What information do newly diagnosed cancer patients need?

In the next idea from ‘Let’s talk cancer’ we look at how we can give patients the information they need upon being diagnosed with cancer.

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.

Improve information for newly diagnosed cancer patients, suggested by David Clinch

I was given my diagnosis in five minutes flat and then the nurse spoke to me in a busy corridor in the hospital, she gave me a booklet and with that I was allowed to go home and worry. The waiting and the unknown are incredibly stressful and completely unnecessary. Patients should have secure online access to their own “treatment pathway” so they can better understand what is going to happen next, what the possible outcomes will be and most important of all, how long they are going to have to wait for the next appointment/treatment. This patient interface should sit on top of whatever system is in place (assuming cancer care in Wales has a digital joined up system of course!), it could also include any number of links relevant to their particular disease as well as providing a contact/query function.

Practitioner Responses:

Kath Elias, Macmillan Oncology Physiotherapy Specialist

Again I agree this idea is essential, PABC often are so overwhelmed by their diagnosis they do not absorb any information given to them.  I think that if there was an all Wales system that all new cancer diagnoses were inputted into and this created an automatic referral to an information and support care coordinator type person. Then everyone with a new cancer diagnosis could be given an optional appt to receive appropriate information by a cancer specialist. This would also then overcome the issue of deciding when the best place is and time to give patients the information they require. Making the approach more Co-productive. Letting the patients decide when they want to receive the information.

Phil White (GP):

Secondary Care has accumulated an army of specialist nurses who are supposed to give this support, and some are excellent. However some seem more concerned with “signing people up for research projects” than providing a service (quote from a patient).

AnnMarie Nelson, Scientific Director Marie Curie Palliative Care Research:

Some clinicians have provided a recording of the consultation to their patients to listen to when they are ready.

What are your views on this idea? How can we give cancer patients the information they need at the point of diagnosis? We want to hear what you think in the comment section below.

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