An opportunity to learn from others who have travelled your path
Malini Raj and Susan Hughes have chronic conditions that have had a major impact on their life. Both are committed to helping other people take ownership of their health and are active members of patient support groups.
These are 10 benefits they say patients with a chronic or rare condition can gain from reaching out to a patient group:
- A chance to meet and form connections with people who have experienced what you are experiencing. This may be particularly helpful if you are feeling isolated, fearful or lonely.
- Being able to talk to others who understand the day to day challenges helps to fill the emotional gap.
- Gain access to authoritative factsheets, literature and videos about your condition, often produced specifically for Australian patients at various stages of their health journey.
- Find out which doctors, allied health professionals and pharmacies have a special interest in your condition.
- Access carer support networks that may be beneficial for the people who take care of you.
- An opportunity to turn a negative into a positive and help other patients by participating in the groups’ activities.
- An opportunity to influence government policy by strengthening the voice and reach of the patient support group.
- Invitations to social events and information sessions addressed by the top doctors in their field.
- Self-caring tips and advice based on the real-life experiences of others. In Susan’s case, she finds focusing on her diet is beneficial. So is a daily swim.
- An opportunity to help pharmaceutical companies to better understand patient needs.
Source: Interviews with Susan Hughes (Dragon Claw) and Malini Raj (Australian Pituitary Foundation)