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MDS and COVID-19 - Clinical Care and patient experiences

Thank you for your interest in participating in this survey, hosted by the MDS UK Patient Support Group.

Here are the details about this survey:
  • This survey is being conducted to find out how you, as MDS patients and families, have coped during the past few months of the COVID-19 pandemic, as well as how your MDS care may have been affected or changed.
  • This survey is being sent out via the MDS UK Patient Support Group, and is open to all MDS patients and caregivers to complete. It has been designed collaboratively by MDS UK Patient Support Group and experts from the UK MDS Forum.
  • This information will assist NHS haematologists and MDS UK to review the care and assistance provided to you, learn from any issues and identify any opportunities that arise.

  • There are 8 sections to complete. They may not all apply to you.

  • Please try to answer as many questions as possible. It should take you 20-30min to complete the survey.
  • If you are a caregiver, please answer from the perspective of the patient
    • Number of sections 
      • Section ABackground questions
      • Section BYou and your general health
      • Section CYou and MDS
      • Section DCOVID-19 questions
      • Section EHow you’ve managed at home
      • Section FYour MDS care during COVID-19
      • Section G - Access to your GP surgery or hospital
      • Section H - Overall care during the COVID-19 pandemic
      • Demographics
  • GDPR – confidentiality and anonymity
This survey is designed to be completed anonymously.

Results will be shared with NHS staff, so they can understand how the pandemic is affecting MDS patients specifically, and so that they can address any issues that have arisen since the start of COVID-19 lockdown on 23rd March 2020.

We will not share the data with any other organisations unless legally required to do so.

You’ve been sent the link to this survey, either because you have given us permission to do so as a member of MDS UK, or because another support group, or your clinician, thought it would be relevant for you.

If you have any questions about this survey or how it will be used please contact: or your clinical team.

Thank you for your interest and input.


Question Title

Please confirm that you will allow us to share your data with NHS staff as explained and that you wish to proceed with the survey