Hi, I’m Debra Montague and I’m the Founder and Chair of ALK Positive UK, and I was delighted this year that I was asked to speak at BTOG. Delighted and terrified is the truth. But anyway, luckily it was videoed, which was perfect. So, when I was asked to speak on the patient experience, and I based the presentation on a survey that we had done of our members in 2019 looking at not only their demographics, so we could understand the ALK population, what the average age was, male-female ratio, age at diagnosis, various things like that...
Hi, I’m Debra Montague and I’m the Founder and Chair of ALK Positive UK, and I was delighted this year that I was asked to speak at BTOG. Delighted and terrified is the truth. But anyway, luckily it was videoed, which was perfect. So, when I was asked to speak on the patient experience, and I based the presentation on a survey that we had done of our members in 2019 looking at not only their demographics, so we could understand the ALK population, what the average age was, male-female ratio, age at diagnosis, various things like that. We also asked them about their treatment, and so I’ve been able to share some of that in the presentation.
It’s been it’s been quite interesting to look at some of the similarities, but also some of the differences. There’s quite a difference across the country with frequency of brain MRI scans, for example, and treatment of bone mets, there’s some quite stark differences. And what was also interesting, we were able to drill down into regions. So rather than just be a North-South divide, which a lot of people do that breakdown, but actually we’ve been able to we’ve been able to break it down by all the regions across the UK. So that’s, so yeah, that’s been interesting.
Then we also asked our members for their overall, overarching feelings of their experience. And it was lovely to see the trust that they have in their team, and hearing back, them saying that they feel they’re listened to, they feel that the oncology teams that look after them are very empathetic and they hear what they say and they’re really caring, so that was lovely. So, we’ve been able to include that as well in that overarching- because it’s not all about how you’re treated in terms of treatment plans, it’s how you are treated as a human being that makes a big difference to people. So yeah, that’s what I’ve included in the presentation.