Prostate Scotland COVID-19 and Prostate Cancer Survey 2020

Our survey closed on Sunday 26 July 2020.  Thank you to all respondents for taking the time to give their feedback.

 

Prostate Scotland is undertaking a research survey to gain a better understanding of the challenges that have arisen due to COVID-19 and lockdown, especially for men with prostate cancer.

For the best of reasons and intentions, some of you may have had appointments re-arranged, treatments delayed, postponed or re-scheduled and for some their treatment pathway may have had to be unavoidably changed, whilst for many others treatment may have continued as expected.

To help support you, we compiled ‘Info Guidance pages’ for our website with the most up-to-date information available to keep you informed about COVID-19, prostate cancer and treatments.  We hope these pages have gone some way to help and to assist you and your family during these uncertain times. We will continue to monitor the situation and update these pages as new information becomes available.

We are hoping to gather some stories and experiences from men with prostate cancer and the affect that COVID-19 has had on their lives for example;

  • If you had symptoms that you were concerned about but delayed going to see your GP
  • You have been newly diagnosed and wondered what happens next
  • You are waiting, for example for surgery, radiotherapy or brachytherapy and this has been delayed, postponed or re-scheduled
  • Your treatment has continued as expected
  • Your treatment has continued as expected, but in a different venue
  • You have had treatment but were worried about follow up appointments or of catching COVID-19 after treatment
  • You are having or were about to start chemotherapy and treatments have been cancelled or altered/changed
  • You are ‘shielding’

However, you may have your own story to tell.

We are asking for your (and your family’s) help so that we have a picture of men’s experiences and perspectives.  We are also asking for your views on potential additional support that may be helpful for men now and in the future. If you are happy to participate then it can be done in one of 2 ways or both if you like!

  1. By putting pen to paper (or fingers to keys) and sharing your story or your experiences, concerns, worries and how Prostate Scotland can be of further help. You can email this me at mae.bell@prostatescotland.org.uk or call 0131 603 8663
  2. By completing the short questionnaire here and returning by Sunday 26th July to me by email at mae.bell@prostatescotland.org.uk or sending to the office at 14 Torphichen Place, Edinburgh, EH3 8DU.  Although we are working remotely the mail is picked up regularly.
    Alternatively, you can complete the survey through Survey Monkey  Please note the survey is hosted on the Survey Monkey website.

As we would hope to compile a short summary about the experiences of men with prostate cancer at this time, this summary can be used to help inform about what has worked well, if there have been any changes or pinch points, and also any additional services and support that may need to be considered and thought about going forward.  The NHS is looking to further remobilise, restart and take forward cancer services over the coming months and this information will be helpful to enable us to feed in to these considerations.

A wee while ago, men from all over Scotland participated in a survey from Prostate Scotland looking for views and experiences of being diagnosed with and living with prostate cancer.

As a result of the research and to help support and improve the experiences and lives of men with prostate cancer, Prostate Scotland is taking forward a new project called COMPASS which aims to help men navigate prostate cancer through a range of support and wellbeing services.  In time, it will cover information, courses, exercise programmes, workshops and support services.  I mention this just now as COMPASS may be even more relevant and necessary in the aftermath of COVID-19.

As with the survey questionnaire, please be assured that any information that you provide will only be seen by Prostate Scotland, so we have an overview of men’s experiences.   This information will be treated with the utmost confidentiality and anonymised. Your details will not be passed to any third party.  Our privacy policy can be viewed here.

I hope that you view this request for your stories, experiences or completing the questionnaire about prostate cancer and COVID-19 in a positive way.  Your responses will be very helpful in enabling us to get a further insight into experiences and perspectives of men with prostate cancer and their families during this time.

With many thanks in advance for participating.

Take care and stay safe.

With kindest regards

Mae Bell

Information and Advice Manager

mae.bell@prostatescotland.org.uk or 0131 603 8663

  • You can take the survey here or alternatively, you can complete the survey through Survey Monkey. Please note the survey is hosted on the Survey Monkey website.