We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system. So we are working to make sure that the voices of rare disease patients and families – and the voices of their carers, whether that is family, friends, clinicians, social care professionals – are gathered, and reported so that those voices count.
We are running our own short survey at the moment – and the response has been great! Spread the word and get more responses in so we can have a report ready to publish in the autumn.
In addition, we are working with the Public Health Agency’s 10,000 Voices Programme to make sure that their surveys can capture and report the experiences of rare disease patients and families.
There are two surveys currently running:
- Out of hours GP and emergency care; and
- the experience of contact with the health and social care system.
Both can be accessed through the 10,000 Voices website: www.10000voices.info
It would be good if as many people as possible can complete these surveys: the 10,000 Voices Team have facilitators who can help; and are keen to work with us to ensure that the experiences of rare disease patients and families are heard.