Great Ormond Street : The Child First and Always?

Last night we waited for the ITV programme on Great Ormond Street with trepidation. So many families I know feel violated all over again by the articles over on The Bureau of Investigative Journalism which although ground breaking in many respects fall short of holding the Gastro department at GOSH to account.  They - and we - have had to endure years of poor care/no care/false accusations whilst being kept in the dark about what was really happening at the hospital. For some it's cathartic that some of the truth is coming out at last, but for many it's opening old wounds.

Our thoughts?
It was a good start. We thought the documentary was quite clear the disease exists, but is rare. It covered the accusations of over diagnosis and over treatment simplistically but fell short of making it clear how desperate many families are for help by the time they get to GOSH. More concerning was that it also came across on the programme that it was clear cut this had occurred and that this was founded on an agreed definition of Eosinophilic Gastrointestinal Disease - EGID.

Anyone who has any experience of EGID will tell you there is no such thing.

There is no agreed diagnostic criteria for EGID beyond EoE (Eosinophilic Oesophagitis but the acronym uses the American spelling of Esophagitis) which has been recognised for years. EoE is far simpler to diagnose therefore, and there is a broadly agreed consensus on diagnosis and treatment. There should not be any eosinophils in the oesophagus - which makes it fairly straitforward to diagnose EoE if you find some!

Indeed, as I understand it Addenbrookes Consultant Dr Rob Heuschkel has in fact had patients he himself has diagnosed with EGID and treated similarly to GOSH. I've heard some families who have then been seen at the Royal London Hospital who took away medications and feeding tubes. I've also heard the reverse - The Royal London's treatment plans removed by Addenbrookes. This was not mentioned, the documentary should have made it much clearer that it’s controversial area of medicine.

EGID is an "emergent disease". Poorly defined, inadequately understood with senior consultants seeking to make a name for themselves rectifying this. The gastrointestinal departments at the  three hospitals mentioned - particularly Addenbrookes and GOSH, are not known for collaborating or even getting along. It's a dog-eat-dog world out there when less than 1% medical research funding goes on gastrointestinal research - and none on paediatric gastro research. Private funding and international collaboration is often the only way to further research programmes into diseases like EGID. This is where research conflicts with patient interest. Families are too often caught in the middle when consultants seek to further their research - and careers - by pursuing ground breaking treatment programmes.

Nothing I've seen or read this week has made clear the referral process to GOSH. 
Your child doesn't get referred to GOSH unless other avenues locally have been fully explored. It's not a natural process as implied by the documentary. You don't attend a few local appointments then get a quick referral. Your child will have waited weeks or months for a local appointment. Then you are seen for months or years locally (unless particularly acute but this is less common in Gastroenterology) before anyone discusses a tertiary referral. Indeed many hospitals dislike referring to GOSH who are known locally as "God's Own Service" because once there, local hospitals lose control over patients they are expected to care for locally. So by the time your child reaches GOSH, you've been through the mill a bit, your child will have had symptoms for months if not years and you are likely to be feeling pretty desperate. It's a place of last resort! The system is further complicated by NHS rules which mean smaller local hospitals, like District Generals, cannot perform surgeries or interventions on any child under 2, and many children under 12. This then means tertiary hospitals like GOSH sometimes see patients earlier than they might normally but it works well in other specialities and children visit GOSH for procedures but then return home.

I've also read little about the genuine good intentions of the consultants at GOSH.
Hand on heart I know our consultant wanted to help our children. That may have got in the way of best practice, but he absolutely cared. But in a department where there were several consultants treating the same symptoms in completely different ways with no working together, no overlap, absolutely no consensus this wasn't enough. Administration was a nightmare and there was zero communication with local teams. It was a recipe for disaster.

For us, the biggest "gap" in the story being told this week is how the hospital sought to scapegoat parents to avoid culpability for the criticism and errors being levelled at them. As Amazing Productions pointed out in last night's documentary GOSH are still hiding information. There HAS been lasting harm to many families from this whole saga. There has NOT been a full and candid apology from the Trust. Families have NOT been kept informed about care for their children and many were not even officially diagnosed, just dropped!

The right to obtain information
We’ve had an open Statutory Access Request for Information (SAR) for a year and and a half now. Parents have a right to see medical notes and emails between professionals, MDT minutes etc. but these are being withheld. We actually learned that until December 2017 there was not even a procedure for answering these requests and the hospital had just sat on them since the impact of the 2015 RCPCH Review started to be felt! They have now appointed someone to deal with all SARs but it will take months - if not years. This is simply not good enough if you have been falsely accused of FII, or your child has no care.

Ironically, the reason given for not supplying information is that it "might cause harm" - which given the scope of this week's exposé on the hospital is quite staggering. Apparently it’s ok to supply drugs that might cause harm, but data you are legally entitled to is withheld for that reason! 

I would encourage parents similarly unable to obtain more than a few photocopies of medical records to report Great Ormond Street to the Information Commissioner for breach of the Data Protection Act. Their website is here. 

I set up The Recipe Resource after years of struggling with debilitating gastrointestinal symptoms. Our story is here. But there are still many families still dealing with similar issues, whatever their diagnosis, and the last thing they need is a backlash which removes all understanding and support. That would be as bad as blaming parents for requesting interventions, and as damaging for the children who are supposed to be the focus for care. Gut food reactions need MORE awareness and MORE understanding.  Otherwise there is no hope of a consistent, helpful approach for parents living the nightmare that is feeding and caring for a child whose gut cannot perform the basic functions it was intended to AS it was intended to. My children and all the other children I know suffering with gut allergies and related diseases deserve better. FAR better.

The Child First and Always.