At Genetic Alliance UK we get asked this question a lot. Many of the patients we work with are not sure what type of service a Centre of Excellence provides and whether the hospital they attend is a Centre of Excellence. This is understandable as there is no official definition for a Centre of Excellence. There are, however, a number of helpful documents we can use to understand what a Centre of Excellence is and what it should provide for patients affected by rare conditions. One of these is the UK Strategy for Rare Diseases – published by the UK Government to improve health and social care for the 3.5 million people who will be affected by a rare condition at some point in their lives.
A Centre of Excellence is essentially a specialist clinic where expert health professionals (doctors, physios, speech therapists etc.) come together to provide the very best care and treatment for patients affected by conditions that affect a number of organs and tissues (multisystem disorders). There are different centres for different types of conditions.
Centres of Excellence can be virtual networks of expert health professionals (based at a number of connected hospitals) or can be based within one hospital building. They should work with local healthcare services to manage a patient’s condition. The ‘UK Strategy for Rare Diseases’ lists a number of key characteristics that every Centre of Excellence should have. For example, centres should provide coordinated care, make arrangements for children to transition into adult services, and be engaged with people with rare conditions.
Centres of Excellence should also have a sufficient number of patients under their care – they can’t say they are an expert based on one patient!
They also have to be doing research, because research into rare diseases is vital to improve diagnosis, care provision and to enable the development of new treatments. They can do this in a number of ways, such as clinical research within the centre or supporting registries to collect and share information in a safe and secure way to help other researchers better understand conditions. Centres of Excellence are great places to do this because they bring together both patients and clinical expertise under one roof.
Alongside the recommendations identified in the ‘UK Strategy for Rare Diseases’, our study found two additional characteristics that every Centre of Excellence should have. They are that: Centres should provide education and training for healthcare professionals to share expertise; and that they should share knowledge with other Centres of Excellence and specialist clinics to make sure the best rare disease care standards are available to all.
It is important to note that no one is in charge of labelling a Centre of Excellence and it’s up to each individual specialist clinic to decide if they want to call themselves a Centre of Excellence. There are many specialist clinics that offer excellent care, and meet the criteria of a Centre of Excellence, but have decided not to use the term.
Please get in touch with our Public Affairs Manager Farhana Ali, if you have any questions about Centres of Excellence.