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NEWSLETTER No 25

Behçet’s Syndrome Society Newsletter – Issue No 25 – Autumn 2013 1

The Behçet’s Syndrome Society –caring for those with a rare, complex,

and lifelong disease

The Society was founded in 1983 byJudith Buckle and is a RegisteredCharity No. 326679.The main aims and objectives of theSociety are:-� provision of information� promotion of research� relief of distress/povertyThe Society is a member of NationalVoices (formerly known as the Long-Term Conditions Alliance or LTCA),Rare Disease UK, EURODIS (Europeanpatients’ organisation for rare diseases),the Behçet’s Forum and the InternationalSociety for Behçet’s Disease (ISBD).

CONTACT DETAILSRegistered Office:15 The Daedings, Deddington,Oxfordshire OX15 0RTAdministration Office:8 Abbey Gardens, Evesham,Worcester WR11 4SPTel: 0845 130 7328E-Mail: [email protected] Site: www.behcets.org.uk

HELPLINE

0845 130 7329TRUSTEES

Chair Jan MatherVice-Chair Kathryn ProudlockHon. Secretary Alison PembertonHon. Treasurer Alan Lane

Alan BoothJohn HensonNorah MartynAaron McPeakeKirsty MillardAmanda PageJudi Scott

Autumn 2013 Autumn 2013

New BSS promotionalitems available

Over the past couple of years, wehave been increasing the range of

items promoting the Society. We areproud that these are all high qualitygoods, and any profit from the sale ofthese items goes to the Society funds.We have two new items that we have

recently added to our range – pens andtrolley token key rings – and we havealso re-ordered stocks of our long-standing merchandise.

PensThese are stylish ballpoint pens with theSociety logo on the side. They write withblack ink and are an ideal opportunity to

advertise your Society. We are offeringthem for just £1 each, plus 90p postage.You can order up to ten pens for £1.20p&p.

Trolley token key ringIn addition to supporting the Society,these are useful substitutes for the £1coins required for some supermarketshopping trolleys. They display ourcircular logo, and we are offering themfor just £2.50 each, plus 90p postage.You can order up to ten key rings for£1.20 p&p.

WristbandsThese are improved in quality from theprevious supplier and are red, durablewristbands displaying Behçet’s DiseaseAwareness. They cost just £2 each, withpostage just 99p for up to 10 bands.

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Behc?et's - Autumn 13 12pp.qxd:Behçet's 2/9/13 10:17

Behçet’s Syndrome Society Newsletter – Issue No 25 – Autumn 20132

Cotton shopping bagsOur bags for life have been very popular,as they are reusable and strong as wellas being stylish and supporting theenvironment. These have remained atjust £4 each plus 90p p&p.

Patient Information Packs and new medical factsheets

T-shirtsOur cotton T-shirts are printed on bothsides, with the back displaying our strapline of “Caring for those with a rare,complex and lifelong disease”. These areavailable in several sizes from XSthrough to XXXL, so we can cater foreveryone. They are easy to wear and towash too. They are £10each plus £1.20 p&p.Please support your

Society by buyinggoods, telling yourfriends and family aboutthem, and maybe evenstarting to get ready forChristmas with a fewstocking fillers.All of the above items are available

from our Admin Office. Please makecheques payable to Behçet’s SyndromeSociety and post to 8 Abbey Gardens,Evesham, Worcester WR11 4SP. They

Since the establishment of the Centres of Excellence, wehave been working with our Medical Advisory Panel and othermedical professionals to update our medial factsheets. Thesefactsheets have been loaded onto our website and areavailable to download.

The new factsheets cover the following topics and how theyrelate to Behçet’s disease:

� Overview of the condition

� Oral ulcers

� Eyes

� Skin

� Joints

� Kidneys

� Heart

� Pregnancy

� Children

� Blood vessels

� Intestines

� Neurology

� Treatment guides

� Patient guide written by patients

We find they are very useful for discussion with your GP andalso with your friends and family to explain Behçet’s disease.

For those of you who attend one of our Centres ofExcellence, we will also be putting all these medicalfactsheets into a Patient Information Pack about Behçet’s

syndrome. We knowthat when you havebeen into one of themultidisciplinaryclinics, you hear agreat deal ofinformation and needa reminder aboutwhat has beendiscussed. Alsoincluded in thesepacks will be:

� A sheet withspecificinformation abouthow to contacteither theBirmingham, Liverpool or London Centre

� A summary of the results of the questionnaire the Societyundertook in 2009

� A Gift Aid form

� A notepad to record what has been discussed and howyou’ve been feeling between visits

� A Society leaflet

The Support Worker in the clinic will make these available topatients when they become available in the autumn.

We thank all the authors of our factsheets for their continuedsupport.

will also be avail-able to buy atour AGM, so you can avoid the

p&p costs.For queries relating to any of

these products, please [email protected]

or call 0845 130 7328.

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BSS 2013 Conferenceand AGM

All of the trustees are looking forward to welcoming you to our Annual Conference onSaturday 19 October 2013 at the Forest Hotel, 25 Station Approach, Dorridge,

Solihull, West Midlands B93 8JA.

We hope you can join us. If at all possible, please let us know via the office if you will bejoining us so that we can cater for the correct numbers.

Email [email protected] or telephone 0845 130 7328.

Whether you have been a member for years or have just been diagnosed, we are sure you will find the conferenceinformative. It is also a great opportunity to meet other Behçet’s disease patients and share your experiences. Weare also hoping that a number of our support groups will be represented, so you can get in touch and maybe join

one that is local to you.

As we now have the Centres of Excellence, we are using some of the expertise from these clinics to support ourconference and have an excellent programme for you.

During the afternoon, we will be reintroducing the popular session for carers and/or supporters of Behçet’sdisease patients to share their experiences and ask questions away from the main conference. This is theequivalent of our support groups for non-Behçet’s disease patients, and anyone you bring along with you is verywelcome to join this session.

Programme10:00 Refreshments and sale of Christmas cards, T-shirts, bags,

wristbands, pens, key rings and raffle tickets

10:30 Annual General Meeting essentials, including financial updates

11:00 Director’s report

11:15 Report from the Chair

11:30 Update on the Centres of Excellence

12:00 Managing a long-term conditionSophie Campbell, Clinical Psychologist, Liverpool Centre

12:30 Lunch – your donations towards the cost of lunch would begratefully received

13:15 Overview of Behçet’s diseaseDr Deva Situnayake, Rheumatologist and Clinical Lead forBirmingham

14:00 Top tips for mouth hygiene and ulcersDr John Hamburger, Oral Specialist, Birmingham Centre

14:45 Refreshment break

15:00 Behçet’s disease and the eyesProf Phil Murray, Ophthalmologist, Birmingham Centre

15:45 Medical Panel question and answer session – please bringquestions with you or let us know if you have questions but don’tfeel able to ask them

16:30 Close

Travel to Forest Hotel,DorridgeBy train:Dorridge train station is opposite

the Forest Hotel. It is on the

Chilterns line, which runs a regular

service from Birmingham and

London. It is accessible for those

with mobility issues.

By bus:The S2 and S3 service runs

regularly from Solihull, and Solihull

itself is linked with regular bus

services from both Birmingham and

Birmingham International.

By car:Dorridge is just a few minutes’ drive

from the M42. From the South, exit

at Junction 4; from the North, exit

at Junction 5. The postcode for

those with satnav is B93 8JA.



PATIENTS CENTRES

Since beginning my postas London Support

Worker in March, I havehad the honour ofworking alongsidesome fantastic teammembers in theclinic and with theBehçet’s SyndromeSociety. I have foundit to be such a caringand supportive commun-ity, and I have felt welcomedfrom the very first day.I have also been meeting and

working with some lovely patients fromthe clinic and from the Society. I reallyenjoy the clinic days, listening andwatching the patients, family membersand/or carers chatting in the coffee

London: benefits adviceroom. They share stories, both

good and bad. There aresometimes tears, butmostly lots of laughterand smiles.

I’ve been doing alot of benefits work,helping patients toreceive the benefitsthat they are entitled to,

through both applicationand appeal. It’s a great

feeling when they are approved.When things are proving difficult, Idon’t give up easily and will try my bestto find an alternative. As the other twoBSS Support Workers are slightly moreestablished in their roles, I am alwaysasking them for advice and support, asso much of this is new to me. The

London Clinic is proving to be a lotbusier than anticipated, but I amenjoying the challenge.We have so many exciting things on

the horizon, such as the continuation ofthe London Support Group, which wasreally well received. We are hoping tobring in guest speakers and run itquarterly, with a Christmas party inDecember. We are in discussion withmembers to find a Patient Co-ordinatorto help us liaise with the patients.There is also the establishment of a

therapeutic group, led by Dr SteveHiggins, our Psychologist, hopefully tobegin in the NewYear. The focus for thisgroup will be pain management andmindfulness.

Jean Christians

The manager and lead nurse at theBirmingham Behçet's Syndrome

Centre of Excellence got more than shebargained for at the recent national studyday – as she walked away with the keysto a luxury supercar!Sadly, for Debbie Mitton the

£100,000 Audi R8 Spyder is only hersfor the day.The Birmingham Centre hosted a

“Behçet’s in a Day” study day on 10July, with doctors, nurses, dentists andother clinicians from all over the UKconverging on the City Hospital site toattend the event. The study day coveredtopics as diverse as oral, dermatologicaland neurological manifestations ofBehçet’s syndrome; research; and carepathways. BSS Chair Jan Mather gaveher own view of the patient journey.To coincide with the study day, the

local Behçet’s Syndrome Societysupport group, which supports peoplefrom across the Midlands, raffled tickets

Birmingham: Behçet’s study day

to raise funds. The star prize was 24hours with the stunning Audiconvertible. Altogether, the raffle raised£170.Centre Manager Debbie was amazed

when lead clinician Dr Deva Situnayakedrew her winning ticket.Anisha Zaman, who is the group’s

co-ordinator, said: “For the price of a

raffle ticket, people had the chance tojoin the ranks of footballers, tycoons andA-listers in getting an Audi R8 Spyderfor the day. The lucky winner could alsochoose a Range Rover or an Audi Q7 ifthey preferred a four-wheel driveexperience. All the funds raised will goto the Behçet’s Syndrome Society.”A delighted Debbie said: “Having

worked at the centre since November2012, I have seen at first hand howthe Society and the local group doso much for people in the area withthis rare disease, offering support andsharing advice and treatments. I amso glad that the funds raised willcontinue to help both the Society andthe local group flourish, and ofcourse I am thrilled (if a little nervous)that a supercar will now be at mydisposal!”Debbie plans to claim her prize on

the day of her son’s forthcomingwedding – and turn up at the church instyle!

Debbie Mitton, lead nurse and manager atthe Birmingham Behçet's Syndrome Centreof Excellence, receiving the keys to the Audi

R8 from BSS support group co-ordinatorAnisha Zaman



PATIENTS CENTRES

Comments from patients attending the clinic

LondonAddress: Behçet’s Syndrome Centre of

Excellence, GP Out of Hours, Ground Floor,North Tower, The Royal London Hospital,Whitechapel Road, London E1 1BB

Lead consultant: Prof Farida Fortune

Clinical nurse specialist: Sally Tillet

Clinic telephone number: 020 3594 6087

Appointment centre telephone number:020 3594 6088

Email address:[email protected]

Usual clinic times: 9.00 to 15.00,first and third Friday of the month

Who to contact in an emergency:Sally Tillet

Support worker: Jean Christians07804 880655*[email protected]

BirminghamAddress: Behçet’s Syndrome Centre

of Excellence, Sandwell and WestBirmingham Hospitals Trust,Birmingham Midland Eye Centre,Dudley Road, Birmingham B18 7QH

Lead consultant: Dr Deva Situnayake

Lead nurse: Debbie Mitton

Telephone number: 0121 5074243

Email address: [email protected]

Usual clinic times: Currently onFridays 8.45 to 13.00

Who to contact in an emergency:Lead nurse, via telephone number

Support worker: Janine Davies07986 229339*[email protected]

LiverpoolAddress: Behçet’s Syndrome Centre of

Excellence, Aintree Rehabilitation DayCentre, University Hospital Aintree,Lower Lane, Liverpool L9 7AL

Lead consultant:Prof Robert Moots

Lead nurse: Denise Price

Telephone number: 0151 529 2091

Helpline number: 0151 529 8123

Email address: [email protected]

Usual clinic times: Currently Tuesdays9.00 to 12.00

Who to contact in an emergency:Denise Price

Support worker: Carol Hughes07757 663983*[email protected]

Contact details for Behçet’s Centres

Ihave been in post nearly 7 monthsnow and am thoroughly enjoying it. Ihave met some lovely people at theclinic, who have all helped me todevelop a better understanding ofBehçet’s disease. I did not fullyunderstand what a debilitating andsometimes disabling disease it is, andhow it can dramatically affect patients’everyday living.Employment is a major issue. I am

shocked to find employers unsympa-thetic to patients who need time off workfor appointments and treatment at clinic.Most patients appear to take annualleave to attend appointments or whenthey are too ill to work, which isdisgraceful. I am witnessing bullyingand harassment of patients by theiremployers, who are eitherbeing forced into workingadditional hours, even whenthey are obviously unwell, orbeing disciplined as they arestruggling to manage in thework place.Patients are fearful that they are

going to be asked to leave or even

Liverpool: employment issues

sacked because of the time they havebeen off sick, which just adds tothe stress of how they are goingto keep a roof over their heads orpay the ever increasing bills –additional stress that they do notneed when trying to cope withan illness like Behçet’s disease.

attending the clinic who are reallyimpressed with being able to see theconsultants all in one place (see box).More recently, we have added a psych-ologist and a dermatologist to the team.The Liverpool Support Group is

growing, and people who attended the lastmeeting came from Lancashire, NorthWales and Cheshire.

Carol Hughes

“As patients of Professor Moots for up to 12 years and regular visitors to the manydifferent clinical locations we have been in, we can honestly say that the move tothe new Liverpool Centre of Excellence is the best move yet. Having theconsultants in one place means we can be seen all in the one day and get thetreatments we need without having to spend different days travelling back andforth to appointments. We now also have a specialist Behçet’s support worker atthe centre, Carol Hughes. Carol being on hand in the centre has helped tointroduce us to more patients with Behçet’s disease. It's really nice being able totalk to people who have something in common. Carol has also helped with advice,filling out forms and helping to build a bigger support group. Having a supportworker has made a big difference to us, the centre and the support group.”

“I’m sure you know what a huge difference the clinic has made to my life, and Idon’t say that lightly. You’ve given me so much help and advice and been a friendlyface at every clinic appointment since you took up the position. This diseasecan be very ‘lonely’, and having the support has made such an enormousdifference to me.”

On a lighter note, I have had reallypositive feedback from patients

*Please note that the support workers are part time and may not respond the same day



Where can I be referred to?It is up to you. You can choose whichCentre would be most convenient for you– Birmingham, Liverpool or London.Who can refer me?Any medical practitioner who knowsabout your Behçet’s disease can referyou, such as your GP, hospital consultantor dentist.Do I need to have a confirmeddiagnosis of Behçet’s disease?No. We accept referrals for patients withpossible or probable Behçet’s diseaseas well as those with a confirmeddiagnosis.Why should I be referred?Of course, it is your choice to be referredor not. You may not wish to be referredif your Behçet’s disease is already wellcontrolled, or if you do not want to travelto a Behçet’s Centre. However, you maywish to be referred if you feel yourBehçet’s disease is not well controlled orthat you would benefit from a secondopinion or the multidisciplinaryapproach of our clinics, as these shouldreduce the number of appointments youattend for your Behçet’s disease.

How do I go about getting areferral?At your appointment with your medicalpractitioner, explain that you would liketo be referred to the Behçet’s Centre.You might like to:

Further informationFurther information is available onthe Behçet’s Centres websitewww.behcets.nhs.uk, or please feelfree to ring us:

� Birmingham: 0121 507 4243

� Liverpool: 0151 529 8123

� London: 020 3594 6088

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Referral details foreach clinic

� Birmingham: Dr Situnayake,Sheldon Block, Birminghamand Midland Eye Centre, CityHospital, Dudley Road,Birmingham B18 7Q8Email: [email protected]

� Liverpool: Professor R J Moots,National Behçet’s Centre,University Hospital Aintree,Lower Lane, Liverpool L8 7ALEmail: [email protected]: 0151 529 2944

� London: Prof Fortune c/o SheilaBower, Behçet’s CentreAdministration, 1st Floor,Dental Institute, New Road,London E1 1BBFax: 020 3465 7954Email: [email protected]

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PATIENTS CENTRES

Referral to the centres: FAQHere, SallyTillet of the London Centre answers the most common questions about referrals.

� Explain that we offermultidisciplinary clinics withdoctors from different specialtieswho are all experienced in treatingpeople with Behçet’s disease

� Explain that the service is nationallycommissioned, so there is no cost tothe GP

� Direct the doctor to our website(www.behcets.nhs.uk)

They will be familiar with writingreferrals but may wish to:� Say they would appreciate oursupport in the management of yourBehçet’s disease

� Explain the way Behçet’s diseaseaffects you (for example, your eyes,mouth, skin, joints)

� State what treatment you havealready been on and its effect

What about non-English patients?The Behçet’s Centres are commissionedfor people in England. If you live outsideEngland, your doctor will need to gainapproval from your NHS (for example,NHS Scotland or NHS Wales). Weaccept referrals from overseas, and thereis a charge for international patients.Please contact the centre of your choicedirectly about this if it applies to you.What happens next?Once your referral has been received inthe Behçet’s Centre, it will be approvedby a doctor and you will be offered yourfirst appointment. There is usually a fewweeks’ wait for your first appointmentunless the referral states that you need tobe seen urgently.

Have you renewed?Our new membership year started on 1 September.So, if you have not already paid for 2013-14, and arenot exempt, your subscription is now due.

Renewal forms were enclosed with the summernewsletter, and we are grateful to all those memberswho have returned them with payments or directdebit instructions. If you already pay by direct debitand have not changed your contact details, therewas no need to do anything. If you have informed usthat you are in receipt of UK state benefits, you willhave free membership.

Otherwise, do please renew your subscription bythe end of October. If we have not received a payment or heardfrom you for over a year, we may have to take you off our mailing list. You can payby card or set up a direct debit on our website, or you can send a cheque to ouradministration office. If you are not sure, or would like to check the details on ourdatabase, please do not hesitate to contact Chris at the office or to email me [email protected].

Many thanks Alan Lane, HonTreasurer

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Iwas very kindly invited to the sixthEURORDIS Summer School, whichtook place in Barcelona, Spain, for aweek in June.I was very keen to get a place at the

Summer School, because I wanted tobecome a Patient Advocate and broadenmy understanding (in relation to rarediseases) of:� Drug development� Ethics� European Medicines Agency� European research projectsHalf of me was overwhelmed when Ireceived an email saying that I had beenselected to participate at the SummerSchool. All I was thinking of was theknowledge I would absorb, and the helpand advice I would be able pass on toother patients and carers whodesperately need it. The other half of mewas petrified about learning theterminology and medical jargon I wouldneed to know to understand the seminarsheld by top researchers and scientists.When I reached my hotel safe and

sound, I was greeted by two lovely kindladies, Maria and Nancy, who hadorganised the Summer School. I wasthen introduced to a large group of otherparticipants. It was so nice to meet other

patients and organisations that workextremely hard in their rare diseaseareas.Day 1 was a sociable event at a

fantastic restaurant, where weintroduced ourselves to each other and Ihad the pleasure of meeting Yaan LeCam, CEO of EURORDIS. We had along chat, and I was able to increase hisknowledge and raise his awareness ofBehçet’s syndrome.I met some wonderful people at

EURORDIS, and I now know a little bitmore about other rare diseases. I havealso got greater understanding of theimportance of patients taking part inclinical/drug trials, as well as the valueof patients on committees and thedifference they can make.I wish to continue working with

EURORDIS and exchanging valuableinformation and support when needed.On my last day of Summer School,

we were all asked what we think ourorganisation’s proudest moments havebeen. I was very happy to tell them thatit was our three brilliant new Centres ofExcellence that have opened in Englandand that in a few years’ time weshall have enough researchers workingon Behçet’s disease to eventually finda cure. Anisha Zaman

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After years of seeminglydisconnected symptoms, I was

eventually diagnosed with Behçet’sdisease way back when the Beatles werestill together (1969)! It is a surprise tome that I didn’t get involved with theSociety sooner. In fact, it was only whenan office colleague visited the eye unit atthe Royal in Liverpool and saw a posterfor the local support group that I got intouch with Angie and joined the Societylater in 2007.Later that year, I attended the AGM

and volunteered to assist with theHelpline. I have learnt a great deal aboutBehçet’s disease from my involvementwith the Helpline, and I am regularlyboth inspired and angered by some ofthe bravery and suffering of people withthis unpredictable and relentlesscondition.I was delighted and gobsmacked to

be asked to become a Trustee and feelvery privileged to be further involvedwith the Society.I retired from a career in information

technology last year, and I’m workinghard to come to terms with all the joys ofmy new state. I am married to Lin (Lindaor Senior Management on her gooddays). We have four children and fourgrandchildren. I enjoy reading, sport,music, and avoiding hoovering andgardening – alas not always withtremendous success where the last twoare concerned! Alan Booth

New trusteeAlan Booth

International Conference on Behçet’s Disease – early noticeThe 16th International Conference on Behçet’s Disease will be held in Paris inSeptember 2014. The scientific conference for medical professionals will run fromThursday 18 to Saturday 20 September. The patients’ conference is a 1-day eventlikely to be held on Friday 19 September. From our discussions with the organisers,we believe the presentations will be in English. The venue is Cité InternationaleUniversitaire de Paris.

We will continue to work with the organisers to understand if there is a registrationfee for the Patients Conference and where there is reasonably pricedaccommodation. We will update you as we receive further information.

EURORDIS Summer School

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That is the comment I hear about thefundraising update in the newsletter,

but it isn’t true – every now and again, Iget some correspondence from membersmentioning something they read in arecent article. It is totally understandable– our members have many otherproblems to worry about, and fundraisingisn’t usually top of the list. I would likemembers, friends and family to think ofit sometimes because without the incomefrom donations and fundraising, theSociety would not be able to continue atthe level it does at the moment, anddespite the success of the Centres ofExcellence, there is still much to do.Members in Wales, Scotland and

Northern Ireland do not have the sameaccess to the centres as Englishmembers, which needs reviewing, andthey also do not have the advantage of asupport worker – something that we hopeto address as soon as possible.One of the problems is that

fundraising is always in the news, withsomeone either complaining about itbeing too active or reminding you thattigers and pandas will disappear withoutyour £2.00 per month. There are morethan 160,000 registered charities in theUK, so giving 1p to each is a difficultproposition. The top charities (those inthe top 100 with the most income) arewell placed to spend donors’ money on

advertising and making sure their charityis on the TV or in the news. We clearlycannot compete with them. To illustratethe difference, charities like CancerResearch UK and the Royal NationalLife Boat Institute get in excess of £2million, every month, just from bequests.We wouldn’t mind just 1 month everyother year like that.We, like many other charities our

size, tend to rely on the efforts andcommitment of just a few people, and wewould like to broaden our appeal to alarger group to help increase the totalincome. It is only with the support ofmembers that we can do this. Each year,new people come forward and do some-thing that helps to raise both profile andincome, by not wearing trousers for a year,jumping out of an aeroplane, or walkingand running for sponsorship money fromfriends, family and colleagues.If you got this far into the article,

thank you for sticking with it, and can Iperhaps persuade you to consider doingsomething for us? I don’t mean run amarathon or sit in a bath of beans for aweek (although if you fancy that, we canhelp). I mean do something that you doanyway. The list is endless – a coffeemorning with friends, a sponsored knit-ting project, a fun scrabble evening oreven monopoly (not with real money!).Children are bombarded with fundraisingfor school because it works; it usuallyinvolves sponsorship, but could be any-thing that people will support. It doesn’thave to be unusual – a garage sale or acar boot sale can raise quite a lot, and if10 people get together to do it, theamounts raised soon add up.I was asked the other day by

JustGiving (the online sponsorshippeople) if we do other electronicfundraising. They meant via Facebookand Twitter, as well as receiving donationsdirect from people’s smart phones. Wehave several very active Facebook sites,and indeed one devoted to fundraising, butI am not sure they get the fundraising

FUNDRAISING

“Nobody reads that bit”

We are pleased to announce thathandmade Christmas cards will beavailable again this year. As in previousyears, all the designs are new for thisyear. The price has once again beenheld at an inflation busting £4 for apack of five cards, with the postage forfive or 10 cards being £1.20.

The text on the inside of each cardsays “Wishing you a Merry Christmasand a Happy New Year”, withinformation about the Society on theleft-hand side.

We are ready for yourorders as soon as youreceive your newsletter,and our last ordering dateis 3 December. However,please be aware that wehad very few cards left bythis date last year. Allcards are subject toavailability and we mayneed to substitute somedesigns, especially forlater orders.

We can also offer you personalisedChristmas cards again this year. Theseare larger than our packs of five andallow you to specify your own messageinside along with a company logo oryour family name. The designs areavailable on request, with a minimumorder of 20 cards for just £30 (plus p&p).

Please send your orders, including acheque made payable to “Behçet’s

Syndrome Society”, to 8 Abbey Gardens,Evesham,WorcesterWR11 4SP.

Evesham Advent ServiceWith Christmas on our minds, we have been invited to attend the AdventService on 8 December at All Saints Church in Evesham. The collection fromthe service will be donated to four charities with bases in Evesham, one of thembeing the Behçet’s Syndrome Society. It may be that we are asked to swell thenumbers of the choir, but we will keep you updated via the website as furtherinformation becomes available.

Christmas is coming!



input they deserve. Twitter is beyond me,but the big charities are targeting it fordonations. Can anybody help?We haven’tgot a fundraising app for smart phones.Should we have one? All these pointsneed thinking about, or acting on, andagain we need your support to make themwork. Please let me know if you have afundraising idea or want support to thinkof something. You really don’t need to befit and active to do many fundraisingevents; it just needs the will and a littletime to make it succeed.As usual, I would like to thank

everyone who works towards raisingmoney for us. This summer has seen avariety of ideas put into place, as well asthe stalwart regulars without whom wecould not continue our work, and we arecontinually grateful to them.If I were a betting man, I would say

there are no fundraising ideas thathaven’t been tried before. Anyonewilling to take the bet?

Chris Phillips

After the inspirational ride by ChrisFroome in the Tour de France,

we’ve been inspired to get on our bikes!We can’t guarantee you yellow jerseys orOlympic medals, but we can guaranteeyou a ‘Grand depart’ from the LondonCentre of Excellence and a ChampsElysees style finish under the EiffelTower in Paris. In between, we’ll becycling around 200 miles through bothEnglish and French countryside raisingmoney for the Behçet’s SyndromeSociety.We’re aiming to finish in Paris tocoincide with the International Behçet’sDisease Conference in September 2014.If you, a friend, a colleague, a family

member or someone you know enjoyscycling or even fancies going on atandem and may like this type ofchallenge, please get in touch. We’llneed to know how many people areinterested so that we can plan wherewe’ll stay and how much you’ll need toraise. We can help with fundraising ideasand sponsorship forms. We look forwardto hearing from you by our AnnualConference on 19 October.

JanMather

Tour de Behçet’s!

The Behçet’s Syndrome Society wasone of the first to take up the offer

from EURORDIS to have a websitededicated to our condition a few yearsago. The French and Italian societiescame together to help to produce the siteand our pages. I recently had somestatistics from the site, which are veryinteresting.Since its creation the Behçet’s

community has:� 8 patient groups featured� 811 members in total� 66 testimonials� 19 articles� 224 forum topics

Who has visited the Behçet's DiseaseCommunity since April 2012?There have been 31,177 unique visitors.What do they do when they visit?These visitors visit 2.5 pages onaverage. The most visited pages of thecommunity (https://www.rareconnect.org/en/community/behcet-s-syndrome/)are:� learn/faq� article/manifestations-of-behet-s-disease

� forum� article/2012-my-self-diagnosis-and-its-validation

� forum/topic/ear-pain

Where are visitors coming from?The top 10 countries with most visitorsare:� United States – 6856� Italy – 5080� France – 4192� United Kingdom – 2418� Germany – 2071� Spain – 1455� Canada – 1138� Algeria – 822

Behçet’s SyndromeCommunity websitehosted by Eurordis

� Switzerland – 613� Morocco – 527

How are people finding thecommunity on search engines?Top 10 keywords (the words people use ina search engine to find the community)are:� behçets� behcet's syndrome� behcet's disease� behcet maladie� morbus behcet� neuro behcet� maladie de behcet� maladie behcet� behcet krankheit� maladie b7

How did visitors find the community?� google – 24 838� (direct) – 3512� facebook.com – 957� m.facebook.com – 546� eurordis.org – 424� ask – 328� google.com – 301� bing – 279� yahoo – 264� babylon – 170

We hope to produce similar statistics forour own UK site and will print them forinformation once we have them.

Chris Phillips

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Behçet’s disease is a variable andfluctuating disease, making it

impossible to predict the onset orclearing of one’s symptoms. This makesit extremely difficult to keeparrangements and commitments, bookappointments and, in particular,maintain a consistent working pattern.Often, people with Behçet’s disease willhave to take time off work and or give upemployment due to its fluctuatingpattern. Behçet’s disease is poorlyunderstood by many employers, so thereis a lack of sympathy. Those with thecondition are often told that they “lookOK” or “don’t look sick”, making it veryhard to establish a case or justify thatthey are too unwell to work.However, it is unlawful to

discriminate against workers because ofa physical or mental disability or fail tomake reasonable adjustments toaccommodate a worker with a disability.Under the Equality Act 2010, a person isdefined as disabled if they have aphysical or mental impairment whichhas a substantial and long-term effect ontheir ability to carry out normal day-to-day activities. These day-to-dayactivities include things such as using atelephone, reading a book or usingpublic transport. The Equality Act 2010provides disabled people with protectionfrom discrimination in a range of areas,including employment and occupation.Employers should ensure that they havepolicies in place which are designedto prevent discrimination in thefollowing areas:� Recruitment and selection� Determining pay� Training and development� Selection for promotion� Discipline and grievances� Countering bullying and harassment

Harassment is when a person might findsomeone’s behaviour towards themoffensive, frightening, degrading,humiliating or in any way distressing.Examples of harassment could involvenicknames, teasing, name calling,

pulling faces, jokes, pranks or any otherbehaviour which you find upsettingbecause of your disability. Even if thisbehaviour is not deliberately meant tohurt you, it may still count as harassmentif you find it upsetting.It is against the law for an employer:

� to treat you less favourably becauseyou are disabled (directdiscrimination)

� to discriminate against you becauseof your connection with someoneelse who is disabled (discriminationby association)

� not to make reasonable adjustmentsto the workplace to allow you towork or continue to work

� to treat you unfavourably because ofsomething connected with yourdisability

� to harass you� to victimise you if you take legalaction because of discriminationagainst you, or if you help someoneelse to take legal action because ofdiscrimination

Citizens Advice Bureauinformation

There are rules about what the law countsas a disability, when considering whetheror not discrimination has taken place.The law says that a disability means

a physical or mental impairment, whichhas a substantial and long-term negativeeffect on your ability to carry out normalday-to-day activities. There are specialrules for people with cancer, HIV andmultiple sclerosis, and for people whoare blind or partially sighted and havebeen certified so by a consultantophthalmologist or local authority.According to this definition,impairments can include sensoryimpairments such as sight and hearing ormental impairments such as learningdisabilities, dyslexia and mental illness.To have a long term disability means

that the disability:� has lasted for at least 12 months or� is expected to last for at least 12months or

Discrimination at work

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The Behçet’s Forum is the group ofmedical professionals who meet

twice a year to share research andknowledge relating to Behçet’s disease.The last meeting was in March and washeld at the Queen Elizabeth Hospital inBirmingham. It was a well attendedmeeting with a great deal of informationsharing.The first presentation was from Dr

Graham Wallace, who outlined thesubmission that has been made from theForum for funding of research intoBehçet’s disease. A joint submission hasbeen made by the Centres and Leeds tothe National Institute for HealthResearch. The fact that we now haveNationally Commissioned Centresincreases the possibility of success, butwe will know the outcome by the nextnewsletter.Prof Miles Stanford then presented

his findings on Campath as a therapy forBehçet’s disease. He had undertaken

Behçet’s Forumextensive research into case studies,finding that the drug lacked the samebody of evidence for the treatment ofBehçet’s disease that infliximab,adalimumab and alpha-interferon have. Itwas agreed that a specialist with directexperience of prescribing Campath wouldbe invited to present at the next Forum.Dr GrahamWallace then presented on

further work on the genome-wideassociation study (GWAS) and new areasof the human genome that may be relatedto Behçet’s disease. The final presentationwas from Drs Helen Leavis and Martinvan Hagen, who had flown fromRotterdam to present on microbiota in thegut. They are seeking support for a trial toidentify specific flora in the gut ofpatients with Behçet’s disease. Furtherinformation will be shared in thenewsletter if the trial is successful inreceiving funding.

Jan Mather

Lynn Barnes, Anisha Zaminand Janine Davies

Support group contacts

Area Email contact

Birmingham [email protected]

Cambridge [email protected]

Devon [email protected]

Leicester [email protected]

Liverpool area [email protected]

London eagle59575.aol.com

Northern Ireland [email protected]

Portsmouth area [email protected]

Scotland [email protected]

Surrey Nth Hants [email protected]

These are the contact details for the various local support groupsthat have been, or are in the process of being, set up. Please get in

touch if you are interested in becoming involved, or contact theoffice for more details. If you don’t have one in your area and wouldlike to help, please contact the office and we will see what support

we can offer.

� is likely to last for the rest of yourlife and/or you are expected to livefor less than 12 months

The following are not included:� Addiction to alcohol, nicotine orany other substance not prescribedby a doctor; however, damage tohealth caused by the addiction maysometimes be considered a disability

� Hay fever� Certain personality disorders, suchas voyeurism or a tendency to steal,set fires, or physically or sexuallyabuse other people

� Tattoos and body piercingIf an employee has a disability that ismaking it difficult to work, employersshould consider what reasonable adjust-ments they can make in the workplace inorder to help, or schedule an interviewwith the employee to discuss what canbe done to support them.If you feel you are being

discriminated against at work because ofyour disability, you may be able to bringa claim to an Employment Tribunal.However, it is best to talk to youremployer first and try to resolve thematter informally, to minimise thenegative effects on all parties involved.

Further help for thoseexperiencing discrimination

The Behçet’s Syndrome Society can putyou in contact with your SupportWorker, who can assist you in makingcontact with the following equal right’sagencies. We are here to ensure that allpatients have access to information andassistance with claims and appeals whennecessary. We are here to providesupport and advocacy when you need it.� Equality and Human RightsCommission (EHRC):www.equalityhumanrights.com

� Directgov(England and Wales only):www.direct.gov.uk

� Employment Rights in Ireland:www.employmentrightsireland.com

� Is that discrimination?(England and Wales only):www.isthatdiscrimination.org.uk

Jean Christians

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Disclaimer: The material in this newsletter is provided for personal, non-commercial, educational and informational purposes only and does not constitute arecommendation or endorsement with respect to any company, medical professional or product. The Society makes no representations and specifically disclaimsall warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of anymaterial contained in this or attached document/s. You should seek the advice of a medical professional regarding your particular situation. September 2013

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The internet is a fantastic toolthat offers a wealth of

knowledge waiting to be ex-plored. When most of us wereyounger, if we needed an answerto a question our parents couldn’thelp with, it would involvedigging through our referencebooks at home or a trip to thelibrary to find the answer. Nowthe answer is often available atthe touch of our fingertipswithin seconds.If you Google

‘Behçet’s’, you get around736,000 results – andBehçet’s is a rare disease!The results span the wholespectrum from the well-researched and learned articles tothe bizarre and ridiculous. I’m suremost of you will have found at leastone alleged ‘cure’ and also have readarticles that suggest random things thatwill allegedly be far more effective thanresearched medication.We can reassure you that the inform-

ation on our website (behcets.org.uk),which has recently been re-launched, isvalidated by our Medical AdvisoryPanel. Our medical factsheets areproduced by our Medical AdvisoryPanel and other specialists we have arelationship with, and are based on factsand experience. Each has the name ofthe consultant on the bottom and the dateit was written to provide reassurance toboth you, our members, and to your GPif you choose to print them and takethem for discussion.Our Medical Advisory Panel is

totally voluntary and supports usenormously. If our Helpline volunteersreceive a call they cannot answer or wereceive a query of a medical nature at theoffice, we anonymise it and send it to thePanel for their consideration. Generally,the response comes back within a coupleof days and is appreciated by the personasking the question. If you’d like to

make use of this facility, please get intouch with the office by phone or email.

As with all social media sites, thereare some pitfalls you should bear inmind when using them.Our Facebook page and Forum are

not moderated by medical pro-fessionals, so no information on thesites replaces the need to speak to amedical professional about yourcondition. It’s fine to ask for otherpeople’s experiences of treating

symptoms or of drug treatment,but everyone is different andreacts differently to medication,so please make your decisionbased on discussions with yourmedical professionals.Please be aware that the

Society has only one employee,Chris Phillips, and the Behçet’sPatients Centres employ threepart-time support workers.Others do have the Society intheir Facebook profile, butthat’s more a show of loyalty tothe charity as they are not

employed by us and do not alwaysrepresent our views.Finally, please don’t use these

facilities to criticise individuals ormedical professionals. Our social mediasites are intended for people to supporteach other, and the level of knowledgeon them represents where people are ontheir individual Behçet’s diseasejourney. It’s also worth bearing in mindthat libel actions related to postings onsocial media have been in the papersrecently. We have a very light touchmoderator role with these sites, but haveneeded to remove inappropriate com-ments and also access to the sites.We’re really pleased with the way

patients are using our website and oursocial network sites. The way patientsare supporting each other in this virtualworld is fantastic, and we’re glad we canfacilitate this, but please bear thesepitfalls in mind.Safe surfing!

Social media and the internet

Social mediaThere has been much in the mediarecently about social networks and theuse or misuse of Twitter, Facebook andchat forums. The Behçet’s SyndromeSociety has had a presence in this areafor some time, and its use has expandedin the past year. We have a very activeFacebook site with around 725 members,a Forum with around 425 members and aFacebook fundraising page which hasjust been developed.The sites owned by the Society are

open and inclusive to all. We hope youfind them useful in sharing experiencesand gaining support from others insimilar situations. We know they’reparticularly useful when people are inhospital or housebound, to extend theinteraction with other people, and that’swhy we’re keen to support them.


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