Services Initiatives Page – Jan 2016

SERVICES INITIATIVES

 

Summary

AMDF is committed to increasing its range of support services available to the mitochondrial disease (mito) community. In 2015 we conducted a Services Survey to gather feedback on the existing patient services and to find out what more patients and their families need.

Key Feedback

Helpline: There was an overwhelmingly positive response about the AMDF Helpline. The service was lauded and there was consensus about its value.

 

Support Groups: Many respondents indicated a desire for personal contact with other patients or carers. AMDF is developing a number of support group options – check out the recommendations below.

 

AMDF-Info-Days

Mito Information Days: Recognised as a valuable resource, they are currently held in major cities. To make them more accessible to those in regional areas, AMDF aims to establish teleconferences with guest speakers, including clinicians and researchers.

 

AMDF-Resources-&-Communication

Resources and Communication: The quality and quantity of online resources and communications received positive feedback. More web-based resources are being developed, some of which are detailed below.

 

AMDF-Patient-Registry

Mitochondrial Disease Patient Registry: The registration process is reportedly simple and respondents are happy with the privacy policy. Promotion of the registry should increase, as many were unaware of it.

 

Recommendations

In response to the survey and furthering its commitment to supporting people affected by mito, AMDF has developed the following initiatives.

Header---Support-Network

 

  • Maintain AMDF Facebook group as a virtual support group.
  • Incorporate support sessions into existing Mito Information Days.
  • Establish support groups run via teleconference for community members who live in rural or isolated areas.
  • Establish face-to-face support groups around Australia connecting community members who live in close proximity.
  • Extend the AMDF Support Network to enable more people to connect. (Support Network established October 2015)

 

Header-Advocacy

  • Advocate for members of the mito community to ensure they receive the support they are eligible for.
  • Collaborate with other rare disease not-for-profit organisations to gain greater recognition with the government.
  • Stimulate government funding for medical research through support of the Medical Research Future Fund Action Group.
  • Develop an advocacy program to educate politicians about the challenges faced by mito patients and gain their commitment to help make changes.
  • Campaign for changes in Australian legislation to legalise mitochondrial donation enabling women who carry the genetic mutation to have children free of mito. (Two symposia held in September started the conversation about the technique in Australia.)

 

Header---Education

  • Provide a Parent and Teacher Resource Kit to parents of children affected by mito to share with their child’s school. (Pack created November 2015)
  • Commence a mito education project in primary schools.
  • Establish information sessions via teleconference, incorporating guest speakers covering varying topics.

 

Header---Research

  • Fund research designed to assist patients and carers on a daily basis, for example investigating out of pocket expenses for people and families affected by mito.
  • Collaborate with prominent research institutes around Australia to attract and retain leading scientists and researchers into the field of mitochondrial disease research.
  • Position Australia as a prime location for clinical drug trials and inform those on the AMDF Mitochondrial Disease Patient Registry of relevant studies. (Permanent Mito Registry article added to the eNewsletter to increase awareness within mito community)

 

Header---Resources

  • Create Living with Mito section on the website. (Article on exercise published October 2015)
  • Provide information about the National Disability Insurance Scheme. (Web page created December 2015)
  • Provide information regarding government payments and support services through agencies such as Centrelink.

 

To read the full report from the Services Survey, click here.

To see a copy of the survey questions, click here.