FAQ

You can help by completing our survey with any questions you have about living with and beyond cancer. We are looking for questions that research hasn’t found the answer to yet, but you don’t have to worry about that. We’ll check to see if your question has already been answered or not.
We would like to hear from people who were first diagnosed with cancer as adults (aged 16+) or those who look after or have looked after someone who was first diagnosed as an adult. We also want to hear from professionals and volunteers whose day-to-day work involves treating or supporting adults affected by cancer. Please visit the survey page for more information.

In accordance with the JLA’s fundamental aims, only those representing patients and heath care professions (who would not normally be involved in setting the research agenda) are able to prioritise the uncertainties. Non-clinician researchers or organizations which represent them will be excluded from prioritisation. Representatives of organizations deemed by JLA or the Steering Group to have conflicts of interest will also be excluded.

The ongoing Teenagers and Young Adults Cancer Priority Setting Partnership (age at diagnosis of 13 – 24 years old and including survivors above 24 years old) means that a natural split of age groups to be addressed separately could be children, teenage and young adult and adults. The Steering Group felt that a separate childhood cancer Priority Setting Partnership would be more appropriate given the following:
• Adults are the faster growing group with more instances of issues relating to living with and beyond cancer compared to children.
• The unanswered questions arising for children (and adult survivors of childhood cancers) and adults would be different and the issues relevant to children could be overshadowed by adult specific issues.
• To focus effort and obtain meaningful results as childhood cancers are rarer than adult cancers.
• The way the Priority Setting Partnership would need to approach and work with children would be very different to an adult Priority Setting Partnership.
A childhood cancer Priority Setting Partnership is not confirmed at present, NCRI intends to carry out further consultations on this issue.
Please visit the survey page for up to date information.
We are asking people questions about themselves (for example, their age, gender and type of cancer) so we can check we have heard from a broad range of people and carry out survey analysis. We will NOT ask your name and contact details as part of this survey, so no one will be able to identify you in the survey results. All the information you provide and questions will be collected, analysed and published completely anonymously.
No. The most important thing is to draw on your personal experience. It is enough to write a short sentence about something that is important to you, but for which you haven’t been able to find an answer. Our team will turn them into questions.
It doesn’t matter if your question has previously been researched, as we will check that for you. It’s most important that you ask any question that is unanswered for you. If your question has in fact been answered, and others are also asking a similar question, this highlights a gap in communication. This will help us to identify answers that need to be made more readily accessible.
You can submit up to 3 questions. Your questions can be written in any order of importance, but should be the most important to you.

Any questions about living with and beyond cancer are welcome.

To help you, here are some examples of the questions that have been submitted for health conditions other than cancer:
• Are breathing exercises helpful in controlling asthma?
• How safe is it for my breast-fed baby if I take antidepressants?
• What are the most effective ways of supporting carers of people with dementia living at home?
• What psychological support should be provided for patients in Intensive Care?

That’s absolutely fine. Please contact us by emailing lwbc@ncri.org.uk, by telephoning 0203 469 6307 (9am to 5pm Monday to Friday or please leave a message with your contact detail outside these hours), or mailing LWBC, NCRI Executive, 407 St John Street, London EC1V 4AD.
Guidelines provided by the James Lind Alliance detail the process all Priority Setting Partnerships must carry out when creating a list of the most important unanswered questions. Find out more about this process here.
All questions are reviewed by the Steering Group. If your question is unanswered by research then it will form a list of questions to be prioritised to a ‘Top 10’. Any questions that are not prioritised will still be published as an unanswered question that can form the basis for future research.
The Top 10 uncertainties (many cases Top 25) will be publicised widely to ensure that researchers and those who fund research really understand what matters to people affected by cancer. This project is being facilitated by the James Lind Alliance, which is part of the National Institute of Health Research. The top uncertainties will be directly reported to the NIHR Evaluation, Trials and Studies Coordinating Centre, which provides evaluation and funding of research for the NIHR. They will be promoted to many other research organizations and relevant funders in the UK. We anticipate they will directly influence future research funding calls.

We will develop the uncertainties into research questions and develop strategies around each of the priorities which will form the basis of planning around any future work in living with and beyond cancer research.

The questions that do not make the top 10-25 uncertainties are not forgotten. They will be available on the Living With and Beyond Cancer PSP website and the James Lind Alliance website.

This PSP and next steps will help to build solid research evidence base for addressing the most relevant priorities allowing NHS and other service providers (e.g charities) to implement and ultimately improve the quality of life of people living with and beyond cancer.
Recalling personal experiences associated with cancer may potentially lead to upsetting thoughts or emotions. Further support can be found through:

Macmillan Cancer Support
https://www.macmillan.org.uk/
0808 808 00 00 Monday – Friday 9am – 8pm

Marie Curie
https://www.mariecurie.org.uk/
0800 090 2309 Monday – Friday 8am – 6pm; Saturday 11am to 5pm

Shine Cancer Support
http://www.shinecancersupport.org/
hi@shinecancersupport.org
Shine runs a private Facebook group which young adults with cancer can request to join:
https://www.facebook.com/groups/shinecancersupport/

Disclaimer: The Living With and Beyond Cancer PSP does not exercise any editorial control over the web sites linked to on these pages, and therefore cannot be held responsible for the information, products or services contained therein.

Please contact us by emailing lwbc@ncri.org.uk, by telephoning 0203 469 6307 (9am to 5pm Monday to Friday or please leave a message with your contact detail outside these hours), or mailing LWBC, NCRI Executive, 407 St John Street, London EC1V 4AD. We will get back to you as soon as possible.