Friday, May 4, 2012
What's in a type?
I met a wonderful teenager last week in my Type 1 adolescent diabetes clinic. Bouncy, vibrant, bright sparkly clothes..plugged into her IPhone...all seemed well..except that something just didn't seem right. Too many admissions, too many records in the notes of "non compliance" and on face value seemed like someone who just didn't want to do what the professionals wanted....or in simple parlance was probably not yet ready. For me, it had been a long hard day..another day explaining to my Respiratory brethren that seeing the lady with a urinary tract infection wasn't the unique domain of the "sugar boys" but our collective responsibility as physicians ( but more on that in the future!)...and the urge to fall back into a comfort zone of simply offering support " if you need it" was tempting. But then that annoying thing kicked in. That cocky belief that maybe I could make a difference...and it was time to at least try...keep the ego inflated enough, keep the self-aura alive...so what the heck...a try it was going to be.
Now I maybe a lot of things but lacking self confidence certainly isn't one of them, so I went on the charm offensive...chatting about anything but diabetes. We talked about Dave Grohl, we talked about Glee, we talked about the Hunger Games and then what we thought was the coolest apps around. it was fun and she was full of ideas about what she wanted to do when she finished her degree, how she wanted to set up a charity for animals...I sat there, chatted and frankly, got out-charmed by a mile and a half!
And then she paused and said..." So what's up doc? Genuinely interested in me and my diabetes or just being nice?" The next 10 minutes we chatted...somewhere in there she mentioned why she didn't take her insulin..she wanted to lose weight, her sugars weren't an issue for her, what was a priority was the drive to be slim...which I marvelled at as she wasn't by any stretch of imagination overweight.
And then the penny dropped. Her diabetes to the general folks around her, her college mates, her peers was the same as Type 2 diabetes. Everyone had made possibly friendly banter, possible snide remarks about how she was clearly "porky" as otherwise she wouldn't have diabetes and she had to "show them". her practice nurse had mentioned that she needed to have fasting blood tests as it was very important, which she had refused and been labelled as being difficult. The had been no conversation about preconception counselling, there had been no conversation about contraception....but there certainly had been how she could die of a heart attack. So there it was...in the eyes of her peers and some of her healthcare professionals, she just had "diabetes"...a condition which the Daily Mail had simply helped to ensconce in the public consciousness as " the problem that fat people get"...and sadly in the sea of type 2 diabetes, the poor patients with type 1 diabetes had simply got drowned. Forget the fact that the whole pathology is different, the physiological changes are different, the treatment is different, the approach is different...now it is one and the same...it's just...diabetes.
And sadly, this wasn't the first time I had heard that either. Plenty of my patients say how fed up they are with the lack of realisation from all and sundry how this particular condition "works", what needs to be different. Here are 2 examples...a young type 1 tried on Metformin as the practice nurse felt that the withdrawal of a particular type of insulin opened the opportunity to "try tablets" ( didn't he just look a bit porky...??)...result..patient ends up in hospital with ketoacidosis. Second one, an elderly chap with a stroke ends up in acidosis, as the doctor on the wards thought taking him off the sliding scale didn't need any insulin..after all this was just diabetes..and he was old..so surely an old man couldn't have type 1 diabetes? Well guess what Sherlock, old people DO have type 1 diabetes, try asking his GP, his wife...or maybe, shock and horror..even him.
Many a times I have said this and the more I work within medicine, a fact becomes clearer. We as healthcare professionals are too polite, too afraid to challenge each other. Forget the fact that a patient may have come to harm...oh no...far more important to keep the "team dynamics" ticking...ssshhh...lets not rock the boat.Too often, we politely mention the error with the challenger being the apologetic one! Sounds familiar?Yep, because we do so regularly. Well, maybe it's time to put not too fine a point on it. Withdraw insulin from a type 1 diabetes, they are without any intervention, more than likely to...hold on while i think of the physiology of insulin..oh yes..die. It's the same level of error as taking off the wrong leg, leaving a surgical towel inside the abdomen...so let's tackle all this with the same level of intensity.
Type 1 diabetes is NOT the same as Type 2 diabetes. In the political blizzard of "where should patients be cared for", with or without specialist input, Type 2 diabetes in general moved out.. and quite rightly too. What did happen at the same time was discharges of Type 1 patients or the non referral of Type 1 diabetes patients to specialists, and by failing to defend that, we, as specialists, did our patients a dis-service. Suddenly there was a belief that type 1 could be looked after in the community and maybe the well controlled, switched on, engaged can indeed, but the ones who need greater input, access to education programmes, access to pumps cannot. Is saying that arrogance? No, it's about the same level of arrogance as saying primary care can do everything. We all have specific skill sets and frankly the taxpayer paid a lot of money to train me as a specialist, understand the nuances of a type 1 diabetes patient, so why deprive the patient or the taxpayer? Primary care colleagues can, will and should look after majority of type 2 diabetes but please when you find a struggling type 1 teenager, then do, please, let me know and I will try my damnedest to make him/her a bit better. Sometimes it's not even treatment, but about just being there...ready for them when they want to make that change.
Part of me craves for a charismatic celebrity who had type 1 diabetes...look at what Stephen Fry has done for Mental Health or even Jade Goody achieved for cervical screening ( god rest her soul )...in contrast we have pretty much no one! Well, we do have the gorgeous Halle Berry who after the Bond movie looked like she had potential, but alas, then she had to go and do Catwoman....
Jokes aside, a celebrity backer would be useful but till that happens, we, who passionately believe in improving Type 1 diabetes, need to up our game. We need to engage with our local CCG, national bodies of power such as the NHSCB and explain why Type 1 diabetes needs to stay away from being commissioned with "diabetes". Maybe the condition itself needs a new name...I don't know...but something to showcase that it's not the same as type 2 diabetes. In people like Peter Hammond and Stephanie Amiel, we have powerful and passionate folks who all should pause and listen to. Shining examples which we all should aspire to be.
So, to anyone who reads this blog, specialist, generalist, nurse, patient...let's give it a try. If you have type 1 diabetes, then don't shy away from asking your GP for specialist help if you feel you need it. If your specialist isn't doing what they should, point it out. The rest of us..let's try to change the dynamics... Let's engage with the powers that be and try and actually make a difference in care, try and improve glucose control in patients where the evidence of long term outcomes is actually there...as specialists, let's face it, we don't provide the best possible care to our type 1 patients universally.
Maybe with shrinking resources, it's time to prioritise our Type 1 patients, adapt into educators or support structures for primary care as regards Type 2 diabetes, think about we can do and try and do it well, rather than not.
And oh yes, next time an Orthopaedic junior thinks its passé to omit Insulin in your type 1 patient, bring a bit of growl into that voice....at that moment, you are fighting the good fight for that patient who has ended up in ITU because of a callous mistake. Make sure it's never repeated again.