It’s been 3 years since the pilot launch of CancerCareMap.org on #WorldCancerDay 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.
To mark #WorldCancerDay 2021, we sat down (virtually) with Cancer Care Map co-director, Robin Pritchard to find out the story so far and the plans for the year ahead.
Why was Cancer Care Map originally launched?
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 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. We launched the pilot site in 2018 and then went live with the full site two years ago on #WorldCancerDay 2019.
Has cancer care in the UK changed in this time?
The biggest impact on cancer care and the cancer community 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.
How many organisations can now be found on the map?
When we first launched the site, we had 150 organisations on the map. Today we have over 2,080 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 change, 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 see a lot of worrying statistics regarding cancer and COVID-19, but we know first-hand that support services have learned to adapt their offerings virtually. What advice would you have for those people living with cancer looking for support?
The most important message from the NHS throughout the pandemic and particularly now as we find ourselves in another lockdown is that the NHS is still very much open for cancer services. Anyone with any worries or concerns should contact their GP. Don’t be put off. Get yourself seen. And all the charities and support organisations are adapting their cancer care services to provide ongoing support. There are so many ways to seek support – social media, online support groups, helplines, mobile apps. Have a look on Cancer Care Map and see what is out there. Isolation has had a big impact on anxiety and mental health, but there are wonderful organisations and tools out there that can really help. The cancer care community is very much there for you. When the NHS is under such pressure as it currently is, we’re here to help you find the support you need.
What does 2021 have in store for CCM?
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 all work remotely together to check, verify and update all the information on the map. That’s enabled us to grow the map and ensure everything is up to date. And in the background, 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 hope to go live with the new platform in March this year. The new site is an enhanced version of what you see now. It works in very much the same way but has enhanced search features that will enable you to find exactly what you need. Much of the improvements to the site are ‘behind the scenes’ which will enable us to manage the content in new ways. We’re really excited. Watch this space! 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.