Thursday, 27 September 2018

Truth or Dare? Why fake news might be the end product of democratic society.

Now available on "Musings", my article in full on "Fake News" from Open Thoughts.

As I scroll through my Twitter feed, I truly despair. In a week when Jeremy Corbyn has apparently won the Nobel Peace Prize it would seem soundbite-friendly fake news has finally triumphed over informed and verifiable information. We are hurtling towards a Brexit it seems none of us really wants, a manipulated result of "fake news" generated and sustained by bots filling echo chambers we cannot escape from. If this isn't some dystopian parody of "Brave New World" I don't know what is. We have a President of the Free World who self selects his truths and our media is fighting for its right to free speech. It's a long way from our imagined past, and I am reminded of a favourite history quote- 
"Fact is sacred, opinion is free."    C.P. Scott
Yet this assumes a fact is an objective thing, verifiable and incontrovertible. This is in fact rarely the case. As E.H.Carr eloquently explains in "What is History?" certain raw data such as dates of famous battles are difficult to dispute, but the vast majority of "factual" data with which historians grapple  is less certain. Some need justification, as Pirandello wrote, 
"A fact is like a sack, it won't stand up until you put something in it."
Facts are also subject to observation, interpretation and not least, manipulation and they are no more reliable than statistics. Facts rarely speak for themselves and are open to selection and arrangement to suit the purposes of historian, writer and commentator. 

The nineteenth century was perhaps the great age of "facts", with historians attempting to chronicle the events of the past in total denial that by selecting events and themes, imposing their own education and philosophy on their work and neglecting vast areas of the past they were in fact being entirely subjective. Men like Macaulay and Trevelyan made sweeping generalisations to facilitate their seemingly impossible task of chronicling History to portray the bigger picture. As an historian myself I abhorred the obvious neglect of the less important individual, of social and economic trends and the use of the past to justify the present but undoubtedly without their brave attempts to achieve so much we would have been deprived of the fascinating stories which contributed so much to the understanding and appreciation of our shared past. Inadvertently perhaps, these men were using past "facts" for a political purpose - the justification of British world supremacy and the growth of our Empire. Nothing new, this was the use of facts for a purpose, for propaganda.

Photo by Jingda Chen on Unsplash
For many though propaganda is a dirty word, which smacks of war-time desperation and government control. Used for the public good in times of dire need it was accepted as a necessary tool. But in the twentieth century it gained a new, more respectable name - Public Relations. "PR" as it became known, was both a product of the growth in democracy, and a direct result of the need to control it. 

At the dawn of the twentieth century the developed world had an emergent consumer society, with money in their pockets and opinions on everything. Then followed the First World War 1914-1918 which had a far reaching impact on the ordinary man - and woman in the street. This growing social and political involvement alarmed many, but one man saw an opportunity. Edward Bernays, nephew of Sigmund Freud lived in New York. Now known as the father of PR and master of propaganda he initially harnessed the power of persuasion in business. Then he went further and in his book  "Propaganda" (1928) he incorporated the literature from social science and psychological manipulation into an examination of the techniques of public communication, using the ideas of his uncle Freud.
"The conscious and intelligent manipulation of the organized habits and opinions of the masses is an important element in democratic society."       Edward Bernays
Far from seeing propaganda as a unique tool for social persuasion - crowd control - during times of national crisis, Bernays believed you could (and should) manipulate society to precipitate cohesion, avoid anti-social behaviour and direct individuals in desired behaviours. In business this was marketing, using basic factual information (initially) to drive demand. This worked extremely well in the car industry in early 20th Century America, but marketing products to an emerging consumer society was not always so straitforward. Selling cigarettes to women is famously one of Bernay's biggest PR successes, and represented a crucial diversion from fact to persuasion with little basis in truth. Cigarettes were branded as feminist "Torches of Freedom", neatly falling inline with  the campaign for female emancipation the wake of the First World War and uniting the themes of democracy and PR.


But Bernays went much further, and his work for the United Fruit Company connected with the CIA orchestrated the overthrow of the democratically elected Guatemalan government in 1954. Bernays early manipulation of politics paved the way for modern electoral campaigning, arguably culminating in recent years with the election of Donald Trump in America, and the result of the Brexit vote here in the UK. (Boris's Brexit bus was straight out of the Bernays' school of PR.) Just as  Bernays believed that public opinion should be directed and controlled, modern political parties fundamentally campaign along the same lines. Information is sourced, selected and manipulated and "facts" are as rare as hen's teeth. However, although "Fake News" is not new, the supremacy of social media has certainly made it more blatant. The exaggerations, misinformation and sheer untruths clicked and shared today work faster than Bernays could ever dream of, "free speech" permits free lies, truth comes at a cost. Obtaining "truth" today, costs time, education and resilience.

What the present political climate makes abundantly clear however is that we are still a society of individuals, with overlapping, similar yet fundamentally different needs, desires and aspirations. Obtaining political consensus today is far more of a challenge than it ever was in the past and is illustrated well by the Trump/Clinton Presidential campaign in America. Two candidates attempting to bring millions of people together in support of extremely vague political aims, people from such different states as California and the Carolinas, Kentucky and New York. The bigger picture is at the heart of American politics, a truth appreciated by the Trump campaign in an ironic denial of the needs of the very voters they relied on to make the White House. 

Uniting ever larger groups of voters with access to partial information via social media is a futuristic challenge of gargantuan proportions. Making sense of millions of voices with their valid, "free" opinions requires some level of distillation and control. Bernay's techniques might controversially be the only way of political progress in a democracy, and who dares most wins. But victory doesn't come without a cost. Like Trump, Brexit is the end product of mass democracy and how government and society attempt to define and control mass involvement in politics. It is a clear warning of how focussing on the desired bigger picture can disenfranchise swathes of individuals in the process. We should heed this warning, otherwise democracy will be a victim of its own success.


Tuesday, 21 August 2018

Writer for Open Thoughts

I've just joined the team at Open Thoughts, and my first post is now live over there! Do go over and visit, Open Thoughts is a new venture offering a new narrative on today's problems with contributions from new up and coming thinkers - and some older ones, like me!



Truth or Dare? 

Why fake news might be the end product of democratic society.

Friday, 11 May 2018

And so it begins...

So next Monday is D Day for son #2. Or rather, GCSE day. The first day of his GCSE exams which continue for the next calendar month. But not so very long ago, I didn't believe we would get to this point. That this would not be his future, and we needed to consider "alternative options" as advised by so many professionals. But our son is testament to the fact that you can never - and should never let a diagnosis, multiple diagnoses, a previous reality and complex difficulties define you. As a mother, I have learned more from my second son than my other three children combined. I've learned patience (!), resilience, that a glass of wine on Friday night can solve a multitude of problems... but most of all I've learned to believe in my kids. I have faith; faith that you can only do so much, and that actually - it really will be OK.



To give you an idea of the significance of Monday, here is a reminder of where we've come from...

Never one to subscribe to a predicted trajectory, our ever-so-unique, exquisitely frustrating and unbelievably resilient young man has outdone every single prediction of progress. And some. I only hope his primary school teachers get to read this.

H was non-verbal until school age, he was asked to leave his private nursery, "expelled" from Tumble Tots (quite an achievement I'm told!!) and a total, complete and utter full-time liability. Blessed with a determination which does him credit, he started Reception at a new school and spent the first term under a table throwing books at the teacher's legs. But his meltdowns were extreme and so the Head tried a pop-up tent in her office for him to calm down in, since he absolutely couldn't cope with the sensory overload in the classroom. The tent didn't work, and he kicked her shins twice so a space behind a couple of bookcases was made where he could be 'safely" barricaded in.

His coats were always fluorescent yellow or orange - easy to spot on the large school field so lunchtime supervisors could keep track of him. Or he could be spotted as he "did a runner" and headed for the road. He could find his jumper in the "jumper box" by smell alone (out of 30+) and would put his lunch in his hair rather than eat it. He started mark making but would not comply with any school work, and appeared to learn nothing but a few words.

Year 1 wasn't much better, with 46 fixed term exclusions before he turned six. Desperate, and knowing there was a bright child locked inside this whirling dervish I appealed for help. However I was told we would "never get a Statement", because he was too bright, and too young. My response was much like my son's...

"Just watch me."

I used every trick in the book, researched and wrote letters and never gave up. Sure enough, he got his Statement, and not only just a Statement but a full time, 30+ hour one. Things were looking up. But shortly after his school reality went from bad to worse as he just couldn't cope with the requirements in school and he was placed on a part-time timetable. At this time we were told he was a risk to himself and others, that a risk assessment had been carried out and an "escape plan" drafted to "rescue" the other children when he kicked off.

I think part of me died that day.


But you carry on, find your proverbial Wonder Woman pants and get on with it, don't you?



So we had an emergency meeting with the Council SEN Officer, who explained to the Headteacher that she had to exclude him permanently so alternative provision could be found. But the Headteacher in question broke down in tears and said she had never permanently excluded any pupil and couldn't do it now.

How selfish - or so I thought. But I must confess my view has altered in recent years, and I've amended my interpretation of this conversation. Miss D - if you are reading this, thank you. Thank you for being as bloody stubborn as H and I and for refusing to give in. Thank you for giving him the chance he needed.

Soon after we decided to move, to a town with a large primary school used to dealing with complex needs, where H wouldn't stick out like a sore thumb, and would have the chance of mainstream provision. It was a rocky start, but with the most wonderful Teaching Assistant he thrived. Mrs C, if you are reading this, I cannot put into works the gratitude I have for you, for not only believing in H, but for supporting him, understanding him, fighting his corner and just being amazing.  I hope you know the young man H has become. I am so glad I refused the advice to look for a Special School from 11 and that you supported me in this; he has flourished in the mainstream State system.

Going up to High School, H had a poor set of SATS results but had started to engage. He was reading prolifically - voraciously even, and had turned a corner. No homework was done for the next 4 years - and precious little over the past year either, but he had a reading age of 20+ when aged 12, an impressive general knowledge and a vocabulary that outdid his older brother. Not bad for a previously non-verbal child!

In fact, he hasn't looked back. but that doesn't mean to say it's been plain sailing. Still volatile and emotionally all over the place he's a daily challenge. And he's done absolutely NO revision. not a jot. No homework since Christmas and he's so "bored" of GCSEs that most days he's late, and sometimes just plain refuses to go in. He might not even make all his exams, but do you know what?

He has nothing to prove.

He's read the reading list for A Level Ancient History already. He has a phenomenal grasp of Philosophy, advanced Chemistry, computing and Linux systems, Politics, Engineering, Literature... the list is endless and his biggest problem is narrowing down subjects for A level study. He enjoys dystopian novels, discussing current affairs and gives me the run around in every discussion we have. He cannot read a note of music but has taught himself to play all the Etudes and Metamorphosis series by Phillip Glass.

And I mean *really* play. 


Click photo for link

He's set up a company with two friends to launch amateur satellites into lower space and is working for his HAM radio license. He wants to learn the guitar - and he will. He sees absolutely no limits, no boundaries, and no horizon to the endless possibilities of life. It is the most wonderful gift that he has an innate assumption that everything is possible, available and a real option for him.

Which is why my heart breaks when I see him crippled with anxiety, consumed with depression and overwrought from sleepless nights, worry about expectations and judgement from others. Because he has accomplished more than most sixteen year olds will ever do.

So what will be will be. He might make all his exams, or some, or none. He might overcome the anxiety, fight the fear and recover his happy-go-lucky attitude in time, and prove to the world and those who've judged him that he is so very capable, gifted and talented.

Or he might not. But he has nothing whatsoever to prove - at least not to me. I am so incredibly proud of him and every little thing he has achieved. He's far from perfect, and picking up his laundry might be a bonus, but not in my wildest dreams did I think we would be here ten years ago. Or even five. And that stomach jerking anxiety I will experience on Monday morning as I drive him to his first exam will be savoured - because it's an achievement in itself. And I will probably cry.

Saturday, 21 April 2018

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.

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 long 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 no stay 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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