Dr. Patrick Doorley:

I would like to speak briefly about some of the Coeliac Society's recommendations, which we will also take up with the HSE. These recommendations are aimed at ensuring services for people with coeliac disease are more equitable and at improving the outcomes for people with coeliac disease.

First, a coeliac disease register should be established. Such a register would continuously record and update data on individuals who have coeliac disease, including their age, gender, duration and nature of symptoms at the time of diagnosis, associated diseases such as diabetes type 1, thyroid disease, osteoporosis and others. Analysis of registry data would increase knowledge of the disease, help facilitate research and audit and improve outcomes for people with the condition. All data on the register would be anonymised, stripped of personal identifiers and access to the register and management of it would be in strict compliance with data protection regulations. The best example of a register which has helped to improve outcomes for people is the national cancer registry, although that is on a much greater scale than what we are seeking. We are also aware of the cystic fibrosis registry, which has also been very helpful. We are well aware that there is a great deal of work involved in establishing and maintaining a disease register.

Second, there is a need for a policy on targeted screening, which would be community and hospital-based, of people who are apparently well but have first degree relatives with the disease and of people with associated illnesses who would be at higher risk of having coeliac disease. In the first instance, a blood test would be carried out and then to confirm a diagnosis a biopsy would be undertaken. We recommend this because, as already stated, there are probably more people with coeliac disease who have not been diagnosed than there are people who have been diagnosed as having the disease.

Third, we recommend the introduction of practice guidelines and audit. Clinical guidelines are aimed at helping professionals to implement best practice and to make the best clinical decisions for their patients. They are based on evidence of what best practice is and do not remove the need for clinical judgments to be made. It is expected that clinicians, including doctors, nurses, dietitians and others, would operate broadly within those guidelines. The organisation of health care affects outcomes for patients. As such, this should also be the subject of guidelines. We recommend that a national guideline be adopted. However, there are a number of alternatives to this, including development of the guideline ab initio, which is a fairly painstaking task and takes about two years to do or a guideline could be taken from another jurisdiction and adapted for Ireland. We believe this would help in greatly standardising practice and would improve outcomes for patients with the condition.

We specifically recommend the establishment of a network of hospital-based coeliac clinics, which would be staffed by consultants, gastroenterologists with a special interest in coeliac disease, as well as dietitians and nurses with special training. Doctors would be encouraged to refer patients to these clinics, which would operate on the basis of best practice guidelines. I again make the analogy of the cancer programme under which cancer treatment has been centralised in eight centres, although I am not suggesting we need to establish eight clinics. That is a matter for further discussion. We believe the establishment of these clinics would ensure a higher quality service for people with coeliac disease. It is much easier to implement guidelines in two large centres where there would be a designated clinician who would lead audit of the practice therein.

Next is the issue of access to nutrition care through HSE dietetic services. Dietetic services in this country are generally seriously inadequate. Dietitians provide services for a range of categories of patients in hospitals and in the community, including, for example, people with cancer, heart disease, obesity, diabetes, malnutrition, particularly in older people, and people with coeliac disease. Diet is obviously a key issue in coeliac disease. All best practice guidelines recommend that people newly diagnosed with coeliac disease have a one-to-one consultation with a dietitian and at some intervals afterwards, especially if a question arises in regard to non-compliance, which might be inadvertent, with the diet. Unfortunately, one-third of our 380 primary care teams do not have access to a one-to-one dietetic service and approximately half of them have access to one for only a half day or one day a week. This is inadequate. The Coeliac Society recommends that recruitment of dietitians be given much greater priority in the health services. We know that this will not happen today or tomorrow and so recommend that in the mean time - we have raised this in discussions with the HSE - we explore how best the resources we have can be used to better effect. For example, group sessions could be established and dietitians could be required to train other health staff such as public health nurses in dietetics generally and, particularly, in regard to coeliac disease.

The next issue is policy on the availability of gluten-free food in health care institutions. Some of our members have told us that they have been served food in health care institutions that was obviously not gluten-free.

That is not acceptable. We recommend therefore that there should be training for all staff involved in the cooking, preparation and serving of food and that, furthermore, this training should be as a team because people have to work as a team to do that.

I will give the members some examples. Contamination can occur very easily in kitchens where ladles are used for non-gluten free sauces and so on. If gluten free bread is put into a toaster that is used for other bread that can be contaminated. Also, the meal could be served to the wrong patient. Some people know their disease very well and they will say that to staff but others might not. There are people in the health institutions who are not able to speak up for themselves.

This is a big issue and we believe there should be written protocols, which would be stronger than guidelines, because there are certain things we simply must do with regard to serving gluten free food in every institution, and the training should be mandatory.

On the funding for the community outreach programme, the society has already applied for a full-time person to run a community programme. The society has a very small number of staff in Carmichael House. We want a community worker or somebody with that kind of training to head up a community programme educating people with coeliac disease, perhaps in group sessions but also linking in with the dietetic services. We would like to take on one full-time person.

In terms of our overall approach, the members are probably aware of the Healthy Ireland strategy. Our approach is to improve the level of health and well-being at all stages of life; to improve early detection of coeliac disease; to allow for successful intervention through community-based services; and to increase the degree to which associated diseases with coeliac disease such as those we mentioned already can be prevented.

Some of these actions we are recommending are highly cost-effective. Dietetic services, for example, are low tech and low cost compared to many other interventions in the health services and the outcomes are extremely beneficial, including the prevention of osteoporosis and other illnesses I have mentioned already. We hope to have a meeting with the Health Service Executive soon where we will raise all of these issues.