Oireachtas Joint and Select Committees

Tuesday, 24 June 2014

Joint Oireachtas Committee on Health and Children

Provision of Epinephrine Auto-Injectors: Discussion

5:30 pm

Ms Caroline Sloan:

Emma is my child. She will forever be 14 years old. I loved her from the day she was born and I watched her grow into a beautiful young woman. Emma was bright, beautiful, smart, funny and kind. She was so kind to others in her short life that I am very proud to be her mother. Emma lived her life to the fullest. She was headstrong and she knew her own mind. She had many plans for her future, which included doing her junior certificate, becoming a stylist, getting loads of tattoos and having a family of her own. I was sure she would achieve all of this and more. Instead, Emma died on a cold street corner one week before Christmas while we watched helplessly. She was looking forward to Christmas, her new telephone, and her tickets. All her presents still sit wrapped in a box in a press. I only ever got to spend one Christmas with all three of my children.

Emma's death has been described many times as a tragedy but for me that is not the case because a tragedy is something unavoidable. Emma's death was avoidable. Had we had the correct information and education about her allergy, and had we had access to an EpiPen, Emma would be with us today. That is the reason for the campaign.

The first aim of the campaign is to free up the availability of EpiPens. They should be in every first aid box in the country. There is very little training required in the use of these pens. They cost 10 cent a day to keep which could make the difference between life and death, especially for people as yet undiagnosed with allergies. The second aim is to have all allergy sufferers supplied with ID cards or bracelets. This would be of benefit for two reasons, one can walk into a chemist and be given a pen and someone else can easily identify what is happening to a person who goes into anaphylactic shock and is not able to administer the pen him or herself. There is a scheme in Scotland under which pharmacists have an orange light and will administer treatment for anaphylaxis. While this is a step in the right direction it is not practical unless one has the reaction in the vicinity of a chemist. As we are all too aware since Emma's death, time is not on our side.

This country should follow in the footsteps of America where last year President Obama signed legislation to encourage all schools to stock EpiPens following the death of two children. Canada is also introducing this measure state-by-state, which has already saved lives. We are also campaigning for an allergy clinic in every county in Ireland. Until recently Professor Hourihane was the only allergy specialist in the country. He was based in Cork. Recently an allergy specialist has been appointed in Our Lady's Hospital in Crumlin. The waiting time for an appointment is one and a half years. How many children could die in that time and why are there not better services for children with allergies? Had Emma been referred to a specialist, given the results of her allergy test and given an allergy management plan she would be alive today. We knew the importance of having her asthma inhaler and carried it everywhere. Had we known the importance of the EpiPen we would have carried it everywhere. We were never told Emma's nut allergy was fatal.

Since starting this campaign a little over seven weeks ago we have collected over 60,000 signatures, including 10,000 on-line. The support from people across the country has been amazing in promoting the campaign and collecting signatures. Many of Emma's friends have been involved every week, attending various events and locations to promote the campaign, and collecting signatures. Everywhere they go people who sign the petition express shock and outrage at the circumstances of Emma's death and see the aims of our campaign as common sense.

The campaign has also received support from the Restaurants Association of Ireland, the Hotels Federation of Ireland, Dublin Fire Brigade and Ambulance Service and Deputies and councillors all over the country. Emma died because we were denied access to a life-saving injection. We will continue to fight for Emma and have her voice heard until the changes are made to ensure this never ever happens to another child or family because she gave her life for this.

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