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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.
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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: Debbie Mitton Appointment centre telephone number: Telephone number: 0151 529 2091 020 3594 6088 Telephone number: 0121 5074243 Helpline number: 0151 529 8123 Email address: Email address: [email protected] [email protected] Email address: [email protected] Usual clinic times: Currently on Usual clinic times: Usual clinic times: Currently Tuesdays 9.00 to 15.00, Fridays 8.45 to 13.00 first and third Friday of the month 9.00 to 12.00 Who to contact in an emergency: Who to contact in an emergency: Who to contact in an emergency: Sally Tillet Lead nurse, via telephone number Denise Price Support worker: Jean Christians Support worker: Janine Davies Support worker: Carol Hughes ([email protected]) ([email protected]) ([email protected])
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PATIENTS CENTRES
During this time, I came across an a rare disease and their families and to change through the establishment of organisation here in the UK promoting carers need time off to spend some time support groups. It is also something the the importance and value of activities for in an environment where they can stop Society has been keen to encourage for older people and those with disabilities. thinking about their disease, and where some time, and I have already started Called NAPA (the National Organisation they can meet, and socialise and share looking into suitable areas and venues, for the Provision of Activities), this with, other people facing similar and gathering patient feedback. organisation provided a great way for conditions. This is something I already In closing, I’d like to take this me to gather knowledge and training in have noticed happening in the waiting opportunity to thank the patients, the the UK and to gain support in these lounge in the London Clinic: patients Society and the team at the London uncharted waters. The UK has a very sharing stories with one another, Centre of Excellence, for making me different healthcare service from the US providing support to one another and feel so welcome. I know I still have lots and I had a lot to learn! laughing together. I have been told by a to learn, so please feel free to either ring few patients I have met at clinic that it me or email me with any of your ideas/suggestions. This is a new role and Starting work was the first time they had met another person, face to face, with Behçet’s there are endless possibilities. Initially, I spent the first couple of weeks disease, and this is one aspect I am hoping Jean Christians doing lots of research online as Behçet’s disease was not something I had heard of Obituaries before applying for this post. The It is with great sadness that we report the passing of two of our very active members Society’s website has been a really good in June 2013. resource for me, as I regularly read the Peter Charters, who volunteered on our Helpline from 2008 and who had Behçet’s members’ postings where they share their disease, died of bowel cancer. He had been ill for a long time. Peter was a great experiences and knowledge with one support on our Helpline both to callers and to his fellow volunteers and was always another. I was also very excited to come upbeat and positive despite his own health issues. across another website called the Ruth Page died after being admitted to hospital. Ruth was one of our junior European Organisation for Rare Disease members who had suffered from Behçet’s disease from a young age and was only (EURORDIS), where there is a small 18. Ruth was an active administrator of our Facebook site, and although she had article defining the term “therapeutic been very ill throughout the past year, she provided ongoing support to other recreation” and explaining how members. recreational and leisure activities can Both Peter and Ruth will be missed by the Society, and our thoughts and benefit people living with rare diseases. condolences are with both Peter and Ruth’s families at this sad time. Ultimately, they state, people living with Annual Conference – Saturday 19 October 2013 We’re pleased to announce that the next Annual Conference If you’d like to make a weekend of it (Stratford-upon-Avon, and Annual General Meeting for the Behçet’s Syndrome Leamington Spa and Warwick are all in very close proximity), Society will be held on Saturday 19 October 2013. The venue you could consider one of the local Premier Inns, such as the is the Forest Hotel, Station Road, Dorridge, West Midlands Barn, which is where the Trustees will be staying. B93 8JA (www.forest-hotel.com). All members and their The agenda for the day will be published in the next friends and family are invited to attend. The feedback from the newsletter, but we will be aiming to serve tea/coffee on arrival last conference was overwhelmingly positive with regard to from 10am and start the conference at 10.30am. The day will both the medical presentations and the opportunity to chat to finish at 4.30pm. other people. We are working with the team at the Birmingham Centre of This is a very central location for all our members, with easy Excellence to finalise the programme, which will include travel connections whichever way you prefer to travel. It is only presentations from a psychologist to assist with coming to 15 minutes drive from Birmingham International Airport for our terms with a chronic condition and the chronic pain members in Northern Ireland and Scotland; it is opposite associated with it, a rheumatologist to explain about the Dorridge railway station, which has a direct line to London illness, and other medical presentations to be confirmed in the Marylebone and Birmingham; and it is 5 minutes from the next newsletter. M42, which links with the M5, M40 and M6. The hotel has a I’m confident it will be a good day for both gathering free car park attached, has full disabled access and welcomes information about Behçet’s disease and meeting other people guide dogs. with the condition. So please put the date in your diary, Although the hotel has offered us a very competitive rate for whether you’re new to the illness or have been coming along the conference, the accommodation remains quite expensive. to AGMs for the past 30 years! Jan Mather
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New projects for the Society t the beginning of the year, following our wonderful success in High priority projects obtaining funding for the Centres of A Gç Include poster information in Patient Information Pack Excellence, we asked people for ideas for projects the Society could focus on Gç Undertake a survey on the benefits of visiting the Support Worker as initial going forward. The Centres had address- work towards considering Support Workers for Wales, NI and Scotland ed many of the goals we were aiming to Gç Psychological impact of being a carer for a BD patient achieve, and we wanted to poll opinion ç Friends and family of BD information page on website on future directions for the charity. G ç Fatigue and pain – are they the same in BD as in other chronic illnesses? We put requests for suggestions onto G our website, on our Facebook page and Gç Repeat quality of life survey to work out if there is a difference since the in our last newsletter, and I’m pleased to Centres opened and also if there is a difference between those being seen at say that we received a number of Centres and others proposals from our members. We also Gç Carer journeys for inclusion in the newsletter wrote to our Medical Advisory Panel to ç Email addresses that Trustees/Director can use to send email ask for their suggestions and brought G these together at our last Trustee meeting Gç Smart phone App on BD for GP use together with the attendees’ ideas. Gç Identifying patient speakers to train for medical training day As you’d expect, we had far too many Gç Update the policies and responsibilities of a Trustee to include social media suggestions to take forward this year, but we have prioritised all the ideas and also Gç Update the BSS website categorised them into those we can progress alone and those we’d need to be successful in obtaining funding to Many thanks to all those who took Please also let us know if you think you progress. All the high priority suggestions the time to let us know what projects could help in progressing any of these are listed here, but please rest assured that you’d like us to focus on, and it’s not too ideas. we have kept all your suggestions. late if you’d still like to get in touch. Jan Mather
New trustee Can you help the Society? Judi Scott fter 7 years as Chair of the Behçet’s joined the Society in the early 1990s following Syndrome Society, I’m announcing my the diagnosis of my daughter Joanna with Aintent to step down from the Board of IBehçet’s disease when she was 7. Since then, I have Trustees at the AGM in October. seen the Society flourish to become the hugely supportive organisation that it is today, and I am I’ve enjoyed my time leading the charity thrilled to become a Trustee. immensely, and I’m also incredibly proud of what we’ve achieved over this period – so Currently, I send out welcome packs to new much more than I ever dared hope for. members and information sheets to anyone who However, I now think it’s time for someone requests them following a call to the Helpline. else to provide the vision and drive the Society forward. I will remain the I am a retired teacher who Chair of the Behçet’s Patients Centres, which manages the Centres worked in secondary and of Excellence contract, and will obviously remain a strong supporter of special needs schools. I the Society. now volunteer with the In this edition, we’re welcoming Judi Scott to the Board of Trustees, but National Trust at Canons we’re looking to further strengthen the team from both our members and their Ashby House and Marie contacts. In particular, we’re looking for people with IT skills and legal Curie Cancer Care. I enjoy experience. If you think you could help, please get in touch with our Admin reading, art and crafts, Office and Chris will provide you further details about the responsibilities of walking, gardening and history. becoming a trustee. I am very keen to offer all the help I can to the We look forward to hearing from you. Jan Mather Society. Judi Scott
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FUNDRAISING
trousers or a walk along Hadrian’s Wall while foraging for food, as well as the regulars who do monthly car boot sales Fundraising update and send us the proceeds. If you look at Simple ideas tend to be the best. If e are coming up to the height of our accounts, these donations all add up people are aware that you have mobility the fundraising season, with to a large amount and we could not run problems, they know that a very short Wpeople considering walking, cycling or the charity without them. We have T- sponsored walk would take a similar more extreme ideas to help raise funds shirts to help publicise your event, new effort to achieve as for an able person for the Society. I know of a family wrist bands and other merchandise to running 10K, so there is no need to put member of our founder Judith Buckle sell to help raise funds, so if you have an yourself through hell to get a good who is considering a parachute jump, idea or want to know about climbing response from friends and family. and we have various contacts regarding Kilimanjaro don’t hesitate to contact the the National Abseil Centre in In the last issue, we mentioned the office for advice and support. Walk, Northampton. You don’t have to stretch Horner’s Livery Company whose master cycle, run, jump, hop or just sit – we can as far as white water rafting or climbing has adopted the Society for this year. help you to raise money and help the They have already raised nearly £10,000 Society. to Everest base camp to help. Simple towards researching Behçet’s disease ideas, sponsored knitting, a sponsored Chris Phillips services for children in the UK. We are silence, or a coffee morning or Come very grateful to them and will keep you Dine with Me ideas are all valid. I updated in each newsletter issue suppose we should run a “Behçet’s Got Talent” competition, but we need We still have people undertaking someone called Simon to run it! unusual events, such as a year without Hadrian’s Wall challenge When my girlfriend fell ill and ended up in hospital in February The challenge 2012, I thought that the doctors would get her sorted out and So that is where I got she would be back out walking miles with me around the the idea to walk tracks of Shropshire in no time. But as the weeks turned into Hadrian’s Wall from months, I felt as though she would never get out of hospital. Segedunum in the east Constantly unable to keep food down and looking very blue, to Bowness-on-Solway she had no strength, her oxygen saturation was very low, and on the west coast. As she was turning septic by the minute. We found out later that the walk is only about progression of Behçet’s disease had caused gastroparesis. 86 miles or so, I thought I would add an extra challenge. It After 2 months in hospital she finally came home. But sadly occurred to me that as my girlfriend has gastroparesis caused short of recovered, she was weak and needed lots of care. by Behçet’s disease, she has a lot of difficulty holding food Several more stays in hospital later, she started to get some down. So the challenge should be around food. I decided to strength back. I was very thankful and pleased that she had make it difficult to put food in to my belly and so came about started to get back on her feet, and we started to go out for the idea of foraging the whole route. little walks now and then. I will carry a few things in my rucksack to finish off a meal, Then at the beginning of October 2012, after coming to visit such as chick peas (for vitamins), some flour, rice (for her at home after work, I found her looking a dark grey colour carbohydrate) and spices, a salami or two for a BBQ on one and very weak. She was finding it difficult to speak, with of the nights and a dozen (free range) eggs for a good central chest pain. She had another lengthy stay in hospital, breakfast each morning. I will be looking for food like berries the gastroparesis getting worse. It had got so much worse and roots, leaves and nuts, and munching my way across the that now only intravenous anti-sickness drugs would work, county… oh and of course, fungi. and the difficult decision had to be made to give her a The walk and forage for the Behçet’s Syndrome Society along Hickman line so that she could come home. Hadrian’s Wall will take place between 24 August and 7 Not being a doctor, there was little I could do to help. All I September 2013. If you would like to follow my progress of could offer was to sit there and slowly watch her do her IVs learning as much about wild food as I can, follow my through her Hickman line six times a day and talk about the Facebook page on Hadrians Wall Forage. There is also a day she will be feeling well enough to manage going for a Justgiving page at www.justgiving.com/Justin-Scott for walk together again. anyone wishing to support my challenge. People who follow the site can perhaps learn a little something about wild food I love walking, and walking Hadrian’s Wall is something that I and enjoy the great outdoors with a few new ingredients for have been talking about for years. My girlfriend would have your own table. liked to do the walk with me; we often go out and find wild food and make some tasty meals from it. Justin Scott
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Thanks − CASE HISTORY we had a ball! or the third consecutive year, Ruth Favède has organised a Ladies Only FBall on behalf of the Behçet’s Syndrome My Behçet’s disease Society. The ball started when Ruth celebrated her 40th birthday and wanted to raise money for the charity. She had journey so much fun, as did the ladies who The Society has been collecting case histories (people’s stories) to use attended, that she’s organised it each selectively in the media. To encourage more members to offer theirs and to year since. I’m delighted to say that keep you informed of patient journeys, we intend to include some of these Ruth raised £941 this year, which is a stories in the newsletter. If you would like to include something, please fantastic amount. I’d like to thank Ruth, contact the admin office on 0845 130 7328 or email my sister, for organising this great event [email protected] each year and for inviting me to such a wonderful evening! Jan Mather was diagnosed with Behçet’s disease in me, asked if I had ever had any sore red 2008. Looking back, I had probably lumps on my skin or unexplained joint Ashton-under-Lyne Ihad symptoms since I was a teenager, pain. I was lucky to have found a when I had regular episodes of mouth gynaecologist who had heard of Behçet’s Rotary Club ulcers which never cleared up quickly. disease, although she had never seen it. ’m delighted to After university, I started to have aching She went off to consult a textbook, as she report that the joints with no obvious inflammation or told me, then came back to say she IAshton-under-Lyne explanation. After the birth of my third thought it was Behçet’s disease. I had to Rotary Club has made child in 1999, the mouth ulcers became wait another week for the diagnosis to be a further donation of increasingly persistent and I was referred confirmed by the dermatologist. She did £200 to the Behçet’s to oral medicine. I was tested for aller- have experience of Behçet’s disease and Syndrome Society. This is the second year gies, Crohn’s disease and coeliac disease, was wonderful in explaining things. we’ve received such a generous donation but all tests were negative. Then I started from them. I was invited to present to the In 2009, I started to notice changes in to develop genital ulcers, small at first but group at their awards evening on 20 May my vision and I was diagnosed with painful. These went away, untreated, after and to receive the cheque on behalf of the uveitis. My sight deteriorated suddenly, a week or so. Eventually, I developed one Society. I’d like to thank them again for and I had to start steroids immediately in ulcer that refused to heal and after 3 their continued support. conjunction with immunosuppressants. weeks I was referred to genitourinary Fortunately, my sight stabilised, but I Rotary Clubs exist throughout the medicine. All their tests proved to be was now suffering from painful country and internationally, and they negative, but I started a short course of arthralgia and overwhelming fatigue. describe themselves as “A grass-roots steroids which helped. Although my organisation consisting of business symptoms were treated, no-one could I then worked my way through a professionals and community leaders that offer any explanation of the cause. variety of immunosuppressants, which volunteer time, talent and resources in all had to be stopped either because of order to remedy vital community needs.” toxic reactions or because they didn’t Their website quotes that they have over Diagnosis and treatment work. Eventually, with the help of the 1.2 million members worldwide. Society, I went to see Prof Moots and his In May 2008, I suddenly developed opinion helped to provide a case for me The Ashton Rotary Club have terrible pain in my wrists and fingers. I to start infliximab. informed me that they like to support made an appointment to see my GP the local people involved in charitable work, following week. By Monday, I wasn’t In contrast to many other patients’ and I have been successful in my sure which symptoms to mention first. I stories, I was able to start infliximab application to them because of my now had painful genital and oral quite quickly through my rheuma- family roots in Ashton. They have ulceration along with the pain in my tologist. Funding for biological drugs suggested that our members should hands and wrists. I was sent to gynae- still has to be approved through our local contact their local Rotary Clubs to cology that day, where more tests were Health Trusts, the Scottish equivalent of PCTs. I don’t know whether funding is request funding. If you feel this is done and an appointment made for me to easier to get in Scotland or whether it is something you could get involved in, we see a dermatologist a week later. My because I live in a university city where would be delighted to write the letter on symptoms got worse, and I went back to a lot of expert opinion is centred. your behalf for you to send, so please gynaecology 2 days later. The break- just get in touch. Jan Mather through came when the doctor, new to I started infliximab in January 2012,
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CASE HISTORY ollowing recent training provided by Welfare Benefits and Work regarding PIP (the replacement benefit and my quality of life changed. My eyes there any ologies left that you haven’t F to DLA), we thought we would provide remained stable and finally the arthralgia visited?” There are still questions to be some further information with regard to was under control. The fatigue was also resolved, but I am very lucky to have much less of a problem. I thought my four consultants who are all adopting a the descriptors used for assessment and symptoms were finally under control. very cautious approach to my new the points needed to qualify for care symptoms and who all communicate and/or mobility at the standard or quickly and effectively with each other. enhanced rate. There are only two rates A setback that can be applied for, which are standard and enhanced for both care and Before I started infliximab, around Support mobility. Christmas, I had been vaguely aware of some changes in my sight but they didn’t When I started to write this, I looked Following an initial phone call to seem to persist and my regular eye back at other patients’ journeys. My take details when first applying, you will checks seemed to be fine. However, by experiences have not been harrowing or then be sent a form that will ask about April they had become so persistent that life-threatening. I have not had any your ability to carry out certain tasks. I was scared to drive as my spatial hospital admissions because of Behçet’s There are 12 activity tasks in total − 10 perception seemed odd. Cars appeared disease. Admittedly, my journey has for the care element and two for mobility been intensely frustrating at times and to be approaching so closely that − and your answers will be assessed and my new symptoms have caused a lot of collision seemed inevitable. As my scored relating to the descriptor that best anxiety, but I have been lucky to have ophthalmologist couldn’t offer any describes your ability (see below). obvious explanation, she sent me for an had wonderful support from my current MRI just to be cautious. consultants and my GP. Like many You will also need to write further others, I have had support from friends information in the boxes provided to Following the results of the MRI, I and my family. My family has had to explain how your condition affects your had to stop infliximab until the reasons learn to live with the restrictions my ability to carry out the task and how for the changes seen on the scan could be illness has placed on them. Mum cannot, often, aids used if applicable, etc. (Try to explained. The doctors were concerned at present, be their on-call taxi service. be as detailed as possible and provide as to whether the infliximab had caused Their support has been invaluable. medical or supportive evidence where these changes, whether they could be attributed to another pre-existing Finally, I would like to thank the possible.) condition or whether they could be the Behçet’s Syndrome Society for all their List of activities start of neuro-Behçet’s. After an anxious help, support and friendship. I will never 3 months, I restarted the infliximab. I am forget the relief of being introduced to assessed for care currently seeing a neuro-ophthalmologist other people with my disease and their (daily living) and mobility subsequent support, however different and a neurologist, as well as my regular Daily living activities: all our individual journeys have been. ophthalmologist. My youngest daughter Gçç Preparing food summed it up beautifully: “Mum, are Hazel McLachlan Gç Taking nutrition ç Royal College of Ophthalmologists Annual Congress G Managing therapy or monitoring a health condition On 22 May, I was invited to present at the Royal College of Ophthalmologists’ ç Washing and bathing Annual Congress in Liverpool. Moorfields Eye Hospital had put together a session G on Behçet’s disease, including a patient’s perspective which I presented; the Gç Managing toilet needs or Nationally Commissioned Centres presented by Prof Phil Murray from the incontinence Birmingham Centre; manifestations of Behçet’s disease in the eyes by Prof Miles Gç Dressing and undressing Stanford from Guys and St Thomas’s; other manifestations associated with ç Behçet’s disease presented by Prof Anne Morgan, St James University Hospital in G Communicating verbally Leeds; and finally the treatment of Behçet’s disease presented by Prof Rob Moots. Gç Reading and understanding I have given my presentation on Behçet’s disease from both a patient’s and a signs, symbols and words Society perspective on several occasions before, but the venue at the ACC Gç Engaging with other people face Liverpool (Arena and Conference Centre) was amazing. We were in the main to face lecture theatre, which held around 500 people and was quite daunting. The venue ç Making budgeting decisions wasn’t full as we were on first thing in the morning, but there were plenty of G people in the audience. It was a great opportunity to spread the word and raise Mobility activities: awareness of both Behçet’s disease and the new Centres. The feedback we ç Planning and following journeys received was very positive, and I thank all those involved for choosing to discuss G Behçet’s disease in such a powerful forum and also for my invitation. Jan Mather Gç Moving around
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Personal Independence Payment (PIP) update To get standard rate for both care and Examples of activity descriptors mobility, you need to score a minimum Moving around of 8 points. To get the enhanced rate for Taking nutrition both care and mobility, you need to score GA Can take nutrition unaided (0 points) GA Can stand and then move 12 points. GB Needs (2 points): more than 200 metres, either i. to use an aid or appliance to be able to aided or unaided (0 points) When answering the questions, tick take nutrition; B Can stand and then move the box that best describes your ability to “The outlook for eye diseaseG in or more than 50 metres but no carry out the activity most of the time ii. supervisionBehçet’s to be able disease to take is nutrition; improving. more than 200 metres, (more than 50%); even if you think more or Approximately 80% of patientseither aided or unaided than one of the descriptors apply to you iii. assistance to be able to cut up food (4 points) and you tick more than one box, you will C Needs a therapeuticwill retain source good to be vision able to in at G C Can stand and then move only receive one set of points per G take nutrition (2 points)least one eye.” unaided more than activity on assessment. Therefore, you GD Needs prompting to be able to take 20 metres but no more should use this box to explain in detail nutrition (4 points) than 50 metres (8 points) how your condition affects your ability E Needs assistance to be able to manage a to carry out each task and relate it to the G GD Can stand and then move therapeutic source to take nutrition descriptors where possible. using an aid or appliance (6 points) more than 20 metres but no Most people will also be seen for a GF Cannot convey food and drink to their more than 50 metres face-to-face assessment in which you mouth and needs another person to do so (10 points) can explain this further. (10 points) GE Can stand and then move more than 1 metre but no For example, a claimant with severe mouth more than 20 metres How to view descriptors ulcers may physically be able to prepare food either aided or unaided For a descriptor to apply to a claimant, and feed him/herself, but due to severe pain (12 points) and discomfort caused by eating and drinking F Cannot, either aided or the claimant must be able to reliably at these times may need prompting from G complete the activity as described in the another person to carry out the task (could be unaided, stand or move descriptor. Reliably means whether they assessed at 4 points). more than 1 metre (12 points) can do so: ç G Safely – in a manner unlikely to 12-month period. The following rules ability over a longer period of time helps cause harm to themselves or to apply: to iron out fluctuations and presents a another person, either during or ç more coherent picture of disabling after completion of the activity; G If one descriptor in an activity is ç effects. The descriptor choice should be G To an acceptable standard; likely to apply on more than 50% of ç based on consideration over a 12-month G the days in the 12-month period, Repeatedly – as often as is period. reasonably required; and then that descriptor should be ç I hope this information gives a G In a reasonable time period – no chosen. Gç clearer picture as to what to expect with more than twice as long as the If more than one descriptor in an regard to the application and assessment maximum period that a non-disabled activity is likely to apply on more process. person would normally take to than 50% of the days in the period, complete that activity. then the descriptor chosen should be Janine Davies the one which is the highest scoring. Support Worker, Birmingham For example, if D applies on 100% Rules of days and E on 70% of days, E is If you want to see all the directives A scoring descriptor can apply to selected. and examples you can find them at claimants in an activity in which their The impact of most health conditions and www.dwp.gov.uk/publications/specialist impairment(s) affects their ability to disabilities can fluctuate, and Behçet’s -guides/pip-toolkit/about-pip/ complete an activity, at some stage of the disease would fit into this category. It is under Assessment criteria published . day, on more than 50% of days in the suggested therefore that taking a view of April 2013
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RARE DISEASE DAY Reception in Wales was diagnosed when I was 23 years old. border in England are so different from I was living in Manchester at the time those on offer in Wales is a massive bone and was cared for by an immunologist of contention, and a little ironic con- who specialised in Behçet’s disease. I sidering the theme for Rare Disease Day was seen on a regular basis, and if I had is “Rare Disorders without Borders”. a problem I only had to page the The Welsh Assembly Government opted specialist and she would ring me back. out of developing a Centre for Excell- They set up a monthly multidisciplinary ence, as they felt they were already aving Behçet’s disease can feel Behçet’s disease clinic which I also providing adequate services for Behçet’s isolating and frustrating. Explain- attended. Moving to Cardiff meant disease in Wales. I do wonder who they Hing the disease, what it is and how it leaving this specialist service behind. I consulted when they came to this affects you, is difficult, especially as it is haven’t seen a single Behçet’s disease decision. It certainly wasn’t the people a rare disease that no one you know has specialist in Cardiff, or anywhere in with Behçet’s disease living in Wales. ever heard of. The object of Rare Wales, since moving here in 2006. When Disease Day is to break down these my husband and I discussed the prospect barriers, to raise awareness, and to of starting a family, I was referred to a An opportunity campaign to politicians. Jacklyn Doidge specialist in London as there were no The Chief Medical Officer, Dr Ruth and I were invited by the Society to obstetricians in Wales who specialised in Hussey OBE, was at the reception, and attend a Rare Disease Day Reception at pregnancy in Behçet’s disease. we sought her out to discuss the lack of the Senedd, the home of the Welsh Jacklyn, who was diagnosed with specialist care and the frustration Assembly Government, on 20 February. Behçet’s disease 12 years ago, was cared Jacklyn felt when her funding ceased We met up beforehand for a quick for in Bristol by a specialist recom- and her specialist care was removed. We coffee, as we had never met before. We mended by the Society for 8 years. She explained that we were prepared to had the opportunity to circulate before had an excellent relationship with him, travel to receive specialist care. We also the meeting started and chat to different and trusted his decisions. Suddenly, and spoke to her, as well as representatives people with other rare diseases. unexpectedly, the funding for her to go from Rare Disease UK and Genetic to Bristol was taken away, and she was Alliance UK, about the Centres of The meeting was opened by Mr told she had to attend the University Excellence in England and how we are Mark Drakeford AM. The first speaker, Hospital of Wales. Jacklyn has had to unable to access these services, because Mr Alastair Kent OBE, Chair of Rare start from scratch with her new we live in Wales and it would cost the Disease UK, started by stating that NHS consultant and is working her way back NHS Wales financially to refer us. Wales can, and does, deliver world class up the medication ladder. She went services in healthcare. Unfortunately, Rare Disease Day gave us the through the process of being referred for one in four patients with a rare disease opportunity to have a voice and to feel anti-TNF treatment but was told she did will have to visit 20 or more different that we were being listened to. We not meet the criteria; no further explan- doctors before a diagnosis is made. Once understand that we cannot change ation or course of treatment was offered. a diagnosis has been achieved, 60% of services for Behçet’s disease patients She has lost confidence in the service patients have to visit at least three overnight, but, hopefully, with an and does not feel valued or listened to. different doctors to manage their ongoing campaign from patients living condition. This can result in poor So we both know what it is to receive in Wales, and the support of the Society, communication and a lack of overall specialist Behçet’s disease care in Eng- we can prove that we deserve specialist responsibility for the patient, which can land, to feel valued, understood and services just as much as those living be frustrating and delay the start of supported. We are now both under the across the border. If you live in Wales treatment. same rheumatologist, at the same hosp- and want to campaign for a Centre of ital. I have been on infliximab since 2007, Excellence here, or simply wish to whereas Jacklyn is on several immuno- receive better specialist care, please Living with Behçet’s disease suppressant medications. Neither of us is contact your local AM, England appears in Wales receiving equal services to our English to be constantly improving its services neighbours, nor are we receiving Jacklyn and I both have Behçet’s disease whereas Wales has come to a standstill. specialist care. and we both live in Wales − Jacklyn in We all deserve to be treated equally. Llanrumney and myself in Caerphilly. I The fact that services across the Rachael Humphreys
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RARE DISEASE DAY Reception in Scotland attended the Rare Disease UK Re- concerns and problems that they face. Scotland, but also recognised that the ception at the Scottish Parliament on The conclusion was that a need exists for increasing health problems of the Scottish I26 February, along with Hazel a strategy for rare diseases in Scotland to population and the impact of longevity McLachlan, another member of the ensure that patients with rare conditions were taking its toll on funding the Health Scottish group. Rare Disease UK is the can access equitable, high quality care, Service in Scotland. If the Scottish national alliance for people with rare information and support in a timely Government is to honour its pledge, then diseases and their carers. The aim of Rare manner while also making more it needs to act on these recommendations Disease Day was to raise awareness of efficient use of NHS resources. The and make it easier for patients with rare rare diseases as they have generally not report can be downloaded at www.rare diseases such as Behçet’s disease to been considered to be a health problem in disease.org.uk/documents/Research%20 access medication and resources that are the UK. This is partly due to the mistaken Report/rduk-scotland-survey-report.pdf. available elsewhere in the UK so that “rare diseases without borders” becomes belief that rare diseases affect a small Alex Neill asserted that the Scottish a reality. Catherine O’Hara number of people. In fact, rare diseases Government was committed to affect 3.5 million people across the UK. supporting those with rare diseases in Speakers presenting at the reception, included Alex Neill, the Scottish Sec- Rare Disease Day Stall retary for Health and Well-being; Birmingham Centre of Excellence Alastair Kent OBE, Chair of Rare On Rare Disease Day, we decided to try to do lucky Disease UK; and several guest speakers and raise some money for the Society dips on future who outlined their own stories of coping and raise awareness of Behçet’s disease stalls. All the gifts were at the same time. We sold Easter gifts donated, which meant with, or caring for someone with, a rare and books along with cakepops and pure profit. Thank you disease. These highlighted some of the cupcakes, made by Lynn’s daughter-in- to all those people who difficulties that people have faced in law Jenny, who refused any payment for donated. Thanks also obtaining a diagnosis. Another issue them. On our first attempt at fundraising, to Chris, who joined us raised was lack of coordination of care, we raised £85 and had sold out of cakes on this occasion. by lunch time. as treatment can be delivered by By 12.30pm we had again run different specialists in multiple loc- Lots of people, both staff and patients, out of cakes, so next time we will have ations. There is no doubt that this strikes were interested in knowing about even more! I have already spoken to Behçet’s disease, which we were Jenny to say that we will be keeping her a chord with those of us with Behçet’s pleased about. We made it into the busy, and she has replied saying that disease. Another important issue is that local papers (Birmingham Mail), again she is happy to be of help and will people in Scotland are experiencing raising awareness. continue to bake for us for as long as difficulties in accessing specific medi- we want. So a big thank you to you, We have decided to try and do a stall Jenny! cines for rare diseases, as this may not be once a month, now knowing that we funded by individual health boards. This need more items for sale. We are also We also held a raffle of an Easter cake, scenario is also familiar to several of us going to try a lucky dip and a raffle to also made by Jenny, which was won by with Behçet’s disease in Scotland. see if these are popular. Any other Marion Butler, the admin manager at suggestions or donations for our raffle the hospital, who then kindly donated it would be very welcome, as we are new to the nurses in the Emergency Eye Dept. to this and would like to try various At the end of our day we had cleared Living with a rare disease different things so that people don’t get in Scotland £160 profit, which was amazing. We bored with our stall. The Society will were there for 5½ hours in total, so we pass on any suggestions to one of us. A further aim of Rare Disease Day was are really happy with our efforts. the launch of a publication by Rare March 25th We think we may have hit upon a good Disease UK entitled Experiences of Rare At our second fundraising event we set fundraising idea and will continue to Diseases: Patients and Families in up at 9am, ready to sell cakes, books hold stalls for as long as we possibly can. Maybe you could follow our lead, Scotland, which outlines the results of a and Easter gifts again. This time we also get together with some friends (ask survey of patients and families living had a lucky dip, with prizes of cuddly toys, wine and special little cupcakes, permission from the medical team) and with rare diseases. The purpose was to made in their own little cups and set up a stall at the hospital you attend? find out more about the experiences of saucers, which were really cute. This Lynn Barnes, Anisha Zamin people in Scotland living with a rare idea proved popular, so we will continue and Janine Davies disease and to identify some of the
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New website for BSS hose of you who regularly Each of the support workers is visit our website at going to blog about their work each Twww.behcets.org.uk will have seen month, and support groups will the new look that has recently been hopefully have a higher profile. We launched. For those of you who are able to add and remove pages haven’t been recently, I encourage much more easily than in the past, you to do so. Not only is the site and work on the fundraising section easier to use, but we have also will also support people under- incorporated direct links to the new taking events on our behalf. Please Centres of Excellence in London, send us your ideas or updates. We Liverpool and Birmingham. All of get lovely comments from patients the factsheets have been updated all around the world saying how and put into a uniform format, and helpful the site is. We hope that our the home page incorporates news members feel that is the case too, items that are updated regularly. So There are masses of pages of and that this new format will mean that don’t just visit once – check regularly to information, and the new layout you visit more often and help us to make see what information is being discussed. (designed by STW) should be quicker to it “the place” to check information on We would also like to incorporate your access and more easily viewed. For Behçet’s disease. ideas and information, so don’t hesitate friends and family, the Join now and Chris Phillips to contact the office to discuss them. Donate buttons might be of interest.
Support group update art of the National Commissioning social calendar, meeting for drinks or a office for details or to discuss an area not remit is to encourage more support meal and having some fun; others may covered. We have guidelines for running Pgroups around the country, and to this want a medical talk or a talk on alternative groups and experienced members who end we have new groups planned for therapy. We are also conscious of catering can help. Those who attend meetings Leicester, Gloucester, London and South for the carers, an often forgotten group (however infrequently) always say they Wales. There is also talk of a new whose needs differ from those of patients help, even if it is just a chat with someone Liverpool group to cover a larger area. but who are also important. who understands or a discussion on These groups may be started by the We already have groups up and therapy or ideas for coping with pain. The support workers, but they belong to the running in Scotland, Birmingham, East new centres are a good place to join a patients and carers. So while we may get Anglia and Surrey, as well as the longest group, and we can help to start one them off the ground with a first meeting, running group in Liverpool. On the list are wherever there are sufficient members, so it is important that the members have a also Devon and Portsmouth and a small do not hesitate to contact the office for say in where they meet, how often and group in Northern Ireland. The contact information about any of the above or to what the agenda is. Groups may follow a emails are below, or you can contact the offer your services. Chris Phillips Support group contacts These are the contact details for the various local support groups that have been, or are in the process of being, set up. Please get in touch if you are interested in becoming involved, or contact the office for more details. If you don’t have one in your area and would like to help, please contact the office and we will see what support we can offer. Area Email contact Area Email contact Liverpool area [email protected] Cambridge [email protected] Portsmouth area [email protected] Devon [email protected] London [email protected] Northern Ireland [email protected] Birmingham [email protected] Surrey Nth Hants [email protected] Scotland [email protected]
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material contained in this or attached document/s. You should seek the advice of a medical professional regarding your particular situation. June 2013 Designed, laid out and printed by INQ Design. Call Mike on 020 7737 5775
– 12 Behçet’s Syndrome Society Newsletter Issue No 24 – Summer 2013