‘I didn’t know what anaphylaxis meant until my daughter died’

Twenty minutes after eating a meal during a family get-together in December, 14-year-old Emma Sloan was dead.

Suffering from a severe peanut allergy, the teenager went into anaphylactic shock and without the life-saving aid of an Epipen, or Anapen, collapsed and died on a Dublin street.

As the mother of an anaphylactic teenager, I was horrified to hear this tragic news and can understand why Emma’s mother, Caroline, is devastated. She is still looking for answers and is campaigning for adrenaline pens to be accessible in public places to prevent another family going through this heartbreaking ordeal.

“I didn’t know what the word anaphylaxis meant until my daughter died,” says Caroline. “We had no idea that her allergy was so serious and this is why we didn’t have the Epipen with us when we went out to dinner.

“I am in no doubt that if there had been a pen available in the restaurant or if the local pharmacy had given us one to use, Emma would still be alive: it’s a simple fact that a shot of adrenaline would have saved her life.

“This is why I have launched the Emma’s Voice campaign. I want Epipens to be available in schools, restaurants and other public places and would like to see first-responders trained in the same way they are trained to use defibrillators.

“Emma has lost her voice but I want to make sure that her death was not in vain. I have been unable to grieve for my daughter because I am so angry that she is gone, and that her death was preventable. My anger is pushing me forward to try to make changes because, compared with other countries, we are so behind on health and safety measures, and something needs to be done to make Ireland a safer place.”

Caroline, who has two other daughters, 20-year-old Amy and two-year-old Mia, says she cannot understand why the simple adrenaline devices are not readily available and why more importance is not placed on the potential danger allergy sufferers face.

“There are only two or three places in the country that cater for children with allergies, which seems crazy to me given how serious the condition can be,” she says. “There should be an allergy clinic in every county, along with training for healthcare workers, colour-coded bracelets for sufferers and adrenaline pens available anywhere that food is served.

“My beautiful daughter will never grow up, get married or have children. She has lost her life and we will never see her again, simply because this country hasn’t got the proper precautions in place.”

More accessible
Paul O'Shea is an Independent town councillor for Ennis, Co Clare. Since he heard about Emma's death almost five months ago, he has campaigned to make the pens more accessible. "It is estimated that food allergies affect as many as 25 per cent of the population," he says. "I went to the Dáil last January to highlight the need for Epipens to be made available in restaurants and hotels after receiving backing from the Irish Hotels Federation and the Restaurants Association of Ireland.

“Almost all TDs and Senators I spoke to are supportive, yet no one is being proactive in legislating for availability of these pens in public places.

“The cost of keeping the pens is about €125 in each restaurant. They have an 18-month life expectancy: that amounts to 10 cent a day to save a life. The restaurant and hotel industries have publicly indicated they are happy to invest in this lifesaving initiative. Training is available online at no cost, is relatively short and simple to follow, and the legal implications are similar to those applied to defibrillators.

“Death from anaphylaxis is preventable and these pens should be made available now to avoid another fatality. Our politicians need to act immediately and take a lead on this issue, which affects so many people all over Ireland.”

Prevent fatalities
Prof Jonathan Hourihane is the leading allergy specialist in the country. He believes that making these adrenaline pens available in public places will help to prevent another fatality.

“UCC has been trying to get a view on legislative change for this issue since 2011,” he says. “I hope the tragedy of Emma’s death will stimulate the system to allow generic pens to be available in schools and restaurants with the vital user training provided.

“Adrenaline pens are safe and easy to use but yet they are not easily accessible in case of emergency. This is frustrating when you compare it to the availability of defibrillators which are much more difficult to use, and the chance of survival of cardiac arrest is already much lower than it is for someone in anaphylactic shock.

“At the moment there is no legal mechanism to protect the administrator of an unprescribed injection, and this also needs to change.”

Along with being easy to use, the allergy specialist says the adrenaline pens are unlikely to cause harm if administered unnecessarily.

“The downside of administering a shot of adrenaline when it isn’t needed is a lot smaller than the upside,” he says. “Once the pen is injected correctly into a muscle, preferably the outer thigh, it is uncommon for someone to have a serious adverse reaction even if they have been incorrectly diagnosed with an anaphylactic seizure.

“In some cases there could be a surge of blood pressure and in adults it can cause chest pain or breathing difficulties, but the opportunity to save someone’s life far outweighs these possible side effects.

“In addition to making a provision for pens in the community, I would also like to see the HSE put in a systematic programme of clinical leadership in every region of the country, to deal effectively with allergies at a local level. The service needs to be improved greatly if we are to prevent another unfortunate death.”

Availability of adrenaline pens: the official responses
Irish Medicines Board:
Adrenaline-containing injection pens such as Epipen or Anapen are available in Ireland only as prescription medicines, according to Irish and EU law. This means that they can be supplied only to someone with a valid prescription. There is provision in the current Irish S.I. No. 540/2003 Medicinal Products (Prescription and Control of Supply) Regulations 2003, as amended, which permits pharmacists to supply certain prescription-only medicines without a prescription, in emergency circumstances. As these medicines are administered by injection, a change in the legislation would be required in order to make adrenaline-containing pens available in schools and restaurants.

Department of Health:
Adrenaline pens, as injectable medicines, may be supplied only on foot of a prescription. However, there is provision in the Medicinal Products (Prescription and Control of Supply) Regulations which permits pharmacists, in emergency circumstances, to supply certain prescription-only medicines, including adrenaline pens, without a prescription. The department is examining the possibility of amending the regulations to facilitate the wider availability of adrenaline pens without prescription in emergency situations, by persons trained in the administration of these pens. This review is ongoing.

Department of Education:
It is important that the management authority in every individual school requests parents to ensure that the school is made aware of any medical condition suffered by any pupil attending. Where the school is aware of potential difficulties that may arise as a consequence of a medical condition suffered by one or more pupils, it may be possible for the management authorities, working in conjunction with the parents, teachers and children to put preventative measures in place to lessen the possibility of any difficulties arising or to ensure that, if a pupil suffers from an illness requiring medication, appropriate treatment is available. Once the matter has been discussed in detail with the board of management and teachers of a school and once all parties are clear as to the procedures to be followed, arrangements can normally be made to administer the type of medicine which may be required.

Pharmaceutical Society of Ireland:
As a regulator, the PSI implements the law – changes in the law are made by the Oireachtas. Were the law to change, it would be PSI's role to ensure its implementation.