National Behçet’s Centres of Excellence

A Quality of Life survey undertaken in 2008 by Behçet’s UK (then Behçet’s Syndrome Society) identified that on average it was taking 12 years for Behçet’s patients to receive a diagnosis.

The Society began an application to the National Specialised Commissioning Group for Centres of Excellence to be established to treat patients with Behçet’s.  The bid was successful and the three centres were established in April 2012, in London, Birmingham and Liverpool.

Originally managed by Behçet’s UK, the NHS contract is now managed by the Behçet’s Patients Centres (a charitable company limited by guarantee). Behçet’s Patients Centres ensure the vision for patients is delivered, in conjunction with the Behçet’s UK.

What is a Centre of Excellence?

There is no official definition but this article produced by Genetic Alliance provides a good explanation https://www.geneticalliance.org.uk/news-event/what-is-a-centre-of-excellence/

The aim of the Behçet’s Centres of Excellence is to ensure that patients with Behçet’s can access timely diagnosis and receive optimal treatment across England. They provide a “one stop” service, aiming to provide the best care from diagnosis for this rare, chronic condition.

Where are the National Behçet’s Centres of Excellence?

The three National Centres of Excellence are based in London, Birmingham and Liverpool.  Use the following links to find out more information about each clinic including contact details.

London https://behcets.org.uk/london-centre-contact-details/

Birmingham https://behcets.org.uk/birmingham-centre-contact-details/

Liverpool https://behcets.org.uk/liverpool-centre-contact-details/

How do I get referred to a Behçet’s Centre of Excellence?

Find the referral process here  https://behcets.org.uk/wp-content/uploads/2019/05/CoE-Referral-Process-v1.1.pdf

Unfortunately, due to devolution the centres are only run by NHS England. Please follow the links below to find the current process for UK patients outside England.

Referral in Wales  https://behcets.org.uk/referral-in-wales/

Referral in Scotland https://behcets.org.uk/referral-in-scotland/

Referral in Northern Ireland – information to follow

Behçet’s Patients Support Service

In addition to managing the NHS contract Behçet’s Patients Centres also provide Behçet’s Patients Support service for patients registered at a Centre of Excellence.

This service funds a Behçet’s Patient Support Co-ordinator at each Centre of Excellence.  Find out what they do and how they can help here https://behcets.org.uk/wp-content/uploads/2019/05/Behcets-Patients-Support-v2.0.pdf

Useful videos

Introduction to London Behçet’s Centre https://www.youtube.com/watch?v=K8_0V5r7V2k

Introduction to Liverpool Behçet’s Centre https://www.youtube.com/watch?v=EcOO3kVFG1g 

Your first visit to the Liverpool Centre https://www.youtube.com/watch?v=I7p-_JuXFcY

Behçet’s and its treatment https://www.youtube.com/watch?v=PnGxisoVsjM

Complaints Procedure

Formal complaints about the National Behçet’s Centres of Excellence must be raised using the NHS complaints procedure which can be found here https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

In addition you can also highlight your complaint by contacting the Operations Manager at Behçet’s Patients Support, John Mather, by email john@behcetspatients.org.uk

Further details

Further details of the National Behçet’s Centres of Excellence can be found here: http://www.behcets.nhs.uk