Following the announcement at the end of last week from Diabetes UK that a new CEO had been appointed, there was much chatter online about whether or not the best person had been selected for the role. I have no opinion on this. I do not necessarily agree that you need a person with diabetes to be the CEO of a diabetes organisation – there are many other ways that meaningful engagement can take place ensuring that the organisation is representing the needs of people with diabetes.
What I was far more interested in was the direction the discussion took – specifically about the inclusion – or, as was being discussed, not – of consumers/patients/PWD/whatever you want to call us at professional conferences.
I watched on in silence as healthcare professionals, PWD and consumer groups all weighed in on the subject.
I have yet heard a good argument as to why PWD should not attend diabetes conferences. In Australia, just as in the UK, we have the same limitations about people with diabetes having access to drug-branded information. This is archaic because, well, the internet. But whatever. (Read more here.)
Notwithstanding these code regulations, there is no reason that a PWD should not be welcome at a professional meeting about diabetes, hearing about diabetes research, learning about diabetes medications and technology and talking with the healthcare professionals working with people with diabetes. And if it is deemed that we are not fit to see the brand names of drugs, then keep us out of the exhibition spaces, but allow us to attend information and networking sessions. (For the record, I don’t support that idea either, but if that is what is necessary for us to be able to attend the sessions, then so be it.)
I would go one step further. PWD should be involved in the planning of these meetings. Why? Because surely if HCPs working with PWD are hoping to improve their knowledge and understanding of diabetes, a big part of that is gaining a better understanding of people with diabetes. And there is no one who gets that more than those of us living with diabetes.
I absolutely do not subscribe to the ‘why can’t we have a professional conference for health care professionals’ viewpoint. Well, of course you can. But there is no reason that PWD should not be involved in this and attend alongside healthcare professionals.
I’ve been more than a little vocal on this in the past. Search ‘consumer involvement’ or ‘PWD at diabetes conferences’ on this blog and you might just come up with a few things. I’ve given talks both here in Australia and overseas about it. I constantly expound the value of the consumer voice and consumer participation and consumer involvement.
The thing that interested me in the discussion I was following was just how hostile it was at times. With 140 characters or fewer at our disposal, we can’t always be as tactful as we might be in person. Sometimes, being direct is the only way. And knowing a few of the people involved in the discussion, tact is perhaps not a characteristic that they generally employ. I say that without any snippiness at all – it is part of the way they get their point across. I get it – I am often accused as being like that and I wear it as a badge of honour. As far as I am concerned, the involvement of PWD is non-negotiable and if I sound pissed about it, I probably am!
But being hostile and aggressive is not likely to result in a favourable resolution.
Working for a diabetes organisation puts me in a unique position. As part of my work, I get to attend the very conferences from which other PWD are excluded. Plus I am frequently invited to speak and this privilege is due to a combination of my diabetes org work and also my work as a blogger and diabetes activist that I do outside of paid employment. It’s a sticky situation that I manage as best as possible. There are disclaimers everywhere and even the whiff of a conflict of interest is declared.
However, there is one thing that I have learnt from ‘being on the inside’ and that is working collaboratively is highly likely to produce results more than being combative. There is a lot of negotiating required at times and an understanding that things take time. Sometimes lots of it. It’s taken me a lot of time to understand that!
Call me – and those who are trying for a more collaborative approach – political or bureaucrats. You can think we’re sell-outs. We’re not. At all. We actually have a seat at the table and are working for people with diabetes. And you want us sitting at that table! Come join us.
So, think you want to get involved, but not sure how? There are myriad ways that you can try to work with organisations. If paid employment is not what you are looking for, there are many volunteering opportunities including Boards (some may be paid positions), advisory panels, expert reference groups or simply, pick up the phone and pitch your idea!