Saturday, 23 May 2020

An emergent disease or a matter of convenience?

Note:- This was written in 2018, but has bizarrely republished today. Worth a read - but in context!

Supporting, treating and establishing good practice for an emergent disease is never easy. It takes individuals and teams taking a leap of faith in trying new strategies, putting their heads above the parapet and bidding for funds for research to support new theories. This last is a gargantuan task - as I've stated previously on this Blog, less that 1% of all research funding goes on gastrointestinal conditions. Absolutely NONE goes on paediatric gastrointestinal conditions. Although eosinophilic disorders do indeed affect adults (my father has EoE) adult treatments are less controversial.

In the UK, few medications are licensed for under 12s. Tertiary level consultants can, however prescribe the, - and many do, it's surprisingly common. But prescribing medication for an emergent disease in under 12s is VERY challenging, and should always be carefully monitored.

My Recipe Blog Stats bear out the fact that many come across the Recipe Resource looking for information on EGID - Eosinophilic Gastrointestinal Disease. I therefore felt in particular I need to write something to give the little information those in the EGID community have to my readers.

Great Ormond Street Hospital for Children is the tertiary referral centre for many who suffer allergic gut complaints, and have over the years established themselves as a centre of expertise on EGID, trying to define it, better understand it, quantify it and treat it. Because it is such a newly defined - and  even controversial disorder even consultants at GOSH have not agreed about treatment and - much to the consternation of families - patients with very similar presenting symptoms have been treated in very different ways. Medications not licensed for EGID have been used to suppress symptoms - very successfully in many cases, and attempts have been made to work with hospitals in the USA to research into this condition and underpin new treatments.

A few years ago I attended an APG seminar on EGID.  It was hugely enlightening and hopeful. It felt we were heading in the right direction with our understanding of this newly defined condition. EoE is fairly well recognised, but EGID affecting the bowel less so. As a founder member of the GOSH Gastro Parent Network I decided to write this to help explain EGID to my readers.

The advice from APFED on EGID is pretty much unchanged:-
What Is an Eosinophil-Associated Disease? Eosinophils are a type of white blood cell and they play an important part of our immune system. Eosinophils help us fight off certain types of infections, such as parasites. They are named because of the characteristic microscopic stain that gives them a reddish color under a microscope. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections (caused by parasites), eosinophil-associated gastrointestinal disorders, leukemia, and other problems.
 However the situation in the UK is very, very different.

EoE is pretty non-controversial still in the UK, since there should be NO eosinophils in the oesophagus. Zero. But the threshold for diagnosis elsewhere in the digestive tract is less well agreed upon. Families have seen their diagnosis removed, replaced, or challenged as these thresholds change. Over the past two years close scrutiny has been given to the surge in EGID diagnoses and almost routine treatment of symptoms. A "rare" disease has become almost commonplace in some areas which has alarmed many professionals. Suddenly, it's the diagnosis no one wants to give, no one wants to support yet *everyone* has an opinion on.

Whilst we as a family have had direct experience of less than ideal care at times, by and large the focus has been on supporting the very real symptoms our children have. That is no longer the case. As Rachel explains well in her Blog post here many families previously supported to whatever extent at GOSH are no longer welcome, and neither is the diagnosis of EGID. Families have had no information, the rumour mill is rife and many have had treatment regimes cancelled, support withdrawn and children discharged with no explanation. Indeed, I for one would be interested to know the view of Nutricia on this change in direction on EGID. Nutricia sponsor NEAW in the USA and work with Apfed. Some GOSH Gastro consultants are also linked with Nutricia. How does the company reconcile these two opposing views of EGID?

So many questions unanswered.

So as a parent of children with non IgE food allergies (and one with a previously confirmed diagnosis of Eosinophilic Enterocolitis) at the coalface dealing with symptoms I couldn't care less what name you give them. But a diagnosis is useful in paediatrics because we have a "Name It or Fix It" requirement, where you have to keep testing to diagnose if the symptoms do not go. This in itself causes all sorts of problems, not least the ultimate flowchart dead-end where no diagnosis and no cure leads to one end point only - suspicion and possible referral to Social Services.

And this is what makes me so mad.

Doctors disagree all the time. But they have a professional responsibility to discuss and evaluate, to involve families and above all, to focus on the patient. The inability to name or cure should not automatically lead to suspicion, and referral to Safeguarding should never be used as a stick with which to beat parents when professionals disagree - yet this is precisely what is happening to far too many people in the UK right now.

EGID is therefore currently one of the most controversial paediatric diagnoses the UK. That controversy is having a huge impact on families who never cared about a name, never sought any particular intervention except perhaps that their child might feel better. The irony is that the people suffering as a result of these national changes in thinking are the patients. The children.

It's hardly progress - and this is probably one of the most depressing NEAWs ever. After all, as a friend said - Awareness requires acknowledgement that something exists.

The existence of EGID in the UK is no longer certain.

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