Some months ago Pat Schooling, the director of Action Against Allergy of which I am a trustee, asked me if I could go to a European patient support allergy meeting as she would not be able to make it. I said yes, to be helpful, but my heart sank at the prospect of a day spent treading the byways of Brussels bureaucracy. But yes is yes, so off I went last week to a meeting room deep in the bowels of the rather splendid Friend’s House in Euston Road.
EFA (a neat acronym for an extremely wordy title – European Federation of Allergy and Airways Diseases Patients’ Associations) turned out to be EFA’s president, Breda Flood of the Asthma Society of Ireland and project manager Guiseppe De Carlo. And far from being stodgily bureaucratic they seem to be doing a rather splendid job on a pretty skeleton staff.
EFA’s purpose in life is to be a patients’ pressure group in Europe. Their aim is to help MEPs and members of the commission understand allergy and asthma from the patients’ perspective and, as a result, to implement changes in law and in practice which will be of practical benefit to allergy, asthma and COPD (Chronic Obstructive Pulmonary Disease) patients.
Many of EFA’s dozen or so staff are allergy and asthma sufferers themselves so are in the ideal position to provide patient input into such EU initiatives as the food allergen labelling law changes finally coming into force this month. But they also get seconded into other groups, such as the European Medicines Agency, to put the patient’s point of view when changes are being discussed. Possibly even more valuable, EFA recruits patients from their member organisations and then train them in the ways of Brussels, so that when they are called to give evidence or put the patient’s case, they know how to do so to the greatest effect.
They also use their ‘insider knowledge’ to run ‘meet and greet the EU institutions’ sessions for their member groups to give them some idea of how the EU works and how best to promote their members’ concerns. These include meetings with selected MEPS from their home countries and with MEPs who have a particular interest in allergy and/or asthma. (‘Invaluable’, according to the delegate from Asthma UK who came to our meeting and who had attended the last ‘meet and greet’ gathering.)
Using the influence of their patient group members (some 500,000 across Europe) EFA are also able to contribute significant weight as well as expertise to a range of European initiatives/projects some of which they initiate, others of which they just support. They are, for example, a lead organisation in a current drive to dramatically increase the provision for both pre and post graduate medical education in allergy, pressing MEPS to legislate for:
1. The formal recognition of a full medical speciality in Allergology and of a formally recognised sub-speciality of Paediatric Allergology throughout EU member countries.
2. The increase in quality and the harmonisation of education for allergists and primary care physicians.
3. The development and implementation of an educational model of Allergology in Medical Schools across Europe. Every medical student should participate and perform a course of Clinical Allergology as a requirement in every medical school across Europe.
Other recent or on-going projects include a COPD awareness and cooperation project which includes the issue of taking oxygen on airplanes (currently more expensive than buying the ticket!) and a number of other respiratory related initiatives.
Membership of EFA includes tiny volunteer organisations (who can join for free but do not have a vote) to large national groups such as Asthma UK or Allergy UK (both attendees at our meeting), all of whom can both contribute to and benefit from the group. An excellent arrangement! I would recommend any patient organisation to check out their website – and then to join!