Cancer Insight: Experiences of diagnosis and/or treatment during the COVID-19 pandemic

The purpose of this project was to hear from patients and their friends, family members and/or carers who have been through a cancer diagnosis and/or treatment during the COVID-19 pandemic.

Experiences were gathered through the style of a detailed patient story, which were shared with the relevant Hospital Trust, University Hospitals of Derby and Burton NHS Foundation Trust (UHDB) and Chesterfield Royal Hospital NHS Foundation Trust (CRH) for a personalised response.

The insight gathered will be used to help inform future cancer commissioning decisions in Derbyshire.

This report provides an overview of all the experiences captured.

Key findings:

• People need clear information on how to prepare for, and what to expect from their first appointment: It was felt that this could include latest COVID-19restrictions, whether or not a friend/family member could attend for support and how a serious mental illness (SMI) is noted.
• Importance of recognising the level of support an individual may need as early as possible to ensure they feel supported throughout their journey: Some people felt they had limited professional and/or family support at their diagnosis and throughout their treatment, whereas others were thankful to have a family member/close friend accompany them for support.
• Information and advice throughout a cancer journey should be delivered in a tailored way to the individual: Some people were provided with a lot of information, others were provided with booklets and one person was left with a number of unanswered questions.
• People should be informed on the most up to date COVID-19safety measures: A number of people felt it was important to know what to expect when attending the hospital for treatment, including temperature checks on arrival, pre-op COVID-19tests and restrictions on visiting.
• People spoke very positively of staff involved within their care and treatment: Continuity was seen as vital with professionals to enable people to build up trust and get to know them.
• Most people found virtual appointments work well: However, it is important where possible for people to have choice regarding their type of appointment, i.e. phone, video or face-to-face.
• More available support from clinical nurse specialists (CNS): A number of comments were made regarding a lack of CNS support through various stages of their cancer journey and particularly for secondary cancer patients.
• Ongoing support should be discussed with patients to ensure a personalised approach: The level and type of support will vary depending on the individual and it is important for people to have a named contact to discuss any questions or concerns.
• Support for carers: Cancer affects the whole family, so it is important to ensure that family/carers feel supported.