Lyme support program

People with Lyme disease find themselves in isolating situations.

Managing diagnoses, interpreting test results, examinations, medications and treatments creates a lot of stress. Balancing the huge and unexpected medical costs, eroding savings or losing family income adds to overwhelming feelings of helplessness for many people.

Some people have little or no support, and coping can be especially difficult.

Some people experience medical discrimination, which further increases their feelings of isolation and burden. In some cases, entire families suffer from Lyme disease, making their situation extremely difficult to manage.  

Sadly, some people feel they cannot manage; they reach a crisis point and determine to take their own lives. Since 2010, 23% of patients who have died as a result of Lyme disease took their own life.

Pilot Program

Recognising the urgent need to assist people in crisis, the Lyme Disease Association of Australia (LDAA) designed a pilot Lyme Support Program.

The Program offers a range of helpful resources to vulnerable people in Australia with Lyme disease who are experiencing a crisis in their situation and who need professional support. The Program provides for patient advocacy services and crisis counselling as well as a community support team.

Connecting with people that understand Lyme disease is vitally important. The Lyme Support Program team includes volunteers with a lived experience of Lyme disease who have undertaken a range of crisis counselling and suicide prevention training. Lyme aware independent and professional patient advocates and counsellors are also working with us to provide much needed support for patients.  

Program duration

The pilot Program will run from November 2019 until June 2020.

What might we learn?

Results of the Program will inform the feasibility and potential scalability of dedicated support services for people in Australia with Lyme disease.

During the pilot stage of the Program, information will be collected from participants to improve the support services offered. At the conclusion of the Program, qualitative research will provide information about what Australian Lyme patients need most and will provide insights into the efficacy of these services in alleviating some of the serious issues faced by patients.

How we are doing

Throughout the Program we will report on how we are doing via this dashboard. Our dashboard will be regularly updated. We’ll report on how many people we have helped, how long we have spent helping them and the overall cost of that help. 

Dashboard

88 patients590.65 hours$61,049.21

Dashboard Information

People supported is a measure of the number of people who have requested professional support under this program.

We are helping many more Lyme patients through self-care, education and resources and we will report on this at the conclusion of the program.

Hours of support is the number of hours our support team has spent directly supporting people as part of this program.

Support cost provides the cumulative cost of how much we have spent supporting people participating in this Program.

Patients say:

“Many times I’ve felt like I’m just going over the cliff and I reach out for help to other organisations and it has always helped me to take a step back off the cliff. But being able to talk to someone who has a lived experience of Lyme makes it like many steps back off the cliff .”