Ways to share your experience - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Ways to share your experience

LorraineD profile image
LorraineDPartnerRoy Castle
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We are often approached by people trying to gather evidence from people living with lung cancer. Here are our latest 2:

1 ALK + patients/ carers

ALK + patients - we have been contacted by a company undertaking research on patient experience to help with the development of a new information resource/website. looking for people to participate in 2 workshops in London. Follow this link

havas-lynx.typeform.com/to/...

or email maria.kekic@havas.com

maria.kekic@havas.com

2.NHS Experience of cancer

Tell us your stories!

The NHS is working hard to beat cancer. At the moment we are focusing on faster diagnosis and treatment of lung, gut (colorectal), and prostate cancers.

We are doing this because we think that faster access to treatment for cancer will mean better outcomes for patients, and a better experience of NHS services – including people who had a ruling out of cancer.

We want to better understand the impacts of new pathways for diagnosis and access to treatment.

If you:

•Are based in London or Manchester

•Received a cancer diagnosis or all clear within 4 weeks of first talking to a health professional about your symptoms; and

•Were asked in for a CT scan based on the results of a chest X-Ray.

We would like to hear from you what it was like to go through the tests and receive a diagnosis or an all clear.

How your voice will count

You may receive a request to be interviewed over the phone, asked to join a focus group discussion, and/or take part in filmed interviews in July.

The stories we hear will be used to make videos and written case studies which we will show to senior leaders in the NHS, doctors and other colleagues working on cancer, and members of the public.

Achieving better results for patients is why we come to work. So we want to understand and showcase impacts of the work taking place across the country to improve diagnosis for patients on a suspected cancer pathway.

Contact Kaz Obuka

Public and Patient Engagement Manager

NHS Cancer Programme

T: 011380 70644 , kalu.obuka1@nhs.net

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LorraineD
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Daisy47 profile image
Daisy47

Good Morning LorraineD! NHS experience of cancer will be interesting to follow. My particular story is a strange one. I have posted it on this forum. I lived with cancer, a cyst and sarcoidosis all Sharing the same lung lobe. Large and lung crushing, which I had for decades. Symptom free, no coughs, breathing normal. As the cancer could not be seen on scans despite it being 11cm, I had no idea until 5 weeks post operation I was told at consultation that the cyst of 8.5x6.5 was joined together, the granuloma was not seen because of the cancer. It’s been 15 months since my Thoracotomy. It seems unbelievable, but I am grateful that I am cancer free. Sarcoidosis is permanent, but liveable with. The Manchester Hospital TGH I am with I am with for follow up. Have excellent staff across the board. Sorry about waffle and repeating myself.

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