In November 2019 RDNZ conducted a survey to highlight the barriers within the current health system for people living with rare disorders.
The NZ Voice of Rare Disorders survey had almost 300 respondents, making it the largest survey of the rare disorder community ever in New Zealand. Patients, whanau and carers shared stories of the challenges they face to access healthcare, as well as the impact of living with a rare disorder on education, employment and other areas of life.
The evidence from this survey led to the priorities in our Fair for Rare NZ campaign, which is calling for the development of a National Rare Disorders Framework.
Some of the clear barriers to access to vital services and supports are demonstrated below:
Three quarters of all respondents have some or a lot of difficulty with seeing, hearing or moving;
80% have a decrease in income, and 30% are unemployed because of a rare disorder;
35% often felt unhappy and depressed (at the time of the survey);
31% felt they could not overcome their problems (this is concerning as current access to mental health support is very challenging as evidenced in the qualitative section);
Over 60% felt communications and information exchanged between services was poor;
40% cannot afford the recommended treatment (rehabilitation equipment, home care);
Almost half of carers and patients spend more than two hours a day on disease-related tasks (49% in NZ, compared to 42% in Europe);
81% of people had a specialist visit in the last six months.
The results provide a benchmark for future research as well as comparisons with the experience of people living with a rare disorder in other countries.