Judith Buckle Award 2022
Awarded to Richard West
The award presentation was delivered by Behçet’s UK Trustee, Rachael Humphreys at the 2022 Conference & AGM held at the Holiday Inn Stevenage on Saturday 15 October 2022.
After two years of presenting the Judith Buckle Award virtually, it gives me great pleasure to present the Award in person, on behalf of Behçet’s UK, to Richard West.
When Richard was diagnosed with Behçet’s by Dr Dorian Haskard, he reached out to the then Behçet’s Syndrome Society for support and advice. Like so many of us, he spoke to Georgina Seamon and for the first time, he found someone who had so much insight and knowledge about Behçet’s that he no longer felt alone. He wanted to do the same so that patients did not feel alone, and wanted to make sure that Behçet’s, a disease he had never heard of prior to his diagnosis, became more widely known.
In 2001, Richard joined the Behçet’s Syndrome Society as a Trustee while Ruth Pearce was the Chair and over the last 20 years, he has dedicated a huge amount of his time, experience and knowledge into raising the profile of Behçet’s, both in the UK and across Europe. He has been a Trustee, Secretary, and Vice-Chair over the years and has always supported the vision of the Charity. Richard is committed to making Behçet’s care better for others and has been driven in advocating for and representing the patient experience. Having Behçet’s himself, he understands the challenges and difficulties that Behçet’s can bring, and his insight into the patient experience has driven his desire to improve care and treatment for all patients with Behçet’s in the UK.
Keen to increase awareness of Behçet’s and network with other countries, he started attending EURORDIS (Rare Diseases Europe) meetings and was nominated to be a patient representative. For 6 years he travelled across Europe raising the profile of Behçet’s and highlighting the need for specialised, multi-disciplinary care and treatment. He wanted the experience of Behçet’s to be heard, for people to know what it is, and for Behçet’s to be featured within the European medical field. He saw how powerful these meetings were, with healthcare professionals and patients across Europe meeting together and the importance the patient voice can be in representing the truth of living with chronic ill health. He helped to oversee the Behçet’s patient online site for EURORDIS, where people with Behçet’s across Europe could exchange experiences and connect with each other. As a result of his networking and volunteer work across Europe he set up, alongside Chris Phillips, Behçet’s International.
Richard was also pivotal in supporting the 14th International Conference on Behçet’s Disease in London, where over 300 registrants from around the world attended over two-and-a-half days to share their expertise and knowledge. Alongside the professional conference, a separate Behçet’s Disease Patient Conference was also held, of which Richard could be seen supporting, connecting and signposting patients. He remained committed to supporting the International Society for Behçet’s Disease and in 2014 organised the patient-centred conference for the 16th International Conference on Behçet’s Disease in Paris. In 2016 he was just one of two patients invited to work with the European League Against Rheumatism on the International recommendations for the management of Behçet’s, traveling to Zurich and ensuring that the patient voice was represented.
He was also nominated to be one of four patient representatives for RITA, an organisation which aims to draw together expertise in the diagnosis, management and treatment of rare immunological disorders. Richard again travelled around Europe with RITA to raise awareness and represent the patient profile on Behçet’s. Richard’s position within RITA would not have been possible without Professor Fortune and Professor Moots leading the mission to have Behçet’s recognised by RITA as one of the rare immunological disorders they covered. In 2019 Richard was awarded the EURORDIS Black Pearl Award for Outstanding Efforts as a Volunteer. With all the changes that have occurred with the UK leaving Europe, Richard stepped down as a Volunteer shortly after but his work in Europe has had a tremendous impact on what has been achieved here in the UK.
His volunteer work within Europe was leading him towards supporting the establishment of the Centres of Excellence that we know today. Alongside Jan Mather, Richard was part of the driving force in raising the profile of Behçet’s and the need for patients to access specialist, multi-disciplinary care. Richard was convinced that funding was available for specialist centres to be set up and he was right! Through NHS Commissioning they were able to access funding under Specialised Services and he and Jan held meetings with leading healthcare professionals with a specialist interest in Behçet’s Disease to gain their support.
You may be wondering where this drive for change and experience comes from. When talking to Richard about his work it was of no surprise to then hear that he was a Detective Inspector in CID and set up the first sexual and domestic abuse unit in Wiltshire. He was fully aware that the environment they were utilising was inadequate and unsuitable for victims of abuse and provided a case to set up a new holistic unit. Communicating with various organisations, including the NSPCC and Social Services, they were the first unit to work collaboratively in supporting victims of abuse. Most recently Richard worked tirelessly into raising awareness of the inadequacies and failures within mental health services and is always striving to protect those who are most vulnerable. As Richard says himself, he is always trying to make things better for others. He is described as having a heart of gold and is dedicated to helping others.
Richard stepped down as Trustee in 2020 so that he could spend more time with his family but unsurprisingly his work behind the scenes continues – he still talks about Behçet’s and the impact it has on physical and psychological health and is on the UK Behçet’s Guidelines Development Group who are aiming to produce UK wide guidance on the management, treatment and care of patients with Behçet’s. The online community that he set up with EURORDIS is also still going strong. I know that today he will be chatting to patients, connecting them to others, and signposting them because you, me, us, the patient, is at the heart of all the work Richard has done. He just wants to make things better for us all.
On behalf of Behçet’s UK, all staff from the Centres for Excellence, and the patients you represent, we thank you for all the work you have done over the last 20 years and the commitment you have shown to represent the patient voice and support change, not just in the UK but across Europe, for supporting the Centres for Excellence and dedicating so much of your time to improving care for others.
The Judith Buckle Award 2022 is awarded to Richard West.
Presentation delivered by Behçet’s UK Trustee, Rachael Humphreys