October Newsletter - Request for Feedback

Dear Friends,

Our monthly newsletter has now been going for a year and a half, and I’d like to hear back from you on what you think of it, and how you think we could improve it and make it as useful as possible. I’d also like to have your feedback on some of our other activities, and whether they’ve been useful to you, and your thoughts on some questions we are currently working on. In particular, I’d really appreciate an email at Neil@clladvocates.nz on all or any of the following:

  1. Newsletter

Choice of topics so far, format, and topics you would like addressed in future editions. Suggestions for expanding the readership, and anything you may be able to contribute to this.

  1. Private Facebook Group

We are closing in on the “100” milestone, but there are at least 2,000 NZers with the condition, many of whom would benefit from what CLLANZ has to offer them, as would their friends and families. Please think about how you could assist with this.

  1. Our website

Are there comments/suggestions regarding our website – content, usefulness, additional material you would like to see? How can we extend subscribers and visitors to the site?

  1. Research

We have another summer studentship getting underway this coming summer, a study on how many NZ CLL patients are taking ibrutinib, and questions about access, funding, response monitoring etc. This is the second we have undertaken, with funding from the Bay of Plenty Medical Research Trust. Do you have ideas on research projects we could consider for next year’s scholarship?

  1. Patient stories

We would really like to expand this section. Please consider telling us yours, which you are welcome to do anonymously.

  1. Patient Booklet

Have you read it and do you find it useful?

  1. Focus groups 

Would you be interested in taking part in an online focus groups to discuss what would be the most useful support we could provide for you as a CLL patient or family/friend. CLL related questions?

  1. Clinician-led webinars/ Q&A or small group discussion sessions

Would these be of interest? I know that some informal groups that have been formed through connections on our Facebook page.

  1. Advocacy activities

Hopefully you’re aware of our various advocacy activities. These have included significant engagement with Ministers, Members of Parliament, the Health Select Committee, Pharmac and other relevant government health agencies, the Pharmac Review Panel, other patient advocacy groups, submissions, seminars, presentations, petitions and marches. Do you think this work is useful? Are you interested in taking part?

  1. Succession planning & volunteer help

Recently, two of the key CLLANZ drivers became unwell at the same time, and there was a period where CLLANZ ground to a standstill. If we had some volunteers willing to step up to temporarily covering roles at these times, that would be helpful.

On that note I’d like to record that my own health has deteriorated significantly, and I will need to pass the CLLANZ baton to someone willing and in a position to take this on. If you’re interested or have a suggestion for someone suitable, please do email me at Neil@clladvocates.nz

Thank you for your support and encouragement over the past few years.

Best wishes,

Neil Graham