Sue Farrington, Co-Chair of RAIRDA, is chairing a working group drawn from members of the UK Rare Diseases Forum, set up to explore the creation of quality standards for rare diseases.
The group is calling for the development of a quality standard for rare disease to improve equity of care for rare diseases across all four UK nations.
The goal for 2022/23 is for each of the four UK nation’s implementation boards to commit to collaborative development of a Quality Standard as part of their rare disease action plans.
What is a Quality Standard?
A Quality Standard is defined by the National Institute of Health and Care Excellence (NICE) as a “a set of specific, concise statements which act as markers of high-quality, cost-effective care across a pathway or a clinical area.” They cover a specific pathway or clinical area and are based on the best available evidence.
They are produced by NICE and can be used by commissioners, service providers, practitioners, partner organisations and charities. They can be referred to by partner organisations who want to follow a consistent approach when defining, measuring and delivering high quality care.
Quality Standards are not mandatory, but they do support and are helpful in the development and improvement of health and care.
Why do we need a Quality Standard for Rare Disease?
A Quality Standard for Rare Disease will drive improvements in care, address existing gaps in nation specific action plans, and establish actions for commissioners and healthcare providers. This would in turn, improve care and treatment for people with rare autoimmune rheumatic diseases (RAIRDs).
Currently, there are no real measures to demonstrate progress over time, in addressing issues that we know really matter to people living with a rare disease.
How to get involved
We are asking members of the rare disease community to sign up – add your logo or name – to our briefing setting out our ask. If you would like to do this, or would like more information please contact helen@principleconsulting.org.uk.