Judith Buckle Award 2021

Awarded to Jan Mather

Jan Mather has been a driving force for the Charity in the past and was integral in the vision, and eventual creation, of the Behçet’s Centres of Excellence in England.

Jan became involved in the Charity, then known as the Behçet’s Syndrome Society, in 2003 when she started making Christmas cards for the Society, later in 2005, she became a Trustee before quickly stepping into the shoes as Chair from October 2006. 

Having Behçet’s herself and receiving exceptional care from her own multi-disciplinary team, Jan was determined to recreate this positive, patient-centred experience for all Behçet’s patients. She fully appreciated the difficulties faced by patients who had to see an endless number of different specialists at different hospitals on different dates, and the effort this took and the effect this had on them.  

Working with the then Vice-Chair Kathryn Proudlock, Jan drew up, on behalf of the Trustees, a proposal to NHS England to set up three Centres of Excellence for the diagnosis and treatment of Behçets, whereby patients could be seen by all the relevant specialists in the same clinic on the same date. It has to be mentioned here that Jan did want Centres of Excellence in all areas of the UK but due to the devolved nations being responsible for Health this was not possible; however, it remains a driving force for change within Behçet’s UK.

A significant part of their vision was that, as well as the medical staff integral to the running and delivery of patient-centred care at the Centres based in London, Birmingham and Liverpool, they should also have a Support Co-ordinator to help patients access benefit entitlements and overcome logistic difficulties, in order to provide a fully holistic experience.  These would not be NHS funded staff but were to be funded by means of an NHS grant.

After much discussion, the proposal was agreed on the basis of a short-term contract.  In view of the risks to the then Behçet’s Syndrome Society of employing staff when funding was temporary, it was wisely decided to set up a separate charitable company – now known as the Behçet’s Patient Centres – to hold the contract and employ the staff.  Jan then became Chair of the Directors of Behçet’s Patient Centres, relinquishing her role as Chair on the then Behçet’s Syndrome Society Board in 2013. I think we can all agree that she achieved a huge amount in the 6 years that she was Chair!

This scheme has proved to be a great success.  The contract has been renewed several times after rigorous annual reviews by the NHS and has been described by them as a model of good practice.  The Behçet’s Patient Centres has been fortunate to have employed some excellent and highly sympathetic staff in Jean, Rebecca and Jackie, as the three part-time Support Coordinators for London, Birmingham and Liverpool.  The clear benefits to patients, as can be seen in the feedback comments reported in the regular Behçet’s Patient Centres Matters newsletters, are a real testament to the success of Jan’s vision and the service that she has given over 15 years to the needs of Behçet’s patients and their families.

Not only did Jan work tirelessly to get the proposal accepted for the Centres of Excellence, she also supported patients with Behçet’s along the way with such kindness, empathy and engagement, but also with the ability to make you laugh and feel positive. A conversation with Jan always leaves you feeling re-energised and determined to face whatever challenges are in your way.

Along with her husband, John, her sister, Ruth, and her mum, Mary they have taken fundraising to another level, raising huge amounts for the then Behçet’s Syndrome Society, now Behçet’s UK.

Climbing Ben Nevis? Definitely!
Cycling from London to Paris? Why not give it a go?!
Taking on our Bike for Behçet’s, Run for the Rare challenge as team Behcet’s Patient Centres, and then as husband and wife on their holiday in France? Absolument!
And of course, at our most recent fundraiser, Behçet’s to the Beach, they were there, cycling and walking the miles!

And then there are the annual Ladies’ Balls organised by her sister, Ruth, all in aid of Behçet’s UK.

And those Christmas cards that go on sale every year? That is Jan and her mum Mary, working together to create gorgeous handmade Christmas cards for Behçet’s UK to sell for the past 18 years – with all profits going to Behçet’s UK, unlike other Charity cards which donate pennies.

Jan’s commitment to raising awareness, supporting patients and funding future events with Behçet’s UK through her, and her family’s fundraising efforts, never ceases.

It really is a very heartfelt thank you from all of us at Behçet’s UK, from all the patients and their families who came to know you during your time as Trustee and Chair, from all the patients and their families who struggle with this disease, and from all the staff at the Centres of Excellence and the Behcet’s Patients Centres, thank you for everything that you have done, and continue to do.

The Judith Buckle Award for 2021 is presented to Jan Mather.