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.

4 thoughts on “What information do newly diagnosed cancer patients need?

  1. Here we go again – talking about cancer as if it’s a single entity! This approach is so amateurish it beggars belief!

  2. Here at Breast Cancer Care we often hear that patients are inundated with so much information and as has been mentioned before, patients are often overwhelmed at the time of diagnosis to ask questions. Breast Cancer Care’s free HelpLine on 0808 800 6000 is ‘manned’ by specialist nurses and trained volunteers who have themselves had a diagnosis of breast cancer, to answer tailored questions to respond to individual needs. There also exists an Ask the Nurse email service which can be accessed from the Breast Cancer Care website at http://www.breastcancercare.org.uk. Information about a range of support and information events can be accessed on the website which are held throughout Wales to enable local access.

  3. Macmillan Wales has long campaigned for better information for people affected by cancer – including carers and relatives as well as the patient themselves. This information should be tailored to each individual as people may want information in different formats and at different times during their or their loved one’s diagnosis and treatment for cancer.

    Macmillan Wales funds a range of services to provide information and support to people affected by cancer in Wales. This includes our Information and Support Centres in hospitals including the University Hospital for Wales, Singleton, Withybush, Wrexham Maelor Hospital and Ysbyty Gwynedd. We also have services which give information that are not based in hospitals including libraries in Gwynedd. You can search for your nearest information and support service by visiting our website – macmillan.org.uk. More strategically, we are funding a project working with Public Health Wales to look at the information and support provision for cancer patients in Wales.

    People with questions about cancer can call our Macmillan Support Line for free on 0808 808 0000 (9am to 8pm weekdays) or visit our website any time.

  4. Wholly agree with Linda’s comments above. A cancer diagnosis can take place in a range of settings and this is can often be the point of the poorest experience and highest anxiety. Consistency is the watchword – anyone who is communicating a cancer diagnosis or involved immediately after, should be also be able to point a person in the right direction on the following issues:

    1) Name the Cancer Key Worker – This should be the person who is a consistent point of contact throughout the treatment process. A person that can be readily contactable, knowledgeable about the individual’s diagnosis and a signpost to additional services.

    2) Use cancer charities – Whether it’s Breast Cancer Care, Macmillan Cancer Support or Tenovus Cancer Care. At any point in the cancer journey, an experienced voice on the end of a phone or access to support services can alleviate anxiety and prevent unnecessary hospital/GP admissions. Cancer treatment can mean a direct impact on income and entitlement to certain benefits – we can help navigate this minefield and lessen a major point of stress.

    3) Give the individual as much or as little info as they want – The info someone wants to receive about a recent diagnosis is a wholly individual decision. Don’t be afraid to ask. For some it may be ‘I just want to know the basics; when does my treatment start?’ or for others ‘What’s the size of my cancer and what grade is it?’ Knowing too much or not enough can be a trigger for anxiety and moderating the amount of information imparted is about putting the patient in control.

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