View this email in your browser


– In Confidence –

Introducing the Patient Support Program

September 4th, 2019


You have been identified as someone who is already 'giving back' to the Australian Lyme disease community or have reached out to volunteer specifically for this program.  In recognition of your past and future contributions, we are opening this invitation to you.  This has been a long-time dream of the LDAA and we'd like to both acknowledge and partner with current active community members involved in patient support.  

About the program
Subsequent to our Pre-Budget Submission earlier in the year, the LDAA has recently been awarded a small grant from the Department of Health to pilot a Patient Support Program (PSP).  After some scoping and planning, we are ready to progress the program. As a result, we are now seeking expressions of interest from members of the Lyme community who are already providing support for patients in various forms to participate in the PSP as community care volunteers.

We have established that there is a critical need for better support for the cohort of Australian Lyme patients who are most vulnerable and unable to be catered for within the prevailing medical system. We have also established that patients seem to be best supported by people who have a lived experience of Lyme disease, even if they are not necessarily trained in counselling or crisis support services.

The program we have designed empowers patients who might need some self-serve advocacy information, right through to those who require the services of a professional independent patient advocate.

What is required
As a LDAA community carer in the PSP you will be expected to undertake formal training in Accidental Counselling, Suicide Awareness, and/or Suicide Prevention. These training courses range from 6 hours to a full day commitment, depending on the program that best suits your level of knowledge. The LDAA will fund the training on your behalf.  For those participating, the training will formalise what you are already doing, and offers the advantages of working with the support of a dedicated and specialised team, albeit an electronic/virtual one.

In return, the LDAA expects that you will provide your time to support the Lyme community with your new knowledge and maintain a commitment of at least 1-5 hours per week to support patients, as needed, during the pilot program timeframe to June 2020.

Given the program is a pilot, we also require some flexibility and adaptability in how the program is delivered and we hope that you will be an active contributor in helping us make the program work for everyone. We will require community carers to sign a non-disclosure agreement and undertake to uphold patient privacy. Community carers will require access to a computer and internet and a phone service.  If you currently see patients in a practise, you are prohibited from inviting the PSP patient participants to your practise.

Know someone who should be invited?
If you know someone who's interested and capable, has lived experience as patient and/or carer and did not receive an invite, please let us know at

There's hopeful scope for patient support beyond June 2020
If you are at a place in your Lyme journey where you are both willing and able to provide support back to the community and are keen to learn new skills and become certified in crisis counselling and suicide prevention, then please seriously consider this opportunity.

Outcomes of this pilot program will inform the feasibility and potential scalability of dedicated and fully informed support services for people with Lyme disease. Qualitative research gathered from pilot participants will provide deep knowledge about what Australian Lyme patients need most and will provide insights into the efficacy of these services in alleviating some of the issues faced by patients, especially when supported by others with a lived experience.   Your activities for the duration of this program will be covered by LDAA’s insurance policy for volunteers.

We anticipate launching the program publicly in October or early November, however training will need to occur in Sept / October.  Until the program is launched publicly, please consider all communications about it confidential.

To indicate your interest in participating, please email us at confirming your interest, that you have the required tools and your willingness to complete a non-disclosure agreement.

Best regards and




Like to make a difference?
Join Our Team!
Lyme Disease Association of Australia
Copyright © 2019 Lyme Disease Association of Australia, All rights reserved.

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.