“This powerful report demonstrates for the first time the similar needs and experiences of people living with rare autoimmune diseases. It speaks very clearly of the shared needs to reduce diagnostic delay in all stages of the pathway, to improve care coordination across specialities, and of the pivotal importance of empowering clinicians and patients with greater knowledge.
Whilst our unique alliance between professional society and patient charities in this disease area has an important role in identifying and supporting solutions, their implementation will require concerted action across the community. We therefore need your support, whether you are a clinician, commissioner, policy maker or patient.
Thank you for reading this report, which we hope will catalyse further progress to improve the lives of people living with rare autoimmune rheumatic diseases.”
Dr Peter Lanyon, Chair, Rare Auto-immune Rheumatic Disease Alliance
In 2013, the UK Strategy for Rare Diseases was published, which for the first time since the establishment of the NHS, provided direction for the healthcare needs of people living with rare diseases. The strategy was well received and signed by the health ministers of each country in the UK, with cross-party support; it contains 51 distinct commitments that are designed to improve health and social care for rare diseases.
There is however, a concern that the focus of the strategy and implementation to date has been on rare genetic conditions, with a worrying lack of focus on the 700,000 or so people living with non-genetic rare diseases. Four years on from the publication of the strategy, this lack of focus on rare autoimmune diseases means that there is a risk that the needs of people living with these conditions are being left behind.
To explore this further, in 2016, we conducted a survey of their patient members, designed to assess their experience of specific aspects of care highlighted by the UK Strategy for Rare Diseases.
The survey was sent to people across the UK who are living with a rare autoimmune rheumatic disease. It was distributed via social media, e-newsletters and forums, had 47 questions and received more than 2,300 responses from across all four nations. We published a report based on our analyse.
Key findings:
- 55% of respondents reported feeling either not very or not at all confident in their GP’s knowledge of their condition
- 61% of respondent’s state that they are struggling to cope with their condition