Survey of Patient Experiences during the COVID-19 Pandemic

AMMF and other members of the Cancer521 alliance of cancer charities and organisations have helped in the development of a survey of patients with rare and less common cancers to find out more about their experiences during the coronavirus pandemic.

The survey is being organised by Cancer52, who will also analyse the results and share a full summary with all its charity members. The results of this survey will help us to understand how the COVID-19 crisis has affected people with rare and less common cancers, particularly on topics like treatment and support; issues around shielding, and anxieties, concerns and hopes for the future.

Cancer52 will use this information on behalf of its member cancer charities and organisations, in discussions with the Government, the NHS and industry to continue to push for the best possible care and treatment for people with rare and less common cancers.

The data shared by participants will be non-identifiable. Neither names nor contact details will be collected in this survey – all data will be anonymised.

The survey can be completed by patients or by those who care for them.  The views and comments of all those with rare and less common cancers are vitally important, and AMMF would encourage as many as possible of those with cholangiocarcinoma to take part.

If you would like to you see the questions before taking part in the survey, a downloadable version is available by clicking here

To take part in the survey, click here

Survey closing date: Monday, 29 June, 2020




A Message from Cancer52:
Sharing the data with relevant member charities
If Cancer52 receives responses from 20 people or more with the same type of cancer, Cancer52 will share the data collected in this survey on that type of cancer only with the relevant Cancer52 member charity so that they can understand how the pandemic is affecting the specific groups of people they help. The data shared will be non-identifiable.

Cancer52 is not collecting names or contact details in this survey. Cancer52 will not share the data with any other organisations unless legally required to do so. To read more about Cancer52’s privacy policy, click here.

About Cancer52:  55% of UK cancer deaths are from rare and less common cancers. Despite this, these cancers remain severely under-represented and under-funded across all areas, including policy, services and research.  Cancer52 is an alliance of 100+ cancer charities and organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases.

AMMF is an active member of Cancer52, and AMMF’s CEO, Helen Morement, has served on Cancer52’s board since 2014. 

To see all Cancer52’s member charities and organisations, click here


June 2020