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How the groups started

St Mary’s child health experts set up new food allergy support group for parents - 04 April 2012

A mother whose 17-month-old son is allergic to at least 10 different foods has welcomed a new parent support group set up by child health experts at St Mary’s Hospital.

 
  Press release - Alexa Baracaia with her son Sidney

Alexa Baracaia said her son Sidney’s food allergies have a huge impact on their family life and the new group will provide a welcome source of support.

The group is thought to be the first in the country facilitated by a hospital allergy clinic. The first of 12 monthly meetings is taking place on Saturday 21 April in Ealing and it will be hosted by Dr Robert Boyle, consultant paediatric allergist, and Katherine Phillips, from the allergy team at St Mary’s.

Subsequent meetings will be attended by Katherine and paediatricians, other specialist nurses and dietitians from the hospital to provide expert advice while parents share tips on ‘free from’ recipes, useful websites, where to eat out, and daily practical issues to do with food allergy.

 
 

The success of the project, which has been supported by a £30,000 grant from Imperial College Healthcare Charity, will be assessed after 12 months and St Mary’s allergy team may seek further funding if the initiative is found to have been measurably beneficial to parents.

Alexa, a freelance journalist from Stoke Newington, said: “Sidney’s allergies have a huge impact. We can’t safely take him to any café, restaurant or children’s party and know that he is ok to eat the food there. Places that are genuinely allergy-friendly and aware of cross contamination seem few and far between. As a result, we can’t leave the house without a bumper bag of homemade, allergy-safe meals and snacks, as well as Sidney’s EpiPen (a device that administers adrenaline to combat severe allergic reaction) and antihistamine drugs

“The support group is a great idea. Parents need to talk to other parents about how they cope, which foods they’ve found to be safe, which places to eat are allergy-friendly, the decisions they’ve made about nurseries and schools – all the practical day-to-day stuff that having a food allergic child entails.”

Sidney was diagnosed at St Mary’s Hospital after having an allergic reaction at five months old. Alexa said: “Sidney had been diagnosed with eczema early on and while I was eating scrambled eggs for breakfast I was rubbing in his eczema cream. The next thing he was covered in hives and had swelling around his neck and mouth.

“It was terrifying but my husband has a history of allergies so we knew to call an ambulance and Sidney was taken straight to A&E.

“We had no idea what caused the reaction as Sidney was solely breastfed at that stage, but at St Mary’s Dr Boyle identified the egg issue almost instantly when we explained what we’d been doing that morning. A trace of egg had got onto Sidney’s skin and sparked the allergic reaction.

“Skin prick tests confirmed the egg allergy as well as others including banana, seasame, wheat, peanuts, tree nuts and green peas. Since then we’ve returned to St Mary’s for more tests and hospital test challenges. Dr Boyle is wonderful – helpful above and beyond the call of duty and his manner is brilliant, always sensible yet sunny.

“The nurses and dieitians in the department are also fantastic: they’re very thorough and attentive, and quick to answer any questions. I’d recommend St Mary’s to anyone. For us it’s a little hike across London but well worth it for the attention and advice we’ve received.”  

She added: “There’s a lot of misinformation about food allergy. It gets mixed up with intolerances, digestive disorders, faddy diets and all sorts. Many people don’t take it seriously enough or don’t understand what they can do to help.

“There are remarkably few practical resources for families coping with severe or wide-ranging allergy. A local parent support group can make a big difference, for example persuading a local café or supermarket to improve its allergy-friendly food provision. The more people who can join together to raise awareness and share their own tips to make life safer and easier for kids with allergy the better.

“Having a food allergy diagnosed isn’t just a medical issue. It can be a massive emotional shock to a parent and to have a network of support is invaluable.”

Running in parallel with the group will be a web discussion forum and designated website at www.allergysupportgroup.org.uk

Dr Boyle said: “We’re delighted to be able to set up such a useful resource for parents of children with food allergy.

“Parents of food allergic children can have greater knowledge about some things – such as local places to eat or where to buy ‘free from’ food – than healthcare professionals and may be best placed to advise and inform other parents. We are pleased to be able to put them in touch with each other.”

The Anaphylaxis Campaign, the UK charity which focuses on helping people with severe allergies, provided advice to St Mary’s allergy team on the project.

The charity provides practical help and has an online course ‘Allergywise’ to help individuals, families and carers. It also runs workshops and support groups for families and parents.

Lynne Regent, chief executive of the Anaphylaxis Campaign, said: “We are delighted to support St Mary’s team in setting up this important initiative, which is a great supplement to the services already available and which will be of great benefit to those who attend the allergy services at this hospital.”

Katherine Phillips said: “We hope this is going to be the first of many support groups for parents run by allergy clinics. At St Mary’s we see 4,000 children with allergy a year and many parents want a forum to share their experiences which they find really helpful.”

St Mary’s are planning to launch a second support group for the Stoke Newington area this summer. Details will be announced on the website www.allergysupportgroup.org.uk, and on Alexa’s blog: www.yesnobananas.wordpress.com

Notes to editors

  • For more information about the support group, visit www.allergysupportgroup.org.uk
  • St Mary’s Hospital has one of the biggest paediatric allergy services in the country. We see about 4,000 patients a year for a range of allergies including asthma, eczema and food allergies
  • Food allergy affects five in 100 children in the UK and appears to be increasing. Food allergy happens when the body’s immune system reacts to an ingredient that is harmless to most people and symptoms occur within minutes of eating the food. The most common food allergies are egg, milk and nut allergy
  • Alexa Baracaia writes a blog about her experiences of being a mother of a food allergic child: www.yesnobananas.wordpress.com
  • For further information about Imperial College Healthcare Charity, please visit www.imperial.nhs.uk/imperialcharity
  • Imperial College Healthcare NHS Trust comprises Charing Cross, Hammersmith, Queen Charlotte’s & Chelsea, St Mary’s and Western Eye hospitals. It is one of the largest Trusts in the country, and in partnership with Imperial College London, is the UK’s first Academic Health Science Centre (AHSC). It has an annual turnover of around £900 million
  • Imperial College Healthcare is one of eleven NIHR Biomedical Research Centres. This designation is given to the most outstanding NHS and university research partnerships in the country; leaders in scientific translation and early adopters of new insights in technologies, techniques and treatments for improving health
  • Imperial College Healthcare has some of the lowest mortality rates in the country according to the Dr Foster Guide – an annual, independent report published 2011
  • The Anaphylaxis Campaign is the only UK wide charity to meet the needs of the growing numbers of people at risk from severe allergic reactions by providing information and support relating to foods and other triggers such as latex, drugs and insect stings. To find out more about their support groups, visit www.anaphylaxis.org.uk or contact the helpline number 01252 542029

For media enquiries: soraya.madell@imperial.nhs.uk
For patient enquiries: http://bit.ly/ns48k9

A helpful parent perspective blog: http://yesnobananas.wordpress.com/

 
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News | Anaphylaxis campaign

www.anaphylaxis.org.uk

We had a really amazing response from parents of food-allergic children, over 60 enquiries came in, and we shortlisted 23 people. Many thanks to everyone who applied. We have n

 
 

 

 

 

 

 

 
 

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With thanks to ICHC for funding this Support Group Project.