Tag Archives: The Guardian

A Brewing Storm

Yesterday a social media storm hit the EGID world, especially for those of us who are, or who have been, under the care of Great Ormond Street Hospital over the last few years. The reason? A story published by The Guardian newspaper on Saturday night, which has raised questions about the treatment of patients of GOSH’s gastro department following a huge number of complaints from parents and successive reviews of care carried out by the RCPCH (Royal College of Paediatrics and Child Health) since 2015.

As a parent to a child with an EGID diagnosis and one that was given by GOSH at that, this story is heart-breaking and yet one that I know needs to be told. Whilst M has never been subject to the “aggressive treatment” described in the reports published by The Bureau of Investigative Journalism (see here and here), we have struggled with our own issues rising from some of our experiences during inpatient admissions at GOSH and I have always been open and honest in sharing these via my blog. We have made complaints, challenged M’s consultants and spent time talking to the Chief Exec to try and make sense of it all and improve the way that, not just M, but other children have been treated whilst they’re there.

Last summer I shared my fears about the huge question marks that have been hovering over the EGID diagnosis for a while and how they could impact on the treatment and care that M receives from the medics in our lives. This week my fears grow even greater as the TBIJ documentary investigating these allegations about GOSH will be aired on ITV1 at 10.40pm this Wednesday, April 18th. Whilst I know that the documentary is seeking to reveal the truth behind some of the treatment decisions made for certain families, there will undoubtedly be concerns raised about the veracity of the diagnosis of EGID itself and with that comes inevitable questions about whether any of those diagnosed with EGID are genuinely living with it, or not. Comfortable viewing it may not be, but I will be watching it – and probably keeping my eye on the resulting social media frenzy too.

At the end of the day, I’m not really that bothered about what the label itself actually is for M – EGID, MCAS, food allergies or something else – as all I want is a better life for him and the others who find themselves in the same boat. As I said last year,

“For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.”

*You can read a more in-depth, first-hand commentary about this GOSH story here

Easter biscuits and Simnel Cake

Courtesy of annapolisfork.com

Courtesy of annapolisfork.com

I’m not entirely sure what madcap idea took hold last week,  but I decided to spend part of Good Friday baking Easter biscuits and Simnel Cake for M and G to enjoy.  My experience of these 2 culinary delights is limited; I have had the odd Easter biscuit to eat in the past 30-odd years, but have to confess that I’ve never even nibbled at a slice of Simnel Cake.  What possessed me to try my hand at a cake that I couldn’t pick out of a blind taste test, I have no idea, but I was inspired to produce adequate alternatives and let M and G try some traditional treats.

I expected Simnel cake to be my biggest challenge and decided to start researching a relatively easy recipe to adapt for M.  To my surprise and absolute delight, my Google search uncovered this wonderful recipe for gluten-, dairy- and egg-free SImnel cake that was published in The Guardian newspaper on April 12th.  I don’t think I have ever seen a recipe that is so allergy-friendly in the mainstream media and I couldn’t wait to start baking.

Not bad for a first attempt!

Not bad for a first attempt!

I was thrilled with the end result and decided to decorate it in a manner that dates back to the Victorian era.  Traditionally, 11 balls of marzipan are rolled and used, with the story that these represent the 12 apostles minus Judas, though you can also use 12 marzipan balls for Jesus, the 12 apostles minus Judas.  In trying to understand the meaning behind this decoration, I discovered that Simnel cake was traditionally baked on the middle Sunday of Lent, which is also Mothering Sunday in the UK, and allows a relaxing of the 40-day fast typically followed during Lent.


First item ticked off the list and it was time to move on to the Easter biscuits.  Having grown up in the West Country, I decided to use another traditional recipe and use Cassia Oil to flavour these delicate biscuits, instead of the usual mix of cinnamon and mixed spice.  Thanks to the amazing blog, Alimentary Bites, I was presented with not just one recipe, but 2 to choose from.  I picked one at random, made a few minor adjustments to accommodate M’s dietary needs and whipped up a batch for the children to try.  There’s nothing to match the delicious smell of home-baking filling the house and G and M quickly gathered around the oven to make their claim as the biscuits emerged from the oven.


All in all, a winning baking session and 2 more recipes to add to my M-friendly repetoire. Both biscuits and cake were delicious, scored full marks from my discerning duo and disappeared quickly over the Easter weekend.  Children and adults alike complimented me on the flavour of these goodies and I’m thrilled to have successfully navigated another festival with some wonderful and safe treats.