In 2020 we asked for members of our community to share their experiences of care to date. The purpose of this survey was to consolidate and add to previous national and global Neuroendocrine Cancer (NC)* patient experience surveys and reports, to gain further insights into the patient pathway for those diagnosed with NC.
From initial symptom, through seeking advice to diagnostics and treatments – does current experience of Neuroendocrine Cancer care confirm the influential factors identified in previous cancer care reports? We received 880 responses.
One questions asked respondents if they had a specialist Neuroendocrine Cancer Team involved in their care.
77% replied that they were under the current care of a specialist Neuroendocrine Cancer team.
Here are some of the responses that we received:
π¬ “Originally under general oncologist then a gastro endro oncologist and finally a neuroendocrine specialist team after 6 years at 3 different hospitals”.
π¬ “Yes, but I had to pursue it through my GP to get referred to one”.
π¬ “We asked several times but went for a second opinion referral to special NET team”.
π¬ “I am BUT only after constant requests to GP and Oncologist which were originally βhumouredβ”.
π¬ “Yes but only because I fought to be seen by the specialist team”.
You can read the full Barriers to Diagnosis report here β‘οΈ http://ow.ly/2zaA50Ec02q
Find out more about our Bridging the Gap campaign here β‘οΈ https://www.neuroendocrinecancer.org.uk/bridging-the-gap/
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