Four years ago the allergy research charity, FAIR, pioneered some excellent work assessing the prevalence of food intolerance in the community and offering simple and cost-effective treatment. But Primary Care Trusts were not prepared to fund the relatively modest training costs for practice nurses to run the programme, so it continues to gather dust on the shelf. Now FAIR has decided to offer the programme, free of charge, to any group who can make use of it within their area. Michelle Berriedale-Johnson explains.

The Foundation for Allergy Information and Research (FAIR) is a charity which seeks to 'advance the understanding and management of patient symptoms arising from food allergy and intolerance' by working with researchers and the medical profession in any way that looks as though it might deliver benefit. They currently fund research projects at King's College London and the FAIR database which holds over 100,000 references to research papers, reviews and reports related to allergy.

In 2005, concerned by the lack of information on food intolerance at GP/primary care level, the foundation funded Professor Jane Ogden of the Department of Psychology at the University of Surrey to conduct a two-year practice nurse programme to attempt to establish the extent of the need amongst the community.

The idea behind the research was that if some very basic help and advice were available at their GP’s surgery for those who felt that their health problems were caused by a food intolerance, the simpler cases could be dealt with there and then leaving the more complex cases to be referred on to the appropriate specialist.

At that time (and this has not really change in the intervening six years) those who felt that their ill health might be due to a food intolerance could neither get, nor expect to get, very much help from their local health service. As a result they frequently self-diagnosed and restricted their diets. While this may be harmless, or even beneficial for some, there remains a danger that some may restrict their diets unnecessarily or inappropriately, thereby failing to get adequate nutrition, or that some more serious underlying cause for their ill health may go undiagnosed and therefore untreated.

Doctors' views
Preliminary in-depth interviews with GPs suggested that although they recognised the existence of food allergies, and they accepted food intolerance as a factor in some recognised conditions, they were sceptical about the more generalised non-specific intolerance of which some of their patients complained.

However, where they were unable to identify any other organic cause for the patient’s malaise, they were prepared to use the term ‘food intolerance’ as a non-specific diagnosis. In the interests of maintaining a good doctor–patient relationship, they did try to work with the beliefs of patients who perceived themselves to be food intolerant, although they felt that neither they nor the NHS really had suitable services to help.

The research
Professor Ogden would engage two research assistants and four nurses, each of whom would undergo a basic training in food allergy/intolerance.

Each practice would then offer a clinic (half a day/one day once a week/month/three months) according to need. Patients would be offered relatively long appointments during which a detailed history would be taken. Based on their medical and dietary history all patients would be put on a ‘healthy eating’ diet which excluded all additives, and reduced junk food, sugar and fat, for a two-week period.

After two weeks they would return for re-assessment and if they had not got any better (see below) they would be put on a wheat and dairy-free diet for two weeks. If, on the elimination diet, they were still no better they could be referred on for further investigation.

Evaluation
To evaluate the feasibility and usefulness of this service the researchers first developed a postal questionnaire, which went to 6,500 patients and which was returned by approximately 2,400, of whom 377 (18%) reported food allergy and 734 (33.5%) reported intolerance. The most commonly reported culprit foods were shellfish, fruit, nuts and eggs (for allergy) and dairy and grains (for intolerance). Very few of them had taken any sort of tests or sought any help from the health services, but of those reporting food intolerance, 70% said they would be keen to attend a food intolerance clinic.

In-depth interviews were then conducted with some of the patients who had reported food intolerance symptoms. Most were self-diagnosed as a result of talking to friends or reading a book or article, and most had found that their symptoms improved if they avoided specific foods. The most common symptoms were stomach and bowel problems, tiredness and headache/migraine.

Evaluation – in practice
The four practice nurses working in the four GP practices in Birmingham, Glasgow, East Anglia and London, were given basic training in food allergy and intolerance, general nutrition and ways to help patients to change their behaviour and dietary alternatives. Nurses were given guidelines to which they could refer during consultations.

Notifications about the clinics’ existence and invitations to attend were made through the initial questionnaire, posters, leaflets and fliers displayed in the GP practice waiting areas and through GP referral.

Patients using the service got either three or four one-hour clinic visits – a very generous amount of time compared to normal doctor visits.

Stage 1 – Healthy eating
The first visit was spent taking a detailed history of the patient’s eating habits and general life style. It was found that many patients had very poor dietary habits, excessively high in additive-laden junk foods, short on fruit and vegetables etc.

All patients were given a healthy eating/healthy living plan, advised to drink lots of water and reduce their intake of processed, fast and take-away foods, fats, salt, alcohol, sugar, chemicals and additives and to eat regular meals including plenty of fruits, vegetables and fish.

Of the 150 patients who completed the clinics in the four practices, 92 reported feeling significantly better after spending two weeks on the health eating diet. Of the 119 patients who were followed up after three months, 90% said that they had tried to continue to follow the healthy eating diet.

Stage 2 – Wheat and dairy-free diet
The patients who returned to the second clinic but did not feel any better after the two weeks' healthy eating - 44 out of the original 150 - were then put on a wheat and dairy-free diet for two weeks. They were given recipes, suggestions for alternative foods and advice on how to cope with an elimination diet.

When they returned at the end of the two weeks, 49% felt that their symptoms had improved on the elimination diet. Three months after the second clinic visit, of the 37 patients who were successfully followed, 60% reported trying to stick to the wheat and dairy-free diet.

Effectiveness and usefulness of the programme

Cost effectiveness

Although the clinics were relatively ‘expensive’ in terms of the nurses’ time, treatment was, after the initial investment in training the nurses (approximately £400 for a 6-week training) and paying for printing a few diet sheets, cost free.

Patient satisfaction and reduction in GP visits

Out of the 150 patients who took part in the study, a total of 93 felt that their symptoms had improved. Thus, nearly 62% of the patients who took part in the study both felt better and, if they had previously taken their problems to their GPs without a satisfactory outcome, could now be discharged.

Identification of other medical problems

Although this was not the purpose of the study, the outcomes also meant that any of those 150 who patients who failed to respond to either intervention could be identified as needing further investigation for what could be a more serious problem.

Take up

Although the take up on the clinics was not massive (281 patients in total) expectation of help from their local health service by those with perceived food intolerance is extremely low. Were such a service to become established it would be reasonable to speculate that take up would increase as its existence became known.

Roll out into primary care – or not...

The work that Professor Ogden and her colleagues did to set up the study provided an excellent blue print for a rollout of such a service on a much wider basis. The manual that came out of the study provides basic food allergy/intolerance training and comprehensive guidance notes for clinic management and session: questionnaires, healthy eating plans, exclusions diets, meal and recipes ideas, guidance on reading food labels and patient symptom charts.

Unfortunately, although the programme was peer reviewed, accredited by the Royal College of Nursing and welcomed by the nursing community, Primary Care Trusts were not willing to undertake the the nurse training costs and it was not financially viable for FAIR to undertake nurse training across the country. As a result, this excellent initiative has sat on the shelf, unused, for the last four years.

Progamme now available to groups who could make use of it

FAIR has therefore now decided to make the manual which came out of the research project, 'The Food Clinic – Nurse Training Manual' available, free of charge, to any group who could make use of it. The only requirement for use is that the manual should be acknowledged as the 'FAIR manual - The Food Clinic Nurse Training Manual.'

To access the manual please click here. If your browser does not automatically download the document to your computer, just 'save as' to wherever you need it and it will download for you.

If you have any problems in downloading the manual please contact FoodsMatter; if you have any queries about the manual, please contact FAIR.

Report on the research first published in 2008; updated 2012

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