behçet's -spring 13 12pp...15 the daedings, deddington, oxfordshire ox15 0rt administration...

NEWSLETTER No 24

Behçet’s Syndrome Society Newsletter – Issue No 24 – Summer 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

Summer 2013 Summer 2013

Birmingham andLiverpool Patients Centres

declared open!

Cutting of the Birmingham ribbon: (from left) Lady Mayoress of Birmingham Mrs Kathleen Lines,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

Professor Robert Moots and Jan Mather at the Liverpool Centre

Behc?et's - Spring 13 12pp.qxd:Behçet's 19/6/13 11:30

Behçet’s Syndrome Society Newsletter – Issue No 24 – Summer 20132

Birmingham openingLocal TV and radio personality Professor Carl Chinn MBE andthe Lord Mayor of Birmingham were on hand on 16 May toofficially open the new centre at the City HospitalBirmingham.

Carl, who is Professor of Birmingham Community History atthe University of Birmingham and is the author of scores ofbooks and articles on the social history of the West Midlands,

cut the ribbon atthe BirminghamBehçet’s SyndromeCentre ofExcellence, alongwith Cllr JohnLines, Lord Mayorof Birmingham.

Carl and the Mayorwere joined byChris Phillips,

Director of the Behçet’s Syndrome Society, and Dr ChrisDeighton, President of the British Society for Rheumatology,as well as patients and staff from the centre.

Dr Deva Situnayake, clinical lead at the centre, explained: “InWestern Europe, Behçet’s syndrome is very rare, with only anestimated 500 people in the UK having a diagnosis. However,while the syndrome is currently incurable, it doesn’t mean it isuntreatable, andwe were delightedto become host ofone of the nationalcentresspecialising in thetreatment of thisdisease.

“We were thrilled towelcome Dr CarlChinn and the Lord Mayor to officially open the centre. Theopening of the centre will make such a positive difference topatients’ lives from across the West Midlands and beyond, aspeople with Behçet’s syndrome can now come to the centreand be seen by consultants from different specialties on thesame day, instead of having to attend different appointments.”

Radio BBC WM live broadcast!Before the opening of the Birmingham Centre,Sarah Millard at City Hospital Birminghamarranged for Dr Deva Situnayake, DebbieMitton, Jan Mather and Anisha Shaikh-Zaman(who is a patient at Birmingham) to beinterviewed live on BBC Radio WM on Prof CarlChinn’s show. Unfortunately, Anisha was unwell

and was unable to attend.

Prof Carl Chinn is a local celebrity in Birmingham; hesupports anything that promotes the city and is veryinterested in both the illness and the Centre. Although it wasa live interview, Carl put everyone at their ease and kept themrelaxed throughout the broadcast.

We are seeking permission to load the broadcast onto ournew website and will let you know when it becomes available.

Liverpool openingOn 28 February, the new centre at Aintree Hospital inLiverpool was opened. Patients, clinicians and local GPswere all invited to celebrate this major step forward for thetreatment of patients with Behçet’s disease.

The team at the centre is as follows:

� Professor Robert Moots, Professor of Rheumatology

� Dr Anu Jacob, Consultant Neurologist

� Mr Ahmed Kamal, Consultant Ophthalmic Surgeon

� Mr John Kirwan, Consultant Gynaecologist

� Denise Price, Clinical Nurse Specialist

� Dr Bijay Rajlawat, Consultant in Oral Medicine

� Carol Hughes, Support Worker

Professor Moots opened the centre with Jan Mather andsaid that he was delighted to welcome all the patients andprofessionals to this open day.

The multidisciplinary clinic has now been working sinceSeptember 2012, and while we have, as may be expected,had our teething problems, we are still working hard toensure that the service we offer to our patients is the best.

We have appointed our new Clinical Psychologist, SophieCampbell, and she is due to start in March. We aredelighted to welcome Carol Hughes, our Support Worker,to the team. She started work in January and, with herhelp, we hope to get plenty of patient feedback to enableour service to grow with patients at the forefront. Carolattends our clinics, currently held on a Tuesday morning,each week and is available to help, advise and take anycomments, so please feel free to approach her when youcome to the clinic.

Our database, in the capable hands of Damian Grimes, istaking shape quickly. We are currently populating this withall the relevant information so that clinicians can have “ata glance” clinical information during consultations as wellas being able to interrogate the database in the future tolook for trends, successful outcomes and treatments, andresearch opportunities and to identify potential problems.

The three National Centres have worked together toproduce a new website, and this can be accessed directfrom the BSS website. This is just part of the expandingservices for patients with Behçet’s disease, and we lookforward to updating members about any changes in futureissues of the newsletter.

PATIENTS CENTRES

Patients at the Centre

Prof Murray, Chris Phillips andJanine Davies

Admin staff from the Centre



PATIENTS CENTRES

Hello everyone, I’m Jean Christiansand I have recently been appointed

by the Behçet’s Syndrome Society asHealth Care Support Worker, based atthe London Centre of Excellence. I amthe third and final support worker to beappointed. I began my post in March andhave, so far, attended two clinics at thecentre where I have been warmlywelcomed by the staff and patients.Although my colleagues, Janine inBirmingham and Carol in Liverpool, aremore established in their roles, it is stillrelatively new to all of us, so we will beworking together closely, sharing in-formation and building on one another’sstrengths and experiences to provide thebest possible service for patients.

My role as support worker is toensure that the non-medical areas ofpatient care are met both in and outsideof the clinic. I will be attending the clinicdays in London, and will liaise betweenpatients and clinicians if and whenneeded. I will ensure that patients areaware of what is available from the statebenefit system and will assist withclaims/appeals if required. I would liketo remind you that the Royal LondonHospital can provide accommodation for

London Support Workerthose attending clinic from very faraway, and I want to help patients toaccess this and also receive travelreimbursement as permitted. I will workclosely with the clinicians on the team,to ensure that patients have access toinformation regarding occupationaltherapy aids and have access to supportnetworks, whether by telephone, onlineor face to face.

Previous experienceI don’t want to give my age away, butnearly 20 years ago, I graduated fromNew York University with a master’sdegree in therapeutic recreation andleisure studies, and I have spent most ofthis time working as an “ActivitiesCoordinator” in various settings such asresidential, acute and day centres. I amexperienced in running both individualand group activities and leisure edu-cation, and have also facilitated familyand carers support groups over the years.

In the past, this work has generallybeen seen as a luxury, not a necessity.However, for someone who is living witha potentially limiting condition, my aim

LondonAddress: Behçet’s Syndrome Centre ofExcellence, GP Out of Hours, Ground Floor,NorthTower, The Royal London Hospital,Whitechapel Road, London E1 1BB

Lead consultant: Prof Farida Fortune

Clinical nurse specialist: Sally TilletClinic 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 Christians([email protected])

Birmingham

Address: Behçet’s Syndrome Centreof 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 Davies([email protected])

LiverpoolAddress: Behçet’s Syndrome Centre ofExcellence, 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 Hughes([email protected])

Contact details for Behçet’s Centres

has been to help them make the most oftheir lives through this holistic approach.

I only worked for 7 years in the USbefore relocating to the UK. It was verydifficult coming to a new country andestablishing myself in a relativelyunknown field. Back then, no one evenknew what I was talking about when Iused the words “therapeutic recreation”.



PATIENTS CENTRES

During this time, I came across anorganisation here in the UK promotingthe importance and value of activities forolder people and those with disabilities.Called NAPA (the National Organisationfor the Provision of Activities), thisorganisation provided a great way forme to gather knowledge and training inthe UK and to gain support in theseuncharted waters. The UK has a verydifferent healthcare service from the USand I had a lot to learn!

Starting workInitially, I spent the first couple of weeksdoing lots of research online as Behçet’sdisease was not something I had heard ofbefore applying for this post. TheSociety’s website has been a really goodresource for me, as I regularly read themembers’ postings where they share theirexperiences and knowledge with oneanother. I was also very excited to comeacross another website called theEuropean Organisation for Rare Disease(EURORDIS), where there is a smallarticle defining the term “therapeuticrecreation” and explaining howrecreational and leisure activities canbenefit people living with rare diseases.Ultimately, they state, people living with

a rare disease and their families andcarers need time off to spend some timein an environment where they can stopthinking about their disease, and wherethey can meet, and socialise and sharewith, other people facing similarconditions. This is something I alreadyhave noticed happening in the waitinglounge in the London Clinic: patientssharing stories with one another,providing support to one another andlaughing together. I have been told by afew patients I have met at clinic that itwas the first time they had met anotherperson, face to face, with Behçet’sdisease, and this is one aspect I am hoping

to change through the establishment ofsupport groups. It is also something theSociety has been keen to encourage forsome time, and I have already startedlooking into suitable areas and venues,and gathering patient feedback.

In closing, I’d like to take thisopportunity to thank the patients, theSociety and the team at the LondonCentre of Excellence, for making mefeel so welcome. I know I still have lotsto learn, so please feel free to either ringme or email me with any of yourideas/suggestions. This is a new role andthere are endless possibilities.

Jean Christians

Annual Conference – Saturday 19 October 2013We’re pleased to announce that the next Annual Conferenceand Annual General Meeting for the Behçet’s SyndromeSociety will be held on Saturday 19 October 2013. The venueis the Forest Hotel, Station Road, Dorridge, West MidlandsB93 8JA (www.forest-hotel.com). All members and theirfriends and family are invited to attend. The feedback from thelast conference was overwhelmingly positive with regard toboth the medical presentations and the opportunity to chat toother people.

This is a very central location for all our members, with easytravel connections whichever way you prefer to travel. It is only15 minutes drive from Birmingham International Airport for ourmembers in Northern Ireland and Scotland; it is oppositeDorridge railway station, which has a direct line to LondonMarylebone and Birmingham; and it is 5 minutes from theM42, which links with the M5, M40 and M6. The hotel has afree car park attached, has full disabled access and welcomesguide dogs.

Although the hotel has offered us a very competitive rate forthe conference, the accommodation remains quite expensive.

If you’d like to make a weekend of it (Stratford-upon-Avon,Leamington Spa and Warwick are all in very close proximity),you could consider one of the local Premier Inns, such as theBarn, which is where the Trustees will be staying.

The agenda for the day will be published in the nextnewsletter, but we will be aiming to serve tea/coffee on arrivalfrom 10am and start the conference at 10.30am. The day willfinish at 4.30pm.

We are working with the team at the Birmingham Centre ofExcellence to finalise the programme, which will includepresentations from a psychologist to assist with coming toterms with a chronic condition and the chronic painassociated with it, a rheumatologist to explain about theillness, and other medical presentations to be confirmed in thenext newsletter.

I’m confident it will be a good day for both gatheringinformation about Behçet’s disease and meeting other peoplewith the condition. So please put the date in your diary,whether you’re new to the illness or have been coming alongto AGMs for the past 30 years! Jan Mather

ObituariesIt is with great sadness that we report the passing of two of our very active membersin June 2013.

Peter Charters, who volunteered on our Helpline from 2008 and who had Behçet’sdisease, died of bowel cancer. He had been ill for a long time. Peter was a greatsupport on our Helpline both to callers and to his fellow volunteers and was alwaysupbeat and positive despite his own health issues.

Ruth Page died after being admitted to hospital. Ruth was one of our juniormembers who had suffered from Behçet’s disease from a young age and was only18. Ruth was an active administrator of our Facebook site, and although she hadbeen very ill throughout the past year, she provided ongoing support to othermembers.

Both Peter and Ruth will be missed by the Society, and our thoughts andcondolences are with both Peter and Ruth’s families at this sad time.



High priority projectsInclude poster information in Patient Information Pack

Undertake a survey on the benefits of visiting the Support Worker as initialwork towards considering Support Workers for Wales, NI and Scotland

Psychological impact of being a carer for a BD patient

Friends and family of BD information page on website

Fatigue and pain – are they the same in BD as in other chronic illnesses?

Repeat quality of life survey to work out if there is a difference since theCentres opened and also if there is a difference between those being seen atCentres and others

Carer journeys for inclusion in the newsletter

Email addresses that Trustees/Director can use to send email

Smart phone App on BD for GP use

Identifying patient speakers to train for medical training day

Update the policies and responsibilities of a Trustee to include social media

Update the BSS website

New projects for the SocietyAt the beginning of the year,

following our wonderful success inobtaining funding for the Centres ofExcellence, we asked people for ideasfor projects the Society could focus ongoing forward. The Centres had address-ed many of the goals we were aiming toachieve, and we wanted to poll opinionon future directions for the charity.

We put requests for suggestions ontoour website, on our Facebook page andin our last newsletter, and I’m pleased tosay that we received a number ofproposals from our members. We alsowrote to our Medical Advisory Panel toask for their suggestions and broughtthese together at our last Trustee meetingtogether with the attendees’ ideas.

As you’d expect, we had far too manysuggestions to take forward this year, butwe have prioritised all the ideas and alsocategorised them into those we canprogress alone and those we’d need to besuccessful in obtaining funding toprogress.All the high priority suggestionsare listed here, but please rest assured thatwe have kept all your suggestions.

Can you help the Society?After 7 years as Chair of the Behçet’s

Syndrome Society, I’m announcing myintent to step down from the Board ofTrustees at the AGM in October.

I’ve enjoyed my time leading the charityimmensely, and I’m also incredibly proud ofwhat we’ve achieved over this period – somuch more than I ever dared hope for.However, I now think it’s time for someoneelse to provide the vision and drive the Society forward. I will remain theChair of the Behçet’s Patients Centres, which manages the Centresof Excellence contract, and will obviously remain a strong supporter ofthe Society.

In this edition, we’re welcoming Judi Scott to the Board of Trustees, butwe’re looking to further strengthen the team from both our members and theircontacts. In particular, we’re looking for people with IT skills and legalexperience. If you think you could help, please get in touch with our AdminOffice and Chris will provide you further details about the responsibilities ofbecoming a trustee.

We look forward to hearing from you. JanMather

Ijoined the Society in the early 1990s followingthe diagnosis of my daughter Joanna with

Behçet’s disease when she was 7. Since then, I haveseen the Society flourish to become the hugelysupportive organisation that it is today, and I amthrilled to become a Trustee.

Currently, I send out welcome packs to newmembers and information sheets to anyone whorequests them following a call to the Helpline.

I am a retired teacher whoworked in secondary andspecial needs schools. Inow volunteer with theNational Trust at CanonsAshby House and MarieCurie Cancer Care. I enjoyreading, art and crafts,walking, gardening and history.

I am very keen to offer all the help I can to theSociety. Judi Scott

Many thanks to all those who tookthe time to let us know what projectsyou’d like us to focus on, and it’s not toolate if you’d still like to get in touch.

Please also let us know if you think youcould help in progressing any of theseideas.

Jan Mather

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New trusteeJudi Scott



We are coming up to the height ofthe fundraising season, with

people considering walking, cycling ormore extreme ideas to help raise fundsfor the Society. I know of a familymember of our founder Judith Bucklewho is considering a parachute jump,and we have various contacts regardingthe National Abseil Centre inNorthampton. You don’t have to stretchas far as white water rafting or climbingto Everest base camp to help. Simpleideas, sponsored knitting, a sponsoredsilence, or a coffee morning or ComeDine with Me ideas are all valid. Isuppose we should run a “Behçet’s GotTalent” competition, but we needsomeone called Simon to run it!

Simple ideas tend to be the best. Ifpeople are aware that you have mobilityproblems, they know that a very shortsponsored walk would take a similareffort to achieve as for an able personrunning 10K, so there is no need to putyourself through hell to get a goodresponse from friends and family.

In the last issue, we mentioned theHorner’s Livery Company whose masterhas adopted the Society for this year.They have already raised nearly £10,000towards researching Behçet’s diseaseservices for children in the UK. We arevery grateful to them and will keep youupdated in each newsletter issue

We still have people undertakingunusual events, such as a year without

trousers or a walk along Hadrian’s Wallwhile foraging for food, as well as theregulars who do monthly car boot salesand send us the proceeds. If you look atour accounts, these donations all add upto a large amount and we could not runthe charity without them. We have T-shirts to help publicise your event, newwrist bands and other merchandise tosell to help raise funds, so if you have anidea or want to know about climbingKilimanjaro don’t hesitate to contact theoffice for advice and support. Walk,cycle, run, jump, hop or just sit – we canhelp you to raise money and help theSociety.

Chris Phillips

FUNDRAISING

Fundraising update

Hadrian’s Wall challengeWhen my girlfriend fell ill and ended up in hospital in February2012, I thought that the doctors would get her sorted out andshe would be back out walking miles with me around thetracks of Shropshire in no time. But as the weeks turned intomonths, I felt as though she would never get out of hospital.Constantly unable to keep food down and looking very blue,she had no strength, her oxygen saturation was very low, andshe was turning septic by the minute. We found out later thatprogression of Behçet’s disease had caused gastroparesis.

After 2 months in hospital she finally came home. But sadlyshort of recovered, she was weak and needed lots of care.Several more stays in hospital later, she started to get somestrength back. I was very thankful and pleased that she hadstarted to get back on her feet, and we started to go out forlittle walks now and then.

Then at the beginning of October 2012, after coming to visither at home after work, I found her looking a dark grey colourand very weak. She was finding it difficult to speak, withcentral chest pain. She had another lengthy stay in hospital,the gastroparesis getting worse. It had got so much worsethat now only intravenous anti-sickness drugs would work,and the difficult decision had to be made to give her aHickman line so that she could come home.

Not being a doctor, there was little I could do to help. All Icould offer was to sit there and slowly watch her do her IVsthrough her Hickman line six times a day and talk about theday she will be feeling well enough to manage going for awalk together again.

I love walking, and walking Hadrian’s Wall is something that Ihave been talking about for years. My girlfriend would haveliked to do the walk with me; we often go out and find wildfood and make some tasty meals from it.

The challenge

So that is where I gotthe idea to walkHadrian’s Wall fromSegedunum in the eastto Bowness-on-Solwayon the west coast. Asthe walk is only about86 miles or so, I thought I would add an extra challenge. Itoccurred to me that as my girlfriend has gastroparesis causedby Behçet’s disease, she has a lot of difficulty holding fooddown. So the challenge should be around food. I decided tomake it difficult to put food in to my belly and so came aboutthe idea of foraging the whole route.

I will carry a few things in my rucksack to finish off a meal,such as chick peas (for vitamins), some flour, rice (forcarbohydrate) and spices, a salami or two for a BBQ on oneof the nights and a dozen (free range) eggs for a goodbreakfast each morning. I will be looking for food like berriesand roots, leaves and nuts, and munching my way across thecounty… oh and of course, fungi.

The walk and forage for the Behçet’s Syndrome Society alongHadrian’s Wall will take place between 24 August and 7September 2013. If you would like to follow my progress oflearning as much about wild food as I can, follow myFacebook page on Hadrians Wall Forage. There is also aJustgiving page at www.justgiving.com/Justin-Scott foranyone wishing to support my challenge. People who followthe site can perhaps learn a little something about wild foodand enjoy the great outdoors with a few new ingredients foryour own table.

Justin Scott



For the third consecutive year, RuthFavède has organised a Ladies Only

Ball on behalf of the Behçet’s SyndromeSociety. The ball started when Ruthcelebrated her 40th birthday and wantedto raise money for the charity. She hadso much fun, as did the ladies whoattended, that she’s organised it eachyear since. I’m delighted to say thatRuth raised £941 this year, which is afantastic amount. I’d like to thank Ruth,my sister, for organising this great eventeach year and for inviting me to such awonderful evening! JanMather

I’m delighted toreport that the

Ashton-under-LyneRotary Club has madea further donation of£200 to the Behçet’sSyndrome Society. This is the second yearwe’ve received such a generous donationfrom them. I was invited to present to thegroup at their awards evening on 20 Mayand to receive the cheque on behalf of theSociety. I’d like to thank them again fortheir continued support.

Rotary Clubs exist throughout thecountry and internationally, and theydescribe themselves as “A grass-rootsorganisation consisting of businessprofessionals and community leaders thatvolunteer time, talent and resources inorder to remedy vital community needs.”Their website quotes that they have over1.2 million members worldwide.

The Ashton Rotary Club haveinformed me that they like to supportlocal people involved in charitable work,and I have been successful in myapplication to them because of myfamily roots in Ashton. They havesuggested that our members shouldcontact their local Rotary Clubs torequest funding. If you feel this issomething you could get involved in, wewould be delighted to write the letter onyour behalf for you to send, so pleasejust get in touch. JanMather

Thanks −we had a ball!

Ashton-under-LyneRotary Club

Iwas diagnosed with Behçet’s disease in2008. Looking back, I had probably

had symptoms since I was a teenager,when I had regular episodes of mouthulcers which never cleared up quickly.After university, I started to have achingjoints with no obvious inflammation orexplanation. After the birth of my thirdchild in 1999, the mouth ulcers becameincreasingly persistent and I was referredto oral medicine. I was tested for aller-gies, Crohn’s disease and coeliac disease,but all tests were negative. Then I startedto develop genital ulcers, small at first butpainful. These went away, untreated, aftera week or so. Eventually, I developed oneulcer that refused to heal and after 3weeks I was referred to genitourinarymedicine. All their tests proved to benegative, but I started a short course ofsteroids which helped. Although mysymptoms were treated, no-one couldoffer any explanation of the cause.

Diagnosis and treatmentIn May 2008, I suddenly developedterrible pain in my wrists and fingers. Imade an appointment to see my GP thefollowing week. By Monday, I wasn’tsure which symptoms to mention first. Inow had painful genital and oralulceration along with the pain in myhands and wrists. I was sent to gynae-cology that day, where more tests weredone and an appointment made for me tosee a dermatologist a week later. Mysymptoms got worse, and I went back togynaecology 2 days later. The break-through came when the doctor, new to

me, asked if I had ever had any sore redlumps on my skin or unexplained jointpain. I was lucky to have found agynaecologist who had heard of Behçet’sdisease, although she had never seen it.She went off to consult a textbook, as shetold me, then came back to say shethought it was Behçet’s disease. I had towait another week for the diagnosis to beconfirmed by the dermatologist. She didhave experience of Behçet’s disease andwas wonderful in explaining things.

In 2009, I started to notice changes inmy vision and I was diagnosed withuveitis. My sight deteriorated suddenly,and I had to start steroids immediately inconjunction with immunosuppressants.Fortunately, my sight stabilised, but Iwas now suffering from painfularthralgia and overwhelming fatigue.

I then worked my way through avariety of immunosuppressants, whichall had to be stopped either because oftoxic reactions or because they didn’twork. Eventually, with the help of theSociety, I went to see Prof Moots and hisopinion helped to provide a case for meto start infliximab.

In contrast to many other patients’stories, I was able to start infliximabquite quickly through my rheuma-tologist. Funding for biological drugsstill has to be approved through our localHealth Trusts, the Scottish equivalent ofPCTs. I don’t know whether funding iseasier to get in Scotland or whether it isbecause I live in a university city wherea lot of expert opinion is centred.

I started infliximab in January 2012,

My Behçet’s diseasejourney

CASE HISTORY

The Society has been collecting case histories (people’s stories) to useselectively in the media.To encourage more members to offer theirs and tokeep you informed of patient journeys, we intend to include some of thesestories in the newsletter. If you would like to include something, please

contact the admin office on 0845 130 7328 or [email protected]



and my quality of life changed. My eyesremained stable and finally the arthralgiawas under control. The fatigue was alsomuch less of a problem. I thought mysymptoms were finally under control.

A setbackBefore I started infliximab, aroundChristmas, I had been vaguely aware ofsome changes in my sight but they didn’tseem to persist and my regular eyechecks seemed to be fine. However, byApril they had become so persistent thatI was scared to drive as my spatialperception seemed odd. Cars appearedto be approaching so closely thatcollision seemed inevitable. As myophthalmologist couldn’t offer anyobvious explanation, she sent me for anMRI just to be cautious.

Following the results of the MRI, Ihad to stop infliximab until the reasonsfor the changes seen on the scan could beexplained. The doctors were concernedas to whether the infliximab had causedthese changes, whether they could beattributed to another pre-existingcondition or whether they could be thestart of neuro-Behçet’s. After an anxious3 months, I restarted the infliximab. I amcurrently seeing a neuro-ophthalmologistand a neurologist, as well as my regularophthalmologist. My youngest daughtersummed it up beautifully: “Mum, are

there any ologies left that you haven’tvisited?” There are still questions to beresolved, but I am very lucky to havefour consultants who are all adopting avery cautious approach to my newsymptoms and who all communicatequickly and effectively with each other.

SupportWhen I started to write this, I lookedback at other patients’ journeys. Myexperiences have not been harrowing orlife-threatening. I have not had anyhospital admissions because of Behçet’sdisease. Admittedly, my journey hasbeen intensely frustrating at times andmy new symptoms have caused a lot ofanxiety, but I have been lucky to havehad wonderful support from my currentconsultants and my GP. Like manyothers, I have had support from friendsand my family. My family has had tolearn to live with the restrictions myillness has placed on them. Mum cannot,at present, be their on-call taxi service.Their support has been invaluable.

Finally, I would like to thank theBehçet’s Syndrome Society for all theirhelp, support and friendship. I will neverforget the relief of being introduced toother people with my disease and theirsubsequent support, however differentall our individual journeys have been.

Hazel McLachlan

Following recent training provided byWelfare Benefits and Work

regarding PIP (the replacement benefitto DLA), we thought we would providesome further information with regard tothe descriptors used for assessment andthe points needed to qualify for careand/or mobility at the standard orenhanced rate. There are only two ratesthat can be applied for, which arestandard and enhanced for both care andmobility.

Following an initial phone call totake details when first applying, you willthen be sent a form that will ask aboutyour ability to carry out certain tasks.There are 12 activity tasks in total − 10for the care element and two for mobility− and your answers will be assessed andscored relating to the descriptor that bestdescribes your ability (see below).

You will also need to write furtherinformation in the boxes provided toexplain how your condition affects yourability to carry out the task and howoften, aids used if applicable, etc. (Try tobe as detailed as possible and providemedical or supportive evidence wherepossible.)

List of activitiesassessed for care(daily living) and mobilityDaily living activities:

� Preparing food

� Taking nutrition

� Managing therapy or monitoring

a health condition

� Washing and bathing

� Managing toilet needs or

incontinence

� Dressing and undressing

� Communicating verbally

� Reading and understanding

signs, symbols and words

� Engaging with other people face

to face

� Making budgeting decisions

Mobility activities:

� Planning and following journeys

� Moving around

CASE HISTORY

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Royal College of Ophthalmologists Annual CongressOn 22 May, I was invited to present at the Royal College of Ophthalmologists’Annual Congress in Liverpool. Moorfields Eye Hospital had put together a sessionon Behçet’s disease, including a patient’s perspective which I presented; theNationally Commissioned Centres presented by Prof Phil Murray from theBirmingham Centre; manifestations of Behçet’s disease in the eyes by Prof MilesStanford from Guys and St Thomas’s; other manifestations associated withBehçet’s disease presented by Prof Anne Morgan, St James University Hospital inLeeds; and finally the treatment of Behçet’s disease presented by Prof Rob Moots.

I have given my presentation on Behçet’s disease from both a patient’s and aSociety perspective on several occasions before, but the venue at the ACCLiverpool (Arena and Conference Centre) was amazing. We were in the mainlecture theatre, which held around 500 people and was quite daunting. The venuewasn’t full as we were on first thing in the morning, but there were plenty ofpeople in the audience. It was a great opportunity to spread the word and raiseawareness of both Behçet’s disease and the new Centres. The feedback wereceived was very positive, and I thank all those involved for choosing to discussBehçet’s disease in such a powerful forum and also for my invitation. Jan Mather



“The outlook for eye disease inBehçet’s disease is improving.Approximately 80% of patientswill retain good vision in at

least one eye.”

To get standard rate for both care andmobility, you need to score a minimumof 8 points. To get the enhanced rate forboth care and mobility, you need to score12 points.

When answering the questions, tickthe box that best describes your ability tocarry out the activity most of the time(more than 50%); even if you think morethan one of the descriptors apply to youand you tick more than one box, you willonly receive one set of points peractivity on assessment. Therefore, youshould use this box to explain in detailhow your condition affects your abilityto carry out each task and relate it to thedescriptors where possible.

Most people will also be seen for aface-to-face assessment in which youcan explain this further.

How to view descriptorsFor a descriptor to apply to a claimant,the claimant must be able to reliablycomplete the activity as described in thedescriptor. Reliably means whether theycan do so:� Safely – in a manner unlikely to

cause harm to themselves or toanother person, either during orafter completion of the activity;

� To an acceptable standard;� Repeatedly – as often as is

reasonably required; and� In a reasonable time period – no

more than twice as long as themaximum period that a non-disabledperson would normally take tocomplete that activity.

RulesA scoring descriptor can apply toclaimants in an activity in which theirimpairment(s) affects their ability tocomplete an activity, at some stage of theday, on more than 50% of days in the

12-month period. The following rulesapply:� If one descriptor in an activity is

likely to apply on more than 50% ofthe days in the 12-month period,then that descriptor should bechosen.

� If more than one descriptor in anactivity is likely to apply on morethan 50% of the days in the period,then the descriptor chosen should bethe one which is the highest scoring.For example, if D applies on 100%of days and E on 70% of days, E isselected.

The impact of most health conditions anddisabilities can fluctuate, and Behçet’sdisease would fit into this category. It issuggested therefore that taking a view of

Personal Independence Payment(PIP) update

Moving around

� Can stand and then movemore than 200 metres, eitheraided or unaided (0 points)

� Can stand and then movemore than 50 metres but nomore than 200 metres,either aided or unaided(4 points)

� Can stand and then moveunaided more than20 metres but no morethan 50 metres (8 points)

� Can stand and then moveusing an aid or appliancemore than 20 metres but nomore than 50 metres(10 points)

� Can stand and then movemore than 1 metre but nomore than 20 metreseither aided or unaided(12 points)

� Cannot, either aided orunaided, stand or movemore than 1 metre (12 points)

Examples of activity descriptorsTaking nutrition

� Can take nutrition unaided (0 points)

� Needs (2 points):i. to use an aid or appliance to be able totake nutrition;or

ii. supervision to be able to take nutrition;or

iii. assistance to be able to cut up food

� Needs a therapeutic source to be able totake nutrition (2 points)

� Needs prompting to be able to takenutrition (4 points)

� Needs assistance to be able to manage atherapeutic source to take nutrition(6 points)

� Cannot convey food and drink to theirmouth and needs another person to do so(10 points)

For example, a claimant with severe mouthulcers may physically be able to prepare foodand feed him/herself, but due to severe painand discomfort caused by eating and drinkingat these times may need prompting fromanother person to carry out the task (could beassessed at 4 points).

ability over a longer period of time helpsto iron out fluctuations and presents amore coherent picture of disablingeffects. The descriptor choice should bebased on consideration over a 12-monthperiod.

I hope this information gives aclearer picture as to what to expect withregard to the application and assessmentprocess.

Janine DaviesSupportWorker, Birmingham

If you want to see all the directivesand examples you can find them at

www.dwp.gov.uk/publications/specialist-guides/pip-toolkit/about-pip/

under Assessment criteria publishedApril 2013.

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Having Behçet’s disease can feelisolating and frustrating. Explain-

ing the disease, what it is and how itaffects you, is difficult, especially as it isa rare disease that no one you know hasever heard of. The object of RareDisease Day is to break down thesebarriers, to raise awareness, and tocampaign to politicians. Jacklyn Doidgeand I were invited by the Society toattend a Rare Disease Day Reception atthe Senedd, the home of the WelshAssembly Government, on 20 February.We met up beforehand for a quickcoffee, as we had never met before. Wehad the opportunity to circulate beforethe meeting started and chat to differentpeople with other rare diseases.

The meeting was opened by MrMark Drakeford AM. The first speaker,Mr Alastair Kent OBE, Chair of RareDisease UK, started by stating that NHSWales can, and does, deliver world classservices in healthcare. Unfortunately,one in four patients with a rare diseasewill have to visit 20 or more differentdoctors before a diagnosis is made. Oncea diagnosis has been achieved, 60% ofpatients have to visit at least threedifferent doctors to manage theircondition. This can result in poorcommunication and a lack of overallresponsibility for the patient, which canbe frustrating and delay the start oftreatment.

Living with Behçet’s diseasein Wales

Jacklyn and I both have Behçet’s diseaseand we both live in Wales − Jacklyn inLlanrumney and myself in Caerphilly. I

was diagnosed when I was 23 years old.I was living in Manchester at the timeand was cared for by an immunologistwho specialised in Behçet’s disease. Iwas seen on a regular basis, and if I hada problem I only had to page thespecialist and she would ring me back.They set up a monthly multidisciplinaryBehçet’s disease clinic which I alsoattended. Moving to Cardiff meantleaving this specialist service behind. Ihaven’t seen a single Behçet’s diseasespecialist in Cardiff, or anywhere inWales, since moving here in 2006. Whenmy husband and I discussed the prospectof starting a family, I was referred to aspecialist in London as there were noobstetricians in Wales who specialised inpregnancy in Behçet’s disease.

Jacklyn, who was diagnosed withBehçet’s disease 12 years ago, was caredfor in Bristol by a specialist recom-mended by the Society for 8 years. Shehad an excellent relationship with him,and trusted his decisions. Suddenly, andunexpectedly, the funding for her to goto Bristol was taken away, and she wastold she had to attend the UniversityHospital of Wales. Jacklyn has had tostart from scratch with her newconsultant and is working her way backup the medication ladder. She wentthrough the process of being referred foranti-TNF treatment but was told she didnot meet the criteria; no further explan-ation or course of treatment was offered.She has lost confidence in the serviceand does not feel valued or listened to.

So we both know what it is to receivespecialist Behçet’s disease care in Eng-land, to feel valued, understood andsupported. We are now both under thesame rheumatologist, at the same hosp-ital. I have been on infliximab since 2007,whereas Jacklyn is on several immuno-suppressant medications. Neither of us isreceiving equal services to our Englishneighbours, nor are we receivingspecialist care.

The fact that services across the

border in England are so different fromthose on offer in Wales is a massive boneof contention, and a little ironic con-sidering the theme for Rare Disease Dayis “Rare Disorders without Borders”.The Welsh Assembly Government optedout of developing a Centre for Excell-ence, as they felt they were alreadyproviding adequate services for Behçet’sdisease in Wales. I do wonder who theyconsulted when they came to thisdecision. It certainly wasn’t the peoplewith Behçet’s disease living in Wales.

An opportunityThe Chief Medical Officer, Dr RuthHussey OBE, was at the reception, andwe sought her out to discuss the lack ofspecialist care and the frustrationJacklyn felt when her funding ceasedand her specialist care was removed. Weexplained that we were prepared totravel to receive specialist care. We alsospoke to her, as well as representativesfrom Rare Disease UK and GeneticAlliance UK, about the Centres ofExcellence in England and how we areunable to access these services, becausewe live in Wales and it would cost theNHS Wales financially to refer us.

Rare Disease Day gave us theopportunity to have a voice and to feelthat we were being listened to. Weunderstand that we cannot changeservices for Behçet’s disease patientsovernight, but, hopefully, with anongoing campaign from patients livingin Wales, and the support of the Society,we can prove that we deserve specialistservices just as much as those livingacross the border. If you live in Walesand want to campaign for a Centre ofExcellence here, or simply wish toreceive better specialist care, pleasecontact your local AM, England appearsto be constantly improving its serviceswhereas Wales has come to a standstill.We all deserve to be treated equally.

Reception in WalesRARE DISEASE DAY

Rachael Humphreys



Iattended the Rare Disease UK Re-ception at the Scottish Parliament on

26 February, along with HazelMcLachlan, another member of theScottish group. Rare Disease UK is thenational alliance for people with rarediseases and their carers. The aim of RareDisease Day was to raise awareness ofrare diseases as they have generally notbeen considered to be a health problem inthe UK. This is partly due to the mistakenbelief that rare diseases affect a smallnumber of people. In fact, rare diseasesaffect 3.5 million people across the UK.

Speakers presenting at the reception,included Alex Neill, the Scottish Sec-retary for Health and Well-being;Alastair Kent OBE, Chair of RareDisease UK; and several guest speakerswho outlined their own stories of copingwith, or caring for someone with, a raredisease. These highlighted some of thedifficulties that people have faced inobtaining a diagnosis. Another issueraised was lack of coordination of care,as treatment can be delivered bydifferent specialists in multiple loc-ations. There is no doubt that this strikesa chord with those of us with Behçet’sdisease. Another important issue is thatpeople in Scotland are experiencingdifficulties in accessing specific medi-cines for rare diseases, as this may not befunded by individual health boards. Thisscenario is also familiar to several of uswith Behçet’s disease in Scotland.

Living with a rare diseasein Scotland

A further aim of Rare Disease Day wasthe launch of a publication by RareDisease UK entitled Experiences of RareDiseases: Patients and Families inScotland, which outlines the results of asurvey of patients and families livingwith rare diseases. The purpose was tofind out more about the experiences ofpeople in Scotland living with a raredisease and to identify some of the

Reception in ScotlandRARE DISEASE DAY

concerns and problems that they face.The conclusion was that a need exists fora strategy for rare diseases in Scotland toensure that patients with rare conditionscan access equitable, high quality care,information and support in a timelymanner while also making moreefficient use of NHS resources. Thereport can be downloaded at www.raredisease.org.uk/documents/Research%20Report/rduk-scotland-survey-report.pdf.

Alex Neill asserted that the ScottishGovernment was committed tosupporting those with rare diseases in

Scotland, but also recognised that theincreasing health problems of the Scottishpopulation and the impact of longevitywere taking its toll on funding the HealthService in Scotland. If the ScottishGovernment is to honour its pledge, thenit needs to act on these recommendationsand make it easier for patients with rarediseases such as Behçet’s disease toaccess medication and resources that areavailable elsewhere in the UK so that“rare diseases without borders” becomesa reality. Catherine O’Hara

Rare Disease Day StallBirmingham Centre of ExcellenceOn Rare Disease Day, we decided to tryand raise some money for the Societyand raise awareness of Behçet’s diseaseat the same time. We sold Easter giftsand books along with cakepops andcupcakes, made by Lynn’s daughter-in-law Jenny, who refused any payment forthem. On our first attempt at fundraising,we raised £85 and had sold out of cakesby lunch time.

Lots of people, both staff and patients,were interested in knowing aboutBehçet’s disease, which we werepleased about. We made it into thelocal papers (Birmingham Mail), againraising awareness.

We have decided to try and do a stallonce a month, now knowing that weneed more items for sale. We are alsogoing to try a lucky dip and a raffle tosee if these are popular. Any othersuggestions or donations for our rafflewould be very welcome, as we are newto this and would like to try variousdifferent things so that people don’t getbored with our stall. The Society willpass on any suggestions to one of us.

March 25th

At our second fundraising event we setup at 9am, ready to sell cakes, booksand Easter gifts again. This time we alsohad a lucky dip, with prizes of cuddlytoys, wine and special little cupcakes,made in their own little cups andsaucers, which were really cute. Thisidea proved popular, so we will continue

to do luckydips on futurestalls. All the gifts weredonated, which meantpure profit. Thank youto all those people whodonated. Thanks alsoto Chris, who joined uson this occasion.

By 12.30pm we had again runout of cakes, so next time we will haveeven more! I have already spoken toJenny to say that we will be keeping herbusy, and she has replied saying thatshe is happy to be of help and willcontinue to bake for us for as long aswe want. So a big thank you to you,Jenny!

We also held a raffle of an Easter cake,also made by Jenny, which was won byMarion Butler, the admin manager atthe hospital, who then kindly donated itto the nurses in the Emergency Eye Dept.

At the end of our day we had cleared£160 profit, which was amazing. Wewere there for 5½ hours in total, so weare really happy with our efforts.

We think we may have hit upon a goodfundraising idea and will continue tohold stalls for as long as we possiblycan. Maybe you could follow our lead,get together with some friends (askpermission from the medical team) andset up a stall at the hospital you attend?

Lynn Barnes, Anisha Zaminand Janine Davies



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. June 2013

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Support group contacts

Area Email contactCambridge [email protected] [email protected] Ireland [email protected] Nth Hants [email protected]

Area Email contactLiverpool area [email protected] area [email protected] [email protected] [email protected] [email protected]

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.

Those of you who regularlyvisit our website at

www.behcets.org.uk will have seenthe new look that has recently beenlaunched. For those of you whohaven’t been recently, I encourageyou to do so. Not only is the siteeasier to use, but we have alsoincorporated direct links to the newCentres of Excellence in London,Liverpool and Birmingham. All ofthe factsheets have been updatedand put into a uniform format, andthe home page incorporates newsitems that are updated regularly. Sodon’t just visit once – check regularly tosee what information is being discussed.We would also like to incorporate yourideas and information, so don’t hesitateto contact the office to discuss them.

Part of the National Commissioningremit is to encourage more support

groups around the country, and to thisend we have new groups planned forLeicester, Gloucester, London and SouthWales. There is also talk of a newLiverpool group to cover a larger area.These groups may be started by thesupport workers, but they belong to thepatients and carers. So while we may getthem off the ground with a first meeting,it is important that the members have asay in where they meet, how often andwhat the agenda is. Groups may follow a

Support group update

There are masses of pages ofinformation, and the new layout(designed by STW) should be quicker toaccess and more easily viewed. Forfriends and family, the Join now andDonate buttons might be of interest.

Each of the support workers isgoing to blog about their work eachmonth, and support groups willhopefully have a higher profile. Weare able to add and remove pagesmuch more easily than in the past,and work on the fundraising sectionwill also support people under-taking events on our behalf. Pleasesend us your ideas or updates. Weget lovely comments from patientsall around the world saying howhelpful the site is. We hope that ourmembers feel that is the case too,

and that this new format will mean thatyou visit more often and help us to makeit “the place” to check information onBehçet’s disease.

Chris Phillips

social calendar, meeting for drinks or ameal and having some fun; others maywant a medical talk or a talk on alternativetherapy. We are also conscious of cateringfor the carers, an often forgotten groupwhose needs differ from those of patientsbut who are also important.

We already have groups up andrunning in Scotland, Birmingham, EastAnglia and Surrey, as well as the longestrunning group in Liverpool. On the list arealso Devon and Portsmouth and a smallgroup in Northern Ireland. The contactemails are below, or you can contact the

office for details or to discuss an area notcovered. We have guidelines for runninggroups and experienced members whocan help. Those who attend meetings(however infrequently) always say theyhelp, even if it is just a chat with someonewho understands or a discussion ontherapy or ideas for coping with pain. Thenew centres are a good place to join agroup, and we can help to start onewherever there are sufficient members, sodo not hesitate to contact the office forinformation about any of the above or tooffer your services. Chris Phillips

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