Happy New Year! Hope you had a great festive period.
There have been so many discussions about language over the past years and rightly so. I don’t tend to contribute to these discussions as I can see both sides of the argument and I don’t think the 280 character limit of Twitter enables a rational discussion on this topic to be undertaken. I hope that this blog post may help to provoke some sensible discussion. There are a few areas I think worth exploring.
I think this is key to any discussions about language and diabetes. What is acceptable to say in one forum could very well be unacceptable in another. What is acceptable for someone with scant knowledge of or contact with diabetes, may certainly not be acceptable to someone that is in regular contact with diabetes (or dare I say it with diabetics!). The key is not to stifle discussion. I think that the current situation where any perceived deviation from the textbook way of talking about diabetes is jumped on heavily is counter-productive. I don’t think this does any favours to those with the condition, those who are talking about the condition, or most importantly those who are at risk of getting any type of diabetes. I expect healthcare professionals are sometimes scared to talk to people with diabetes in case they slip up and then face the ire of a social media deluge. It is a minefield for the media too. Why do the media get facts and language about media so consistently wrong? I suggest that at least in part it’s because it’s so hard to get right for a non-specialist.
Talking about diabetes is good even if facts are not always correct. Stifling that conversation is not.
Any type of diabetes is tough to deal with and clearly nobody wants to have it. However, if discussions about risks of complications or the messages about how vital it is to be engaged with your condition are deemed too hurtful to those with the condition, it risks people not fully understanding the seriousness of diabetes. Additionally, particularly in terms of those at risk of developing type 2, a strong message needs to be presented. People must understand the potential consequences of their action or inaction and what can be done to avoid them developing the condition. If these strong messages aren’t deemed appropriate, will those people at risk people hear? Diabetes UK were berated for such messages in October 2019. Chris Askew (Chief Executive DUK) made an excellent and measured response to those complaining about the content of the flyers being hard-hitting. My view is these messages need to continue without fear of upsetting those with the condition. It’s not about shaming or telling people with the condition that it’s all their fault – even if their lifestyle maybe in part to blame. It's certainly not helpful to point out past issues once diabetes has developed and clearly diabetes happens for many reasons many of which are outside people's control. However, for those where it isn’t too late to make a change, these messages need to be loud and clear. Those who have the condition but aren't engaged need to be reached too. Far too many people with any type of diabetes just can't or don't 'get it'. Simple messages with clear content will get more people to understand - fluffy language aimed to make sure nobody's offended, even if they aren't the target audience, I fear will only dilute the message to a point where it becomes lost.
Shortly after the DUK issue was the Paul Hollywood incident, which is my next point.
Humour and Diabetes
Is it OK to joke about diabetes? Paul Hollywood commented that a dish was “diabetes on a plate”. Whilst I didn’t find it funny, I certainly wasn’t offended and was surprised at the level of anger that was directed towards him. I don’t think the response showed our community in a good light. I can however see why it offended and think it was right that he was challenged for saying it. However, I don’t think it was dealt with correctly by some. Again, audience seems to be an issue. I’m not offended as it won’t affect me. Nobody has ever shown prejudice towards me on account of my diabetes. However, I understand that particularly as a child, these type of comments could be hurtful and spawn comments from others who don’t understand anything about diabetes. It could result in them being targeted by friends and classmates making a difficult situation even harder. That said, people with diabetes need to be resilient. They need to stand up for themselves constructively, educating those who know nothing about the condition – everybody who is engaged with their diabetes is an ambassador for their condition. Children will be teased or even bullied, it’s sadly inevitable. How to handle that is a key life-skill and something I wish that I’d been helped with during my childhood.
So can a joke about diabetes ever be funny or allowed? The answer to this has to be yes. Humour is often targeted at adversity and difference. You only have to watch an episode of the Last Leg on Channel 4 to show that disability and difference can be used in a humorous and constructive way. That said, the audience and timing of a programme like the Last Leg is very different to that of Bake Off. Paul Hollywood almost certainly said what he did without malice and borne out of lack of knowledge of diabetes and the potential impact of what he said, especially to his younger audience. We can’t expect those with no contact with diabetes through their lives to understand this without help. I certainly had no idea prior to my diagnosis 13 years ago – I have a science degree and did Biology A-Level and still knew/remembered nothing about diabetes. Forcing an apology through angry confrontation doesn’t seem right. Rational explanation and insight seems a far better way. This should be given by those living with the condition. It is sad that this information probably wasn’t communicated to Paul at the time via those people, however I am sure that DUK will have contacted him in a sensible and rational way and hopefully explained his error. Shouldn’t we all be a bit more measured in our responses like DUK?
It certainly does. The audience and focus for this groundbreaking document is somewhat different. This is directed at those that live and work with diabetes. It’s mainly for HCPs talking to PWD. However, many HCPs are under immense pressure and many are generalists. They see people with hundreds or thousands of conditions. They see many people who don’t take their medicines when they are meant to, refuse to be engaged with either the HCP or their condition. Language is important here. However, we must cut some slack to these great employees of the NHS. They don’t all have the time or capacity to read and digest a document such as the language matters document. Even if they have, how many times at your place of work do you get a policy and remember all the details? Especially if your contact with PWD is sporadic. Encountering an engaged PWD may be even rarer. HCPs work for the NHS generally because they care. However, it must be very stressful if one slip in language causes them to be berated either on- or off-line. Groups like the excellent DSN forum are therefore vital to help all DSNs to understand the message around language and be ambassadors for diabetes through the whole healthcare system. We can’t rely on the message getting across through a document alone. PWD need to learn from the Language Matters document and understand that how they speak to people outside of the diabetes sphere creates an impression of our community. Less anger, more dialogue seems to be the way forward.
I know you'd be disappointed if Libre wasn't mentioned at all in one of my blog posts. There's not a great deal to say except that there are currently unacceptable delays to dispensing of Libre from pharmacies. Abbott are communicating badly with both the pharmacies and their customers. Libre is an essential device to many. Being unable to dispense sensors for more than two weeks, despite there apparently being no shortage of sensors is amateur at best. Abbott need to take control of their supply chain or find another way to get the sensors to users. They have made a rod for their own back by not going via the standard supply chain route through pharmaceutical wholesalers. It may be time for them to review that decision. There are already moves by insurance companies in the US to fund Dexcom over Libre. If the price of the Dexcom in the UK can come closer to the Libre, perhaps via the G7 iteration, there is potential for the market for Libre to decline quickly and significantly. The delays to launch of the Libre 2 certainly aren't helping. That said, I don't think the Dexcom customer service is any better than that of Abbott's and they are dealing with far fewer customers.
As for 'diabetes on a plate', that pretty much defines bake off and always has. Bake your cakes and eat them on that scale and you will probably induce T2D. In a way I think it's good that that link is made -- if you eat lots of sugar and processed white carbs, it could affect your health.
But when you're having a hypo, you're going to need some form of sugar to bring you up. Of course it does not help that 'sugar' is not a medical term. It used to be called blood sugar in the old days... much more correctly it's blood glucose.
One could simply go on forever about language -- it's in its nature to evolve.