Having spent some time at the Diabetes Professional Care conference yesterday, I found it presented me with two observations:
The reassurance that there are some healthcare professionals out there that have a forward looking view and understand that we, as patients, are interested in our healthcare and want to be involved in ensuring that how it goes forward meets both our and the NHS needs.
The reinforcement that there are still a lot of people in the NHS that think that patients should know their place and that only the healthcare professionals could possibly be experts.
The first of these is fantastic to see, and people like Partha Kar are at the forefront of understanding that the world has changed and that people like me have as much access to information as the HCPs do. In fact, I probably spend more time reading research papers and studies in my spare time than most HCPs do in their jobs, as it directly relates to me.
What was disappointing was the second point. While we understand that the world has changed, this is a challenge to many in the Exhibition halls. The idea that I might know more than a DSN or a Diabetologist, especially about how my diabetes works is an anathema.
Well here’s the thing. I’ve written before about conversations that I’ve had with clinicians at Diabetic clinics, and you know what? When those conversations result in my questions going over the top of their head and being referred back to the head consultant of the clinic, then yes, I probably do know more. When I am speaking to a DSN about something that they have never seen before, then yes, I have used the internet to discover new things that might assist me, and therefore “know more”. We know our place, and arrogance from a professional community that doesn’t know its own place is wholly frustrating. As I learned a long time ago, we are all people. We can all learn from one another.
In response to Partha’s challenge in his session for us patients to come up with a model that we’d like to see for diabetic care, I’ve started a couple of topics on the diabetes.co.uk forum. There are two separate ones – one for T1s and one for T2s. Now I’ve asked the question there because it is the largest concentration of diabetics on the web (yet some HCPs hadn’t bothered to even interact with that population when trying to undertake a remote care study!).
While I have not yet formulated the feedback I have received into something that is presentable, and they’ve only been open for a short period, it will be published.
One of the key points that I will be including is the need to accept that there are two tiers of patient. Informed and uninformed, if you like. The informed amongst us manage and treat our own diabetes with care. We understand how we work and some of us even keep up to speed with the research in our condition. You might call us experts in the various things that go on with our bodies and the “My Diabetes Science Experiment”. We aren’t going to call up the DSN every time we need to change something. We are perfectly able to record the details, review the patterns and then react to them.
If we have bigger issues, like discovering our insulin may actually be dangerous (Lantus) then we go to see someone for more assistance. That’s when we want the help.
Granted, there are many T1Ds that either can’t or don’t want to be allowed to get on with it and need much more support, but those of us who care enough to make our way to a Diabetes Professional Care conference need to be recognised. We are not stupid and we don’t sit back and take it. We take an active role in helping others who aren’t getting the service they need from the NHS as it works now. One size doesn’t fit all!
We are out here. We are part of the global Diabetic On-line Community #DOC and we care. Use us.