Let’s talk cancer

The IWA’s ‘Lets Talk Cancer’ project asks people to suggest changes to cancer care in Wales

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.

Lee Waters is Director of the IWA

4 thoughts on “Let’s talk cancer

  1. Let’s talk cancer …………………….. let’s get treatment in England!

    Well done Mary Burrows, you are doing just the same as so many of us here in Wales have been doing for the past fifteen years.

    Come on, spread the word. Good medical treatment is but just a short car trip away!

  2. But for unrelenting negativity you don’t have to go anywhere. Karenand friends will serve it up right here at home.

  3. My husband Huw was diagnosed with prostate cancer in Oct 2010, at Maelor hospital Wrexham. He was immediately given oral medication prior to receiving Zoladex injections, which lowered his PSA reading drastically. 8 weeks of radiotherapy(delayed until after our holidays!) followed in March 2011 at Glan Clwyd. I have nothing but praise for these hospitals, for the care and attention both medically and emotionally which he received. The attention to detail given by all staff at all levels was exemplary.
    Since then he has been monitored bi-annually and the degree of care and attention still continues.

  4. Maggie’s centres offer free professional emotional, practical and social support of anyone affected by cancer and their families and friends. We are lucky to have one such centre based in the grounds of Singleton Hospital, Swansea. When cancer is diagnosed it falls like a pebble in a pond and the impact often ripples across families many of whom have had great benefit from visiting Maggie’s. Having a second Maggie’s centre at Cardiff is very exciting prospect.

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