Last Friday, over 80 patients, families, patient organisations and health professionals gathered for…
On Tuesday 19 January 2016, our campaign Rare Disease UK launched a report looking at patient experience of rare disease called “The Rare Reality – an insight into the patient and family experience of rare disease”. This report follows a previous patient experiences report published in 2010.
Following the publication of the UK Strategy for Rare Diseases in 2013, rare conditions are now higher up the agenda for clinicians, policymakers and the media than they have ever been. Our campaign Rare Disease UK (RDUK) have carried out a survey to get an up to date picture of patient experiences to see if anything has changed since their first report. The report, launched yesterday at the Royal College of Paediatrics and Child Health, surveys 1200 patients, to monitor the early impacts of the strategy, and this heightened awareness of rare disease.
The findings of the report show that very little has changed for rare disease patients in the last 5 years. Patients are still experiencing difficulties in diagnosis, accessing information about their condition, receiving appropriate coordinated care, accessing treatments and finding out about research. The report highlights the reality of rare disease patients, putting an emphasis on their experiences in their everyday lives. The reality is that changes in the lives of patients, as a result of awareness, are not living up to our expectations. This makes the implementation stage of the UK Strategy for Rare Diseases even more important.
Key findings of the report include:
Alastair Kent OBE, Director, Genetic Alliance UK said:
“Progress is being made in policy – but this needs to be implemented to positively impact patients on the ground. Any positive developments for rare disease patients do not appear to be uniform across the countries and regions, or between different rare conditions. We need to ensure that all patients have fair access to appropriate care and treatment for their rare disease – no one should be left behind because they are ‘rare’.
The challenge now is to maintain progress were it has been made and encourage progress where it has been slower, to ensure the promise of the UK Strategy for Rare Diseases becomes reality in the years ahead (so that, hopefully, in 2020 we can report more positive changes).”
Click here to read the report in full.