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Behçet's 19/6/13 11:30 Page 1 Behc?et's - Spring 13 12pp.qxd:Behçet's 19/6/13 11:30 Page 1 Summer 2013 NEWSLETTER No 24 Summer 2013 The Behçet’s Syndrome Society – caring for those with a rare, complex, and lifelong disease The Society was founded in 1983 by Judith Buckle and is a Registered Charity No. 326679. The main aims and objectives of the Society are:- G provision of information G promotion of research G relief of distress/poverty The Society is a member of National Voices (formerly known as the Long- Term Conditions Alliance or LTCA), Rare Disease UK, EURODIS (European patients’ organisation for rare diseases), the Behçet’s Forum and the International Society for Behçet’s Disease (ISBD). Professor Robert Moots and Jan Mather at the Liverpool Centre CONTACT DETAILS Registered Office: 15 The Daedings, Deddington, Oxfordshire OX15 0RT Birmingham and Administration Office: 8 Abbey Gardens, Evesham, Liverpool Patients Centres Worcester WR11 4SP Tel: 0845 130 7328 E-Mail: [email protected] declared open! Web Site: www.behcets.org.uk HELPLINE 0845 130 7329 TRUSTEES Chair Jan Mather Vice-Chair Kathryn Proudlock Hon. Secretary Alison Pemberton Hon. Treasurer Alan Lane Alan Booth John Henson Norah Martyn Aaron McPeake Kirsty Millard Cutting of the Birmingham ribbon: (from left) Lady Mayoress of Birmingham Mrs Kathleen Lines, Amanda Page Lord Mayor of Birmingham Councillor John Lines, Professor Carl Chinn MBE, Jan Mather, Chair of the Behçet’s Syndrome Society, and Dr Deva Situnayake, clinical lead Judi Scott – 1 Behçet’s Syndrome Society Newsletter Issue No 24 – Summer 2013 Behc?et's - Spring 13 12pp.qxd:Behçet's 19/6/13 11:31 Page 2 PATIENTS CENTRES Birmingham opening Local TV and radio personality Professor Carl Chinn MBE and the Lord Mayor of Birmingham were on hand on 16 May to officially open the new centre at the City Hospital Birmingham. Carl, who is Professor of Birmingham Community History at the University of Birmingham and is the author of scores of books and articles on the social history of the West Midlands, cut the ribbon at the Birmingham Behçet’s Syndrome Centre of Excellence, along Patients at the Centre with Cllr John Lines, Lord Mayor Liverpool opening of Birmingham. On 28 February, the new centre at Aintree Hospital in Carl and the Mayor Liverpool was opened. Patients, clinicians and local GPs Prof Murray, Chris Phillips and were joined by were all invited to celebrate this major step forward for the Janine Davies Chris Phillips, treatment of patients with Behçet’s disease. Director of the Behçet’s Syndrome Society, and Dr Chris Deighton, President of the British Society for Rheumatology, The team at the centre is as follows: as well as patients and staff from the centre. G Professor Robert Moots, Professor of Rheumatology Dr Deva Situnayake, clinical lead at the centre, explained: “In G Dr Anu Jacob, Consultant Neurologist Western Europe, Behçet’s syndrome is very rare, with only an Mr Ahmed Kamal, Consultant Ophthalmic Surgeon estimated 500 people in the UK having a diagnosis. However, G while the syndrome is currently incurable, it doesn’t mean it is G Mr John Kirwan, Consultant Gynaecologist untreatable, and G Denise Price, Clinical Nurse Specialist we were delighted Dr Bijay Rajlawat, Consultant in Oral Medicine to become host of G one of the national G Carol Hughes, Support Worker centres Professor Moots opened the centre with Jan Mather and specialising in the said that he was delighted to welcome all the patients and treatment of this professionals to this open day. disease. The multidisciplinary clinic has now been working since “We were thrilled to Admin staff from the Centre September 2012, and while we have, as may be expected, welcome Dr Carl had our teething problems, we are still working hard to Chinn and the Lord Mayor to officially open the centre. The ensure that the service we offer to our patients is the best. opening of the centre will make such a positive difference to We have appointed our new Clinical Psychologist, Sophie patients’ lives from across the West Midlands and beyond, as Campbell, and she is due to start in March. We are people with Behçet’s syndrome can now come to the centre delighted to welcome Carol Hughes, our Support Worker, and be seen by consultants from different specialties on the to the team. She started work in January and, with her same day, instead of having to attend different appointments.” help, we hope to get plenty of patient feedback to enable our service to grow with patients at the forefront. Carol attends our clinics, currently held on a Tuesday morning, Radio BBC WM live broadcast! each week and is available to help, advise and take any Before the opening of the Birmingham Centre, comments, so please feel free to approach her when you Sarah Millard at City Hospital Birmingham come to the clinic. arranged for Dr Deva Situnayake, Debbie Our database, in the capable hands of Damian Grimes, is Mitton, Jan Mather and Anisha Shaikh-Zaman taking shape quickly. We are currently populating this with (who is a patient at Birmingham) to be all the relevant information so that clinicians can have “at interviewed live on BBC Radio WM on Prof Carl a glance” clinical information during consultations as well Chinn’s show. Unfortunately, Anisha was unwell as being able to interrogate the database in the future to and was unable to attend. look for trends, successful outcomes and treatments, and Prof Carl Chinn is a local celebrity in Birmingham; he research opportunities and to identify potential problems. supports anything that promotes the city and is very The three National Centres have worked together to interested in both the illness and the Centre. Although it was produce a new website, and this can be accessed direct a live interview, Carl put everyone at their ease and kept them from the BSS website. This is just part of the expanding relaxed throughout the broadcast. services for patients with Behçet’s disease, and we look We are seeking permission to load the broadcast onto our forward to updating members about any changes in future new website and will let you know when it becomes available. issues of the newsletter. – 2 Behçet’s Syndrome Society Newsletter Issue No 24 – Summer 2013 Behc?et's - Spring 13 12pp.qxd:Behçet's 19/6/13 11:31 Page 3 PATIENTS CENTRES London Support Worker ello everyone, I’m Jean Christians those attending clinic from very far and I have recently been appointed away, and I want to help patients to Hby the Behçet’s Syndrome Society as access this and also receive travel Health Care Support Worker, based at reimbursement as permitted. I will work the London Centre of Excellence. I am closely with the clinicians on the team, the third and final support worker to be to ensure that patients have access to appointed. I began my post in March and information regarding occupational have, so far, attended two clinics at the therapy aids and have access to support centre where I have been warmly networks, whether by telephone, online welcomed by the staff and patients. or face to face. Although my colleagues, Janine in Birmingham and Carol in Liverpool, are more established in their roles, it is still Previous experience relatively new to all of us, so we will be I don’t want to give my age away, but working together closely, sharing in- nearly 20 years ago, I graduated from formation and building on one another’s strengths and experiences to provide the New York University with a master’s best possible service for patients. degree in therapeutic recreation and leisure studies, and I have spent most of My role as support worker is to this time working as an “Activities ensure that the non-medical areas of Coordinator” in various settings such as patient care are met both in and outside residential, acute and day centres. I am has been to help them make the most of of the clinic. I will be attending the clinic experienced in running both individual their lives through this holistic approach. days in London, and will liaise between and group activities and leisure edu- patients and clinicians if and when I only worked for 7 years in the US cation, and have also facilitated family needed. I will ensure that patients are before relocating to the UK. It was very and carers support groups over the years. aware of what is available from the state difficult coming to a new country and benefit system and will assist with In the past, this work has generally establishing myself in a relatively claims/appeals if required. I would like been seen as a luxury, not a necessity. unknown field. Back then, no one even to remind you that the Royal London However, for someone who is living with knew what I was talking about when I Hospital can provide accommodation for a potentially limiting condition, my aim used the words “therapeutic recreation”. Contact details for Behçet’s Centres London Birmingham Liverpool Address: Behçet’s Syndrome Centre of Address: Behçet’s Syndrome Centre Address: Behçet’s Syndrome Centre of Excellence, GP Out of Hours, Ground Floor, of Excellence, Sandwell and West Excellence, Aintree Rehabilitation Day North Tower,The Royal London Hospital, Birmingham Hospitals Trust, Centre, University Hospital Aintree, Whitechapel Road, London E1 1BB Birmingham Midland Eye Centre, Lower Lane, Liverpool L9 7AL Lead consultant: Prof Farida Fortune Dudley Road, Birmingham B18 7QH Lead consultant: Clinical nurse specialist: Sally Tillet Prof Robert Moots Lead consultant: Dr Deva Situnayake Clinic telephone number: 020 3594 6087 Lead nurse: Denise Price Lead nurse:
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