20 May 2021
It’s been 3 years since the pilot launch of www.cancercaremap.org in 2018. A lot has happened in that time, not only to the delivery of cancer care, but to the world as we know it, and support services in the UK have found new ways to adapt to the world we now find ourselves in.
Co-director, Robin Pritchard explains how the project came about and their plans for 2021.
“The original idea for Cancer Care Map came from broadcaster Jonathan Dimbleby, Chair of The Richard Dimbleby Cancer Fund. Our work at the time was focussed predominantly on the Dimbleby Cancer Care services at Guy’s Cancer Centre, but we were always asked by people how they could find out about what support services were available near them. We commissioned some research to look into this with Guy’s and St Thomas’, and also begin to map services in the wider local area. What we found was that there was no comprehensive central place to go to find out about cancer care in the UK. There are directories of support services for specific tumour groups or run by other charities to signpost their own services, but we couldn’t find anything that showed you everything that was available to you solely focussed on cancer support. And if you just went to ‘Google’ it was hard to know where to start, or if the information you came across was up to date or was giving safe, trusted advice. So that’s where Cancer Care Map came from: we wanted to create a comprehensive, free to access, trusted directory of cancer care services in the UK – not just the well-known information centres like Maggie’s and Macmillan, both of whom we now work closely with, but all the amazing community and smaller charity-led organisations operating all around the country, providing care and support not just to those diagnosed with cancer but the families and carers supporting them.
We carried out a series of workshops with patients, carers and GPs to find out what they wanted and launched the pilot site in 2018. We then went live with the full site two years ago on #WorldCancerDay 2019.
The biggest impact on cancer care and the cancer community in that time has of course been COVID-19 – not only the virus itself but the knock-on effects of isolation and delayed cancer treatments. When the first lockdown happened in March 2020, many cancer support centres had to close their doors. That meant all that face-to-face support that is so important to people living with cancer suddenly stopped. People who were going through treatment had to shield and isolate. To many people going through treatment or living with cancer, the information centres and counselling sessions and support groups are their lifelines. Cancer didn’t go away, and all those feelings of anxiety and isolation were only heightened by the pandemic. So organisations very quickly adapted what they were doing. All the many helplines and online support services already out there really came into their own, and other services moved their support to reach people virtually through phone calls, Zoom and video calls, chatrooms and even virtual exercise and group classes.
It’s meant that many cancer care organisations can now connect with people further afield than their local area. Organisations have worked incredibly hard to keep services running, opening centres for face-to-face support when they could to those most in need, and ensuring that those isolating at home still felt connected. And people have really embraced online and virtual support like never before. Social media often gets bad press, but there are some wonderful online communities out there helping people through really difficult times. Cancer Care Map has been able to bring all this information together to connect people with the kind of support they may not have even realised it out there.
As things begin to open up again in summer 2021 it will be so good to see support centres opening up and face to face support able to happen again. But many of the new ways of connecting with people virtually will continue. It’s a new way of reaching people and supporting them when they need it most.
When we first launched the site, we had 150 organisations on the map. Today we have over 2,300 and are adding more each week. We are working with NHS healthcare trusts across the country to ensure we have all the services in their local area on the map. Once information is listed on Cancer Care Map, we make sure it is updated regularly – and with services adapting their support as lockdown rules have changed over the last year, this is really important. At the moment we are able to ensure everything is checked every 3-6 months and we hope to move this to every 3 months over the coming year.
We’ve been lucky enough to have been able to work right the way through since last March. We’re a small core team of three and began working from home straight away. As we’ve secured more funding over the last 12 months, we were able to expand the team and, in the summer, began working with additional content editors.
We’ve also been working with a digital company called AND Digital who have developed a brand-new version of the site. They’ve done all the work pro bono, despite the challenges of the last year, and we launched the new platform in March this year. We’re really excited. Our aim is to continue to grow Cancer Care Map and ensure that anyone in the UK affected by cancer knows that we are here to help them find the support they need.
And so when you have a patient in front of you, whether they are living with cancer themselves or are supporting someone who is, by pointing them in the direction of Cancer Care Map you can be confident that they will find help they can trust, information that is up to date, and hopefully support that they didn’t even know was available to them.”
Cancer Care Map is a stand-alone, comprehensive, independent, free to use online directory of cancer support services in the UK providing verified and trusted information, regularly checked and updated and accessible to all.