Every year on the 28th of February, hundreds of organisations around the world come together to raise awareness for rare diseases, and improve access to treatment and medical representation for individuals with rare diseases and their families. It is an opportunity to advocate for the 300 million people worldwide living with one of the 6000+ identified rare diseases, and a chance to shine a light on what it is like to live with a condition that most people have never heard of.
Many rare conditions, like #cavernoma, are lifelong and complex. As a result, people affected by rare conditions often need support and expertise from a wide range of healthcare professionals such as GPs, specialist hospital consultants, specialist nurses, physiotherapists, occupational therapists, speech and language therapists, and learning disability nurses. This can mean having multiple appointments across different settings and on different dates.
Well-coordinated care can make a real difference to people’s quality of life by alleviating stress, reducing the ‘burden of explanation’ on the patient and providing comfort and reassurance to patients & their families that their care is under control.
We conducted a simple survey on our social media channels to find out our community’s experience of coordinated care, and the results prove the importance of raising awareness of this topic and of advocating for change. A whopping 91% of those who responded said they felt their care had not been effectively coordinated.