Sunday, 15 April 2018

A Post Fact Era

- or how Great Ormond Street Hospital for Children managed to avoid the factual information of their damning Investigative Review in 2015 from going public whilst parents took the blame.

So today, you have probably read The Guardian article on over diagnosis and over treatment of EGID at Great Ormond Street Hospital over the past seven years. Having been in the middle of this for all of those seven years, I can assure you there is MUCH more to the story. There is more info here, sadly the Syrian situation meant the Guardian article was cut down. It's STILL not the whole story though. 

Warning: This is super long. The events at Great Ormond Street over the past few years have left many of my friends and I reeling, collateral damage as the Gastro department attempted to extricate themselves from a hugely damning - and damaging, had it been made public - investigation by the Royal College of Paediatrics and Child Health. What followed their investigation in 2015 should make you angry. Very angry. This hospital persistently campaigns for charitable funding over and above any other hospital in the UK. Many departments are centres of excellence, but not Gastro. The RCPCH identified considerable failings, but in an attempt to restore order the proverbial baby went out with the bath water. Good doctors were scapegoated along with parents and the biggest losers of all were the patients. 

Children.

Our Story
We first went to GOSH at the end of July 2010. With a very strong family history of reflux and associated gastro issues, also seemingly non-associated non-gastro issues, we were desperate for answers.  As per our story here http://thereciperesource.blogspot.co.uk/2014/02/why-i-set-up-recipe-resource-long.html we were making progress on the reflux but struggling with motility issues, distension and a host of other issues.

We initially saw our new consultant privately, following an NHS referral from our local hospital being moved to another Consultant. (Our local paediatrician was keen for us to see this particular doctor because she had several patients under him and felt he was most expert on allergic gut conditions and would aim for the most normal approach possible, unlike some consultants at GOSH who were renown for pulling all food and imposing formula only diets when EGID or similar was suspected.)

Our consultant was quite thorough but very quickly fitted both twins into the allergic gut camp during our discussion. 

The photo below of our son’s hugely distended abdomen concerned him considerably. He later said he was concerned this was symptomatic of Pseudo Obstruction but in actual fact it was more connected with the 12 sachets a day of Movicol he had been prescribed locally for some time - something I had been concerned about. Movicol is the same plastic that is in disposable nappies. All parents have no doubt seen what happens when a toddler in a nappy sits in water.... it's a great drug for those with hard stool, but if your gut can't move loose stool, it certainly isn't going to do a great job of moving large volumes of loose stool...



We were prescribed medication - cetirizine daily, sodium chromoglycate and maintained our high dose of PPI medication (acid production suppressant) and were booked for review. Unfortunately our son’s motility issues were no better so he was booked for a gastroscopy and colonoscopy. This was no knee jerk reaction. Our son was going 2-3 weeks without passing stool then blocking the toilet, and was in huge discomfort. We were told that significant eosinophils per hpf were found throughout his bowel, in addition to lymphoid hyperplasia and he was diagnosed with Eosinophilic Enterocolitis. 

There was discussion as to whether Lymphoid Hyperplasia is EGID “waxing” or “waning”, and I actually asked how he knew eosinophils were intrinsically bad - or whether they in fact be part of the repair process? I know of many families for whom LH became the sole reason for diagnosis, and later many more who were diagnosed on symptoms alone. I suspect the desire to reduce invasive testing was the paramount concern for our consultant, but however well intentioned this meant some were perhaps labelled without supporting evidence. This should however be weighed against the merits of trialling treatments to produce resolution as quickly and easily as possible though with minimal discomfort and maximum gain for the patient. For this reason we never queried his assertion that our daughter was also an EGID patient.

Over the next few years our children never really became symptom free, although treatment DID mean they were better managed, growing properly and thriving.  

This should not be understated. Gt Ormond Street is not a local hospital. It's usually a place of last resort, where children with chronic or seriously acute problems go when no one else can help. Families are often desperate - like us - and grateful for help. It's also a place of novel and slightly unusual treatments, doctors are at the cutting edge of paediatric medicine and are always trying to push boundaries to help children. We embraced the plan - and the early results it brought.

We were also told their hypermobility issues often went hand in hand with EGID, and certainly as a family we fitted the picture he was describing. (Indeed, my father, who has suffered severe reflux all his life and almost died of aspiration pneumania when younger had an endoscopy locally a few years back. He too was over threshold for an EoE diagnosis. )



Appalling Errors from GOSH
We did have concerns about the slapdash way GOSH in general dealt with clinic letters, appointments, records and medication. Their inability to lease with local teams was shocking. Over time we have had to deal with the following errors:-
  1. Our consultant himself suggested Jej (small bowel) feeds for our son after yet another poor set of impedance study results, forgetting he ate (ie used his stomach).
  2. Our son was overprescribed Gabapentin by a factor of 5 which I picked up, after collecting £1000 worth of the drug from the pharmacy…
  3. Our son was also overprescribed steroids by a factor of 10 (this one the pharmacy picked up)
  4. Secretaries repeatedly wrote “Azathioprine” (cancer drug) instead of “Azithromycin” on the twins’ clinic letters
  5. All GOSH letters were typed in India during this time and incredibly, a year’s worth of Rheumatology letters went to Ipswich Hospital, Australia 
  6. The secretary sent me results and admission plans plus sensitive data by email for another child, when I pointed this out she replied by email “HELL! Sorry!” .
  7. Someone merged our older son’s record with another boy of the same name born a day later, apparently also in in our town, we had admission letters for urology, neurology etc
  8. Admin did not transfer all private notes to the NHS file leaving gaps, especially in our daughter’s notes. 
  9. Our consultant “diagnosed” our daughter with eosinophilic disease despite never having cytological evidence. He also had the twins’ older brother on a similar regime despite 2 out of 3 kids not having evidence for diagnosis of EGID. She was prescribed swallowed steroids (Flixotide swallowed not inhaled) for EoE that she didn’t have according to gastroscopy results, because he thought it was worth a try. (Perhaps it was?)
  10. At least twice I had to call our consultant from the ward of our local hospital when our children were admitted locally, because there was no treatment plan shared from GOSH. I was expected to be the "go between" and pass on messages. 
  11. Similarly clinic letters never arrived at local clinics before our next appointment - so I had to verbally relay plans from our GOSH consultant. All highly inappropriate.
  12. Our consultant enrolled the twins on the Cincinnati “Twins EoE Research Project” despite neither having EoE and only one having a clear EGID diagnosis.
Eventually you just “expect” errors, you expect clinic letters to take months on end to arrive, to have to explain appointments to local teams because there is never any communication or feedback - but it never, ever felt right. Someone else pointed out our consultant “never looked back” to check anything. What he didn’t remember, he assumed, and if you were not on the ball you wouldn’t pick it up. 

In fact I and others were invited to be part of a Gastro Parent Network to improve relations between patients and clinicians, in an attempt to manage some of these appalling errors. It was also a requirement of a massive private donation which founded the APG - Academy of Paediatric Gastroenterology. This Network wasn't popular though, and was quickly shut down.



Many times I’ve wondered what would have happened if I had not picked up the above errors - or didn’t understand things better. Would I now have a child with a stoma, unable to poo out of his bottom and dependent on a bag? Unable to eat? It’s enough we have mega rectum, mega colon and a colon 30cm longer than it should be due to years of over prescription of Movicol. We escaped far worse.

Our second son was referred there for testing after years of serious impaction. Once puberty hit his previously mild constipation became uncontrollable and he was referred to GOSH. Immediately after scoping him our consultant gave me photos and said he was “more of the same” ie like our other children. He prescribed the same medication regime, but oddly this did not change after our son’s histology reports came back. Previously unmedicated and on an unrestricted diet his results were as near as your can get to an objective scope. However his eos levels were “unusually low”. Yet still he remained on the same medication regime for EGID. The gluten free diet DID however make a massive difference, and we reduced his laxative intake successfully.

Many times we were redirected to private care to get quicker results, or access testing unavailable on the NHS. This would be all very well and good - but there never seemed to be an informed change in care following such tests, which later made us decline. Once we were even invited - encouraged even - to travel to Belgium for oesophageal manometry for our daughter, because it was “so easy”. Using private healthcare is all very well but the notes were rarely copied across to the NHS. Having successfully become NHS patients we felt strongly we were DONE with the miscommunication and haphazard treatment and wanted to stay that way if possible. Obviously this should not be the case, administration should be able to cope with a mesh of private and state healthcare, it reduces waiting lists for others and speeds up results for many. But sadly GOSH admin couldn’t even cope with straightforward NHS communication.

Our consultant explained there was a strong link between EGID and EDS3, now called hEDS, which we hadn’t really heard of. Our older son was also under GOSH Rheumatology though and they suspected similar, and our eldest - and myself - later received an EDS diagnosis independently from local adult services so this did not seem surprising in retrospect. What WAS perhaps odd was that our consultant wrote it as a diagnosis on the twin’s clinic letters and when we participated in his research projects. We pointed out they did not have a formal diagnosis but this remained. This caused huge problems locally. GOSH Gastro tend to “own” their patients, unlike other tertiary hospitals/departments. Communication with local hospitals is at best poor, at worst dangerously absent. (Doesn’t help if your clinic letters are in Australia either…)

So although not ideal, our children remained patients at GOSH Gastro because they were the only ones willing and able to help them. 


We escaped many of the unpleasant side effects of treatment others I know endured because we were very wary of additional treatments if they caused unnecessary side effects. Steroids made reflux a million times worse, never mind the behaviour issues, so the blood sugar regulation issues many experienced we only had mildly. (Steroids kill ALL eosinophils, which are “exquisitely sensitive” to them according to our consultant. But they are also involved in the insulin recognition pathway.) Likewise tube feeding impacts on insulin production because continual or more constant feeding is not normal for the body and it adapts. If that is withdrawn then blood sugar dips. How many children do I know who cannot now stop tube feeds for this reason? If I had not picked up on the Gabapentin overdose, which our pharmacy did not spot either, my youngest son could have been left with permanent kidney damage. I knew I needed to be vigilant.


2015 GOSH Gastro Review 1
In 2015, unbeknown to us a comprehensive review of the Gastro department at GOSH - and specifically those handling EGID patients - was undertaken. 

Separately, the Royal College reviewers wrote an urgent, confidential letter to GOSH’s medical director warning that the service “may be causing avoidable harm to children” - a claim which GOSH has subsequently denied. The College had been told that the gastroenterology team was diagnosing some conditions, including the rare allergic disease EGID, “excessively, without…consistent criteria or thresholds”, the letter added.

Initially a study of 40 complex cases was requested but the Royal College. They didn’t get past 10 - so concerned were they that a full investigation was launched. They found over-prescription, over intervention, poor substantiation of treatment plans, over diagnosis on little or no evidence and poor outcomes for children. 

NONE OF THIS HAS BEEN OFFICIALLY SHARED WITH FAMILIES. 

The head of Department, who also was responsible for the EGID cohort left GOSH and went to Dubai, perhaps to avoid further scrutiny or to avoid the fallout that ensued. This left our consultant in charge - and also carrying the can for the investigation’s findings. This has seemed to many families to be rather harsh. His patients had collectively had the most “normal” of lives under treatment, avoided harsh interventions and done best. This has been forgotten in the ongoing investigation by the RCPCH.

Consultants at GOSH have long used EGID patients for their own idiosyncratic research. 
One is renown for over-use of TPN, and another for similar and for removing all food at the drop of a hat. Our consultant at least favoured normality and medication over extreme restriction, for that we were grateful.  I have made friends with other families over the years, and have truly heard some horror stories. When I contacted the Royal College who undertook the review with our experiences, they said they were actually very familiar and in line with many others. They urged us to complain. Complaining however, involves sticking your head above the parapet, and there are always consequences… 

Worse still though, this investigation has not only NOT been shared with families, but the comprehensive review of all patients that followed has been conducted without clarity and with considerable subterfuge. 

Following the investigation it was decided that EGID no longer existed in its previous form. 

But there remained the problem of what to do 
with all their EGID patients. 


Accusations of FII
These were subdivided into three groups and shared between three Consultant Paediatric Gastroenterologists to evaluate. These three assessed all cases, having been previously advised by Dr Danya Glaser, psychiatrist and specialist in FII - formally known as Munchausen’s Syndrome.  http://www.expertsearch.co.uk/cgi-bin/find_expert?2184 

Dr Glaser has an “interesting” previous career. Obsessed with FII her recent publications on it are now used nationally. Even the Royal College of Nursing has had them on their website for guidance. However her “catch all” description of possible candidates for scrutiny includes almost every parent I know. If you’ve ever blogged, fundraised, challenged a health professional, searched for health information on Google, been identified on the Autism Spectrum, had ANY mental health issues in your life, had a difficult birth… the list is endless…. you are to be under suspicion. 

Shockingly Glaser has in the past even defended Dr Southall - struck off for experimenting on children then accusing parents of deliberate FII  http://www.standard.co.uk/news/the-doctor-who-destroyed-families-southall-struck-off-for-accusing-parents-of-killing-their-children-6692927.html - to the GMC saying 

“Professor Southall has made a very significant contribution to the welfare of children who have been subjected to maltreatment.  His commitment to children and their wellbeing has been exemplary and remarkable.  A strong leadership of the nature which Professor Southall has provided in this field has been an invaluable attribute.”

In an exercise which can only be assumed is to avoid taking the blame, the Gastro Department have used Glaser - who chaired ALL multi disciplinary meetings in the department -to shift the blame from the over-enthusiastic, cavalier doctors to families. Many parents have been accused of FII, including us, and some have even faced having their children removed. 

NONE of these families have even been told that GOSH Gastro has been under such scrutiny- the pathetic letter to families tells you nothing. GOSH were told to admit more children for long observation periods to assess symptoms and decide if treatment - and indeed diagnosis - were genuine. But the manner in which this is carried out is appalling. Children were brought in to a tertiary care ward where people waited up to 9 months for a bed, where MRSA was rife and only one toilet is available for the whole ward….. and were given a carrier bag of snacks to try during their time there. Many of the children are too scared to try. Some know they have reacted to foods, some associate food with discomfort and pain, and others have been in appointments listening to consultants telling their parents they have food allergies and must avoid certain foods. ALL will have had debilitating gastro symptoms and are nervous of new foods. It’s a no-win situation. If they don’t eat you are a controlling FII parent - or if they do and don’t react, or react yet it is not accepted any longer as a true reaction. (All due to changes in hospital categorisation, not parent reporting.) And God forbid your child reacts whilst no one is available to observe - ie much of the time - because it’s then definitely false! 

This is all EGID families at GOSH were offered. That or being threatened via letter with reporting to Social Services for FII if they didn’t stop all medicine and reintroduce all food.  A friend received a letter stating this and was threatened at their appointment. We were already reported and “invited” for a two week admission. Three otherwise well children taking up 3 out of 10 beds on a tertiary care ward with the above “bag of food” plan. We declined - or rather the kids, one aged 15 - point blank refused. The *anxiety* it created was criminal, none had ever spent more than the odd night in hospital. It’s left scars to this day. 

No one was been given any information beyond this letter all families received (which offers no information whatsoever) and the marginally more useful information on the Trust website. http://www.gosh.nhs.uk/news/latest-press-releases/2016-press-release-archive/review-gastroenterology-services-great-ormond-street-hospital. 

Three consultants were asked to review these concerning EGID cases - "perplexing presentations". PALS refused to get involved and did not respond to parents, and Glaser seriously believed innocent doctors had been hoodwinked time and time again.  http://news.bbc.co.uk/1/hi/health/7303038.stm
"We have become impaled, hooked on a few cases which have been used by the media to cast doubt on the extent of child abuse. We need to start thinking the unthinkable."
Yet how a psychiatrist can be leading the Gt Ormond St Gastro Department is quite beyond me. She is not a clinical Doctor, not a paediatrician and she is NOT a paediatric gastroenterologist. Yet somehow, she was suddenly the ONLY authority on whether parents were telling the truth - or whether children’s symptom reporting was genuine. And don’t kid yourself that admission means observation, these are busy wards with very sick children - there is little, or no observation. Just judgement.

Since then the department has been moved away from the infamous Rainforest Ward in the Southwood Building. Most EGID patients have been jetisoned, and research canned. We were completely vindicated, but the kids lost 18 months of care, and of course nothing has changed - because it wasn’t ever made up! The whole process has been incredibly stressful, and until now it has been difficult to say anything. GOSH have largely escaped any penalty and parents have had to put up and shut up.

Social Service Referrals
Obviously, referrals for FII should never have been the way a tertiary level hospital seeks to get out of trouble, blaming parents and avoiding addressing important issues is not only a coward’s way out but it completely runs contrary to their raison d’etre. 

Yet it’s a symptom of a bigger problem. 

Currently in the UK, 1 in 9 children under 5 are referred to Social Services. Of those, 1 in 5 are referred for suspected Child Abuse. Parents are suspected as a matter of course, it’s the default option. No easy answer? Suspect the parents. But is this REALLY the “Big Brother’ Culture we want to live in? Are we going to let parents take the blame for cavalier doctors, and professionals covering their backsides? Do we seriously believe that nearly 10% of the children in our country are being neglected, abused or maltreated? One child is removed every TWENTY MINUTES in the UK. 365 days a year. How on EARTH have we come to this? That’s an awful lot of “hoodwinked” doctors, and social workers following Glaser’s flow charts.

This doesn’t make comfortable reading. The UK reality is not in line with other European Countries, and I’m not sure it’s indicative of a society I want to be part of either. I’m guessing you are thinking (if you’ve read this far!) that no false accusations would ever get far. But a S47 or FII enquiry is done without the parents’ knowledge. You never get the chance to hear the accusations and refute them. They can be completely wide of the mark - you only have to look at the errors made in our care, and I have friends whose children’s notes have been tampered with to avoid doctors taking the blame. And what few people realise is that in the Family Courts parents have fewer rights than accused murderers in the Criminal Courts. You are guilty until proven innocent. Parents cannot speak, are not informed and have no means to appropriately defend themselves. Social Services are utterly unaccountable, with “professionals” like Glaser endorsing their every move.

The bizarre thing is, GOSH consultants are supposed to be professionals at the top of their game. Doctors who have reached the pinnacle of their career - or not far off. Yet we are apparently supposed to believe that these experienced professionals have been duped by a large number of unconnected parents from across the country in some bizarre mass FII conspiracy! 

It’s utterly ludicrous! 

As President Lincoln said:-

 “You can fool some of the people some of the time, but
not all of the people all of the time.”

This “Post Truth Era” is a frightening place indeed. Desperate to make sense of an ever expanding, complex world in a global, technology based interconnected world, we have sought to explain our life experiences via statistics, predictions and trends. But as William Davies explained here in The Guardian https://www.theguardian.com/politics/2017/jan/19/crisis-of-statistics-big-data-democracy this ceases to be meaningful the larger the data sample. Individuals get lost in the process and descriptors apply to a relatively smaller and smaller average group. Trying to identify child abusers in this manner is an utterly meaningless, futile activity. 

Dr. Lauren Devine explains eloquently in her research here http://eprints.uwe.ac.uk/29438/1/NewRethinking%20Child%20Protection%20Strategy%20-%20progress%20and%20next%20steps%20-%20Seen%20and%20Heard%20-%20Dr%20Lauren%20Devine.pdf that the self-fulfilling Theory of Child Protection is no more reliable than rolling a die in identifying children at risk, or those likely to abuse, with over-predicted risk running at 97%. The impact on families falsely accused is enormous. Family Law holds parents guilty until proven innocent, unable to have a voice and condemned by a system weighted heavily in favour against them. Add that to the mismatch with a society which believes only the guilty are scrutinised and you have a perfect storm.

The Future for Gastro at GOSH
July 2017 saw a Follow-Up Review by the RCPCH. Whilst some things had definitely been tackled by the department, unfortunately there seems to be an embedded culture of superiority and disinterest in working with others amongst the consultants. You can obtain a copy of the Review yourself, if you have a relationship with the Department, The number to call is 020 7762 6041.

What I particularly take issue with in the Follow-Up Review is the claim there has been no long-term damage to patients or families from the Departmental Failings prior to Special Measures in 2015, nor as part of the process to rectify the concerning problems uncovered by the RCPCH. In reality though, there has been no demonstrable benefit to children or families from this process. There has been no fulfilment of their Duty of Candour - no sharing of the results of the original investigation by the Royal College of Paediatricians. The losers in this entire process are the children and families.

  • Children who have had years of exclusion diets with minimal supervision (we had no NHS dietician for years, despite a tube fed child on elemental feed!).
  • Children with feeding tubes and repeat interventions. (Our daughter is now terrified of hospital interventions).
  • Accusations of exaggeration levelled against families when there was insufficient evidence for diagnoses given. (*surely* the responsibility of doctors?!)
  • GOSH Gastro refused to work with local teams so there was no local care to return to.
  • Children "cut loose" from the system, often denied access to NHS care - for example following our experience we had to wait 10 months for care to restart at our local hospital, one son waited two years for a Rheumatology referral requested by GOSH on discharge, he's still waiting for testing and treatment. We now have to privately pay for his orthotics as we don't live in the community catchment of our new local and cannot access NHS orthotics.
  • Diagnoses removed which explained complete symptoms which then all need retesting for and reconfirming.
  • Permanent evidence of Social Service intervention taints future treatment. This impacts on emergency care AND care for chronic illness. It colours all future involvement with health professionals.

I would challenge anyone from the RCPCH to claim our family has not been permanently affected, both by failings at GOSH and by their plan to put things right. GOSH gastroenterologists gave parents the impression they had defined an emergent disease and took ownership of their symptoms and care. They owe it to the children they profess to care for to provide appropriate ongoing care. After all, they would like us ALL to think their level of care is as their motto says-

The Child First and Always

Sadly that only applies if the hospital’s proverbial a*se is covered, and it suits the department's cavalier consultants. Otherwise you are cut loose with a local referral to Social Services. 

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