preen Trust, 42 Kendal Rise Road, Rednal, Birmingham, B45 9PX, UK. E-mail: juliepreen@aol.com or visit the website: www.heatherpreentrust.org

THE E.COLI TASK FORCE

In September last year, it was announced that Professor Bill Reilly of the Scottish Centre for Infection and Environmental Health (SCIEH) would be leading an E. coli Task Force to examine and report on practical measure to protect the public from this potentially dangerous bug.
The task force is being sponsored jointly by the Food Standards Agency Scotland and the Scottish Executive. Following on from evidence showing that infection from E. coli is originating from environmental sources and human contact with animals, as well as through contaminated food, the study aims to further investigate and consult on these newly identified sources of infection.
The Task Force brings together experts from a number of fields including: microbiology, public health (medical), environmental health, veterinary interests, farming, water supply, consumer groups, the food industry and other interested organisations.
A series of themed meetings took place between September 2000 and January 2001 (for planning, human health, farming, food chain and risk assesment and communication) and it is anticipated that a full report will be published by May 2001.
For further information, contact the Secretariat on Tel: 0131 244 6427, Fax: 0131 244 6445, or E-mail: ecolitaskforce@scotland.gov.uk

ESSENTIAL FACTS

What is E. coli?
Escherichia coli (E. coli) is a group of bacteria which commonly inhabits the gut of warm-blooded animals, including humans. Most strains of E. coli are harmless, however, some strains can cause severe illness or even death. Pathogenic E. coli strains, such as E. coli O157, produce a potent (vero-)toxin which causes haemorrhagic infections in the colon, resulting in bloody diarrhoea or life-threatening complications such as kidney failure.

Who is most at risk?
Young children and the elderly are most at risk following infection, and can suffer life-threatening complications such as haemolytic uraemic syndrome (HUS) which is the most common cause of acute renal failure in infants and young children.

What are the sources of infection?
The wide-held scientific view is that E. coli is transmitted to humans principally through the consumption of contaminated food, such as raw or undercooked meat and meat products and raw milk. While food remains an important means of human infection, recent research has concluded that the environment plays a greater role as a source of infection than was previously thought. There are now known to be several modes of transmission: animal-to-person (direct or via food) and person-to-person. This is facilitated by the fact that the infectious dose is very small indeed.

How many cases occur annually?
In 1999, 1,429 cases of VTEC O157 were confirmed by the PHLS Laboratory of Enteric Pathogens (LEP) and the Scottish E. coli O157 Reference Laboratory. The majority of cases are sporadic (source: MAFF web site: www.maff.gov.uk).

Is the infection treatable?
Therapeutic options are very limited, and usually involve monitoring and maintaining body fluid and electrolyte balance and monitoring for the development of HUS.

How can you help prevent infection?
Standard hygiene measures which will help prevent infection include:
- washing hands thoroughly with hot soapy water before and after preparing food, after visiting the toilet, before eating food and after contact with farm animals or their faeces (on farm gates etc);
- disinfection of food preparation surfaces;
- ensuring all meat is cooked thoroughly before consumption;
avoiding unpasteurised milk and milk products; and
- not drinking or swimming in water that may be contaminated.