Time to Give HCPs a Break — Forgive but Don’t Forget.
DECLARATION: I have Type 1 Diabetes, and I am also a healthcare professional in training, so I have a foot in both camps here
Yesterday I attended the fantastic TAD event that was organised by @Parthaskar.
We heard great, and inspirational, stories of lives with diabetes from a range of individuals. Some had been living with their Diabetes for longer than I’ve been around (like @LisWarren and @AnnieCoops), people who have won election in the aftermath of their diagnosis like @jreedmp, people who have achieved the unthinkable like @joeeldridge setting a record for fastest team ride across America in 2007 as part of an all-T1 cycling team.
We also heard stories of lives made more complicated by diabetes, diagnoses missed and delayed, almost everyone who spoke was diagnosed in DKA.
There were powerful accounts from the audience too, of diagnoses missed in primary care. This isn’t good enough. We can and must do better.
However, I thought it’d be important to set some context for all of this. For people with T1D, and definitely for anyone reading this blog, Type 1 Diabetes looms large in our consciousness. It’s a big part of our lives, and it’s difficult to comprehend how it could ever be missed.
Not exactly rare, but not common either
Type 1 Diabetes is not a common disease. Among children the prevalence (the proportion of children living with diabetes) is around 1 in 500. This is similar to Cerebral Palsy, Multiple Sclerosis and a heart disease called Hypertrophic Cardiomyopathy.
The incidence (the number of new cases each year) is 24.5 per 100,000 children. By comparison Down Syndrome has an annual incidence of 1 new case per 1,000 (or 100 per 100,000) babies born — Down Syndrome is about four times as common as Type 1 Diabetes.
As we can see from this figure taken from Lissauer, in the time practicing that it will take the average GP to see their first newly presenting case of Type 1 Diabetes, they will diagnose SEVENTY-TWO cases of Asthma. This was also a point raised at TAD yesterday by @PaediatricReg
These numbers are huge, but I’m not arguing that they alone excuse missing it (nor indeed am I arguing that at all — rather that it can be understandable that primary care might miss it).
As PWD, we all know the 4 T’s. For us, they are synonymous with Type 1 Diabetes. We’ve all that THE THIRST, we all know that if called upon we could pee at a professional-level. We’ve all see the weight drop off. But not everyone presents exactly like this, many people at presentation have a couple of the T’s, not the full house. And while, for us, these are all specific symptoms — in the medical world they’re not much different to the ‘flu-like symptoms’ that hundreds of diseases present with.
Children who are tired, and thirsty, and vomiting might have meningitis, appendicitis, a run-of-the-mill vomiting bug. And that’s what most of them turn out to have. There are a whole heap of things, serious and not, that present with very similar symptoms to Type 1 Diabetes — almost all of them more common.
OF COURSE Type 1 needs to be part of the differential diagnosis of these cases, but I can totally see how it slips down the list in people’s minds. When you start out, every child you see gets a urine dip to see if there is glucose in it. Mostly there isn’t, there’s a few where this is, but none of them turn out to have diabetes. Over time, this constant negative feedback to doing the urine dip starts to build a cognitive pattern — it’s probably not diabetes because it never has been before.
This is a form of confirmation bias — the more often you get a certain outcome, the more you come to expect that outcome on all occasions.
Does the ‘System’ Care about this?
Yes. This isn’t something that’s happening to people, and no one out there is listening or caring. There have been studies into the very issue of ‘missed’ or ‘delayed’ diagnosis of T1 in children. A paper published last year in the BMJ looked carefully at this issue. It found that One-in-Five children were not diagnosed at their first encounter. For the fourteen children where further detail on why was available the findings were:
Of these, six had fasting glucose blood tests arranged by the GP and four were given alternative diagnoses (urine infection, viral infection, tonsillitis, puberty) and diagnosed at a second appointment. Two children were diagnosed with psychological problems: In one case the child’s mother had seen the GP alone to discuss her child’s ‘obsessive drinking’ and was advised to see the school counsellor, and in the second the GP apparently felt the symptoms were psychological and the child was diagnosed in the emergency department four consultations later. One other family had already performed a finger prick glucose test at home which was high but the GP did not trust the result and asked the child to come back later in the day with a urine sample. In the final case, the child’s mother had spoken to a health visitor and suggested diabetes but was told “no, not unless the child is lifeless”. The mother took the child to the GP 12 days later and the diagnosis was made at that consultation.
From this, we can see that the issue is a complex one. In half of these diabetes was considered.
In the ‘forgivable’ column, I’d put the six GPs who arranged fasting glucose tests, the GP who wanted a urine sample, and the GP who didn’t see the child at all. This is most of them. The seven who wanted further testing are easy to fix — they need educating that a random capillary glucose is good enough in the presence of symptoms.
The GP who didn’t see the child sounds like a unique circumstance.
The cases where alternative diagnoses were given are tricky, without having seen the child in front of us, for the reasons I’ve outlined above. Puberty is perhaps the most potentially spurious of those diagnoses though…
The clinicians I am worried about most though, are the GP who put the symptoms down to psychological causes, and the health visitor.
What can we do?
To quote Tony Blair: ‘Education, Education, Education’ — this needs to have two threads:
- Parents. The four Ts need to be spread far and wide. From the study linked above, children with parents who suspected diabetes were 1.3 times more likely to be diagnosed on the first visit. Tell your friends, get some posters from DUK , get them put up in your local GP, nursery, primary school etc. Offer to speak at PTA meetings to spread the word. Hold a Q&A on Mumsnet. Get it out, far and wide.
- HCPs. Diagnosis of Type 1 Diabetes simply on random capillary blood glucose is a relatively new thing. There are GPs floating around the system still who started out having to send everyone for fasting glucose tests. There is a role for patients here too — go into your GP practice, and offer to speak at an education session (most practices will have these at least periodically) for a short period about your diagnosis story, and how it could have been better. When hospital medics learn about how to manage emergencies they first of all go through A for Airway, B for Breathing, C for Circulation. But then there is DEFG — Don’t Ever Forget Glucose. By informing GPs that they can diagnosis Type 1 Diabetes on the strength of a finger prick in the presence of symptoms, we can help them to think of doing a BG reading as part of the their standard assessment. A 50p test strip is much cheaper than lab blood tests anyway.
The most important thing, I think, it that we shouldn’t be looking for recriminations. The best way to improve patient safety through more timely diagnosis is to take a ‘no-blame’ approach. When we start throwing around blame, people throw up defences, and this kills off any possibility of having a genuinely productive dialogue.
We owe it to those who might be diagnosed in the future to forgive those who may have missed our diagnosis and to help them not to make the same errors in future.