New Diabetes UK role puts type 1 at the heart – by Jen Grieves
Since February this year, Roxane Caplan has been in the newly created role of Type 1 Lead at Diabetes UK. I went and had a lovely chat with her to find out what exactly it means to be Type 1 Lead and how us lot living a Type 1 life might benefit from this focused role and can be involved in shaping plans.
In a nutshell, I’m told this role is to champion a Type 1 focus across Diabetes UK into the wider world – from media, to HCPs and also to people with diabetes themselves.
‘We want to work with people living with Type 1 to address the gaps. This is something we don’t want to do in isolation; it has to be driven by patient need.’
With that in mind, Roxane has spent the three months since she’s been in post speaking first-hand with patients, healthcare professionals and other organisations to get a clear indication of what’s working, and what can be improved when it comes to the lives of people who live with or close to type 1.
I asked Roxane what her main focus will be over the next year or so as the role takes shape. She told me the priorities are:
Not a small undertaking by any means. It’s great that Diabetes UK have created a role that is focused on the Type 1 cause, but from that mighty list it seems that a role such as this has been a long time coming. So why now?
‘We know that children and young people with type 1 can face some of the worst outcomes. The statistics show us that there’s a lot more to be done.
‘Some of the figures are shocking – the DKA rate in young people for example. Cases of type 1 are on the up – the need is great. We’ve been doing a lot of work in this area for many years but by having a central point of coordination and leadership I hope will help us do more.’
Mortality rates and life expectancy are pretty big hitters, and they’re often the terrifying headlines we see coming out of mainstream media. But what about the day-to-day grind of life with type 1? Those of us who are trying to lead ‘normal’ lives in spite of those frightening statistics?
‘One of the key pieces of work going forward is to make life easier on a day-to-day basis for people with type 1. There are critical gaps at various points in life where a person with type 1 really does need focussed support. With people with Type 1, I’m looking at what we offer at the moment and how we can market and communicate this better, this is why our work has got to be driven by people who deal with this day in and day out – so that we can create and develop new tools, services or campaigns that help people in a meaningful way.
‘The one thing that people of all ages have told me they’d like us to do more of, is to raise awareness of Type 1 as a distinct condition from Type 2, both amongst the general public and healthcare professionals..’
I was curious as to whether Roxane had received overlapping feedback from healthcare professionals and patients in terms of where there are failings in care and/or support for those with type 1 in the UK. HbA1c levels here are way outside the <7.5% target, and given that I know how much we’re all trying to do for ourselves and our condition on our own, we must surely pay attention to why this might be the case?
‘Bridging the gap in understanding what healthcare professionals can feasibly offer and what the patient really needs is a big focus. The relationship between the two can create hugely positive outcomes if there is trust and openness, and fear of judgement will not aid that in any way. We can play a pivotal role in helping HCPs understand what the needs of those with type 1 are. We have a platform and we must use it to help break down some of those barriers that some patients experience.
‘We also want to empower patients to that they’re equipped to take action when they know they’re not getting the care they should be receiving.’
Roxane emphasised a focus on the community side of type 1 – and how she wants to work to enable more people with type 1 to share experiences and find comfort and support from those going through a similar experience.
We know there is a desire and a need to be connected face-to-face as well as online – the sense of isolation people with type 1 can be quite pronounced, so through our new young adult events we want to reach more people and encourage them to attend. We also want to make sure everyone is catered for by providing adult events as well as events for children and young people. We don’t want people to feel alone in this.
So what’s next in the coming months?
‘We’re going into a research phase with focus groups, online communities and surveys taking place, to make sure the views we have so far collected are representative of what people of all ages with Type 1 feel. That will take place over the summer.
‘Currently we don’t offer anything at the point of diagnosis, so that’s an obvious gap for us and we want to ask people what that might look like and what would be helpful to provide.
‘We’ve got to put people with type 1 at the heart of this.’
So, dear people at the heart, what would you like to see being fulfilled with this role? Let me know and I’ll feed back!
This post first appeared on Jen Grieve’s blog.