Let’s talk cancer

Cancer patients and their families are being given a chance to suggest changes to cancer care in Wales in an innovative new project the IWA is launching today.

The ‘Let’s talk cancer’ project, hosted for 6 weeks on a new website letstalkcancer.wales, is asking the public to share their experiences online. What is the NHS doing wrong? What are they doing right? It will prompt those with direct experience of cancer care to suggest improvements, which we will work with experts to refine into workable policy suggestions for the NHS to consider.

Let’s talk Cancer From today we want to hear you experience of cancer on letstalkcancer.wales We’re looking for one good experience of you or a loved one’s care, and one bad. From there we want to know your idea of how to improve cancer care in Wales.  Here’s an example of the kind of thing we’re after. Post your experiences on our site here. Adateo Dabiri, 34, Cardiff Worst thing The fact that from what I could see of the cancer care my mother received when I visited her, the worst thing was that her background and beliefs weren’t taken into account. She’s from East Africa, Tanzania; she doesn’t view death like a lot of Westerners do. It sounds harsh, but I pity anyone dying of cancer here if they’re not white, Christian. My sister bought in food and music, and Mum wanted to talk about dying and actually, we’re a pretty noisy bunch… we wanted to celebrate her, but we were told to be quiet.  Best thing I would say that the nurses who treated my mother were kind. Maybe because many were from ethnic minorities themselves? I don’t know. Too few of them though.  What I would change Make dying better by acknowledging people’s cultural differences. Our lively, loud, colourful mother died quietly and couldn’t see us or feel us around her. That is not what she would have wanted.

“This innovative digital project isn’t about blue-sky thinking or celebrating medical breakthroughs that might help people further down the line. It’s about today” the Chair of the IWA’s Health & Social Care policy group, Prof Marcus Longley, said. “By drawing on the direct experience of people with fresh experience of cancer care we hope we can come up with practical and workable suggestions for improvement” he added.

We’ve been working closely with Tenovus Cancer Care and health experts to design the project over the last six months and it is our latest experiment in ‘crowdsourcing’ policy development.

We have drawn upon the experience of our previous two digital projects. Our first on

the devolution of policing and justice powers to Wales was run to inform the evidence of the UK’s Changing Union project for the Silk Commission on further devolution.  This was a closed project involving a discussion amongst 50 experts online. Our next project was an open one designed to engage the public in a broad discussion about Wales’ future in the wake of the Scottish Independence referendum. We worked with a range of partners and  succeeded in reaching out to 12,000 people over an eight week period in our digital Constitutional Convention.

Our cancer project will draw upon elements of both these initiatives. First we will ask people to share one good experience and one bad experience of cancer care in Wales. We’ll then take the suggestions to our practitioners panel of experts to digest the ideas and suggests ideas for change based on the experiences of the ‘crowd’. Their job isn’t to defend existing practice or to dominate discussion, but to test ideas and discuss where suggestions for change would be possible in a practical setting.  Once we have refined the ideas we’ll present them back to the ‘crowd’ to vote on.

We hope by the end of this process we’ll have a series of practical ideas tested by practitioners and based on the experiences of people that we can put forward for consideration by the political parties for their manifesto development.

The project is the latest product of the IWA’s new strategy to focus on developing proposals for change in four policy areas: the economy, governance, health and education. Our Economy report published in March, and our Constitutional Convention report published last week showed progress in the first two policy areas, and now our  ‘Let’s talk cancer’ project is our first foray into health policy. We have brought together groups in each of our policy areas and we are scoping several ideas in each to develop further ideas to help Wales flourish.