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.
Our goal is for each of the four UK nations’ rare disease framework implementation boards and delivery partners to commit to collective development of a quality standard for rare disease, and for work to begin on this before the end of 2023.
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 aren’t mandatory, but they support 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 clear actions for commissioners and healthcare providers.
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. Quality standards have been shown to improve care by demonstrating what good looks like, and they provide measures that can be audited to show how individual services are performing.
This call is particularly timely, because of the increasing pressures on NHS services across the UK. When staff time is limited, and waiting lists are high, it is easier for rarer and more complex conditions to be overlooked. A quality standard for rare disease is vital to ensure that there is an incentive to focus on rarer diseases, and to prevent the gap in outcomes between common and rarer conditions continuing to grow.
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 firstname.lastname@example.org.
Independent Advisory Group Membership
Sue Farrington, Chair, Independent Advisory Group, Co-Chair, Rare Autoimmune Rheumatic Disease Alliance, Chief Executive, Scleroderma and Raynaud’s UK
Dr Graham Shortland, Consultant Paediatrician/SWAN Lead, Cardiff and Vale UHB, Member of Wales RDIG
Dr Peter Lanyon, Co-Chair, Rare Autoimmune Rheumatic Disease Alliance, Consultant Rheumatologist, Nottingham University Hospitals NHS Trust
Emma Kinloch, Chair, Salivary Gland Cancer UK
Dr Robin Lachmann, National Specialty Advisor for Metabolic Disorders, University College London Hospitals
Phillippa Farrant, Adult Support Worker for Wolfram Syndrome UK
Sue Millman, CEO, Ataxia UK
Tony Lockett, Senior Lecturer in Pharmaceutical Sciences, Centre for Pharmaceutical Medicines Research (CPMR), King’s College London
Dr Lucy McKay, CEO, Medics 4 Rare Diseases
Natalie Frankish, Policy and Engagement Manager for Scotland, Genetic Alliance