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

5 thoughts on “A Brewing Storm

  1. Tina Tubey

    Here here hit the nail on the head…as you say whatever diagnosis just let our chikdren be well this is a something that isngoing to rumble on yet we still are unclear as to the bigger picture. I have lost all confidence in medical profession. I may well use some of your quotes if allowed when writing a status on fb for family and friends prior to the airing of this on Wednesday if you dont mind.

  2. Kate Bennett

    I’m also very dubious about tonight’s documentary. As a mother of two children with EGID ( or whatever the label is) I’m aware it’s a very real and difficult problem. My family has put their faith in gosh since 2011, so we’ll see what comes of this. At the end of the day it’s about our children which put up with the vast spectrum of problems (we are personally under 9 different medical teams), which come with this disorder whatever it’s title and also the daily challenges the parents face. I have so much respect for the families who deal with this, life can be far from normal. As you say let’s hope and pray for a healthier and better future for these amazingly resilient children.

    1. bluesingingdragon Post author

      Thanks Kate. Who knows what will happen next as a result of all this, but my fears remain that M will be the one who suffers alongside others with the same experiences and diagnosis. Stay strong – from one EGID Mum to another. Rx

  3. Pingback: #NEAW2018: E is for Educate | 7 years to diagnosis

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