Focusing on the individual – Making cancer feedback permanent

In the next idea from Let’s talk cancer, Jon Antoniazzi considers a permanent feedback mechanism for cancer patients.

This week on Click on Wales we’re featuring a series of practitioner responses to ideas to improve cancer care in Wales, crowdsourced between June and July 2015 through the IWA’s Let’s talk cancer project. Over 6 weeks patients and their carers posted their idea for how to make things better for those affected by cancer in Wales. In all we had around 100 ideas submitted. We’ve taken these ideas to a panel of practitioners who have given their responses to the 12 ideas we shortlisted using voting on the website. Here’s what they’ve said. We’ll be using the responses to help inform our final report which we’ll publish in September.

Let’s talk cancer has been a learning process, both from the perspective of Tenovus Cancer Care commissioning the project and for the Institute of Welsh Affairs in dealing with the logistics and engagement of very specific groups of people.

 Through the large number of great ideas for shaping the way cancer care works, one thing stood out above all else. How is the NHS in Wales using user experiences to design services? Yes, we survey people on their satisfaction and we have focus groups, but how often do we stop and ask, what could have been better or what would you do differently?

Before the Let’s Talk Cancer report is published, I can say that it has been a major lesson in why we need to focus on the basics. How is someone communicated with about delays in their treatment; where can someone access welfare benefits advice; how to travel for treatment whilst being too ill to drive or not having a loved one to drive?

In challenging times, when clinicians are busier than ever, it’s difficult to get these basics pushed up the agenda. Let’s talk cancer was at it’s very core an experiment in ‘patient involvement’, a spit and sawdust look at how we could make things better. What has been clear from the responses and our work with clinicians was that patients are not designing services, and because of this services can all too often feel untouchable and outside of anyone’s control.

There are some important lessons that can be taken away by Local Health Boards and clinicians. One of them will be to create a permanent process of patient feedback – whether that is using the same technique as Let’s talk cancer or devising other innovative ways to canvass how services can be improved. By working towards creating a culture of critical friends, Health Boards can become more confident that their services are meeting the needs of people affected by cancer and show that they are really listening.

How important is feedback to the cancer care process in Wales? How could a permanent feedback mechanism be established for people affected by cancer?

Jon Antoniazzi is the Policy Officer for Tenovus Cancer Care

2 thoughts on “Focusing on the individual – Making cancer feedback permanent

  1. As long as the hackneyed excuse-all phrase ‘lessons have to be learned’ is not repeated endlessly and any future discussions/interactions are not just ‘tick boxes’ for the ‘professionals’ (quote ‘we have consulted and engaged with the stake holders’ bollocks), then, of course, most of us would welcome better systems of patient/NHS ‘feedback’.
    So many of the patient provided suggestions in the worthy ‘Let’s talk cancer’ exercise have been so obvious and simple that it seems amazing that the ‘professionals’ were not ‘aware’ of them. The words ‘different’ and ‘planet’ spring to mind.

  2. Macmillan Wales believes asking more people affected by cancer in Wales for their feedback to design and improve cancer services is fundamental to providing good care.

    There is already some great work going on to ask patients for their feedback. This includes the first Wales Cancer Patient Experience Survey, carried out by the Welsh Government in partnership with Macmillan in 2013. More than 7,300 Welsh cancer patients – 69% of those who were asked – completed the 80 question survey giving their feedback on all aspects of their cancer care from how they were told they had cancer, the information and treatment they were given and the support they received when their treatment ended. The survey’s results were published in a Wales-wide report and in individual reports for each health board and trust. We hope the survey gave and continues to give health boards and the government an in-depth insight into what is working well and what can be improved. The survey is set to be repeated in the near future to ensure we can understand where improvements have been made and where there is work still to be done.

    More widely, we know people affected by cancer have opportunities to be involved in health boards’ patient forums to give their views on cancer services. Some health boards have staff whose role is to support user involvement and many also carry out their own surveys of patients asking for their feedback. In 2014, cancer patients were also asked to be involved in focus groups across Wales for the inquiry into the implementation of the Welsh Government’s Cancer Delivery Plan.

    But there is definitely more that can be done to support patients and their carers to give their views on care and how services are delivered. Macmillan Wales would love to hear ideas from people affected by cancer about how cancer care can be improved. You can send your ideas to [email protected] or tweet us at @MacmillanCymru.

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