STARS Issue 20, January 2004 by www.heartrhythmalliance.org

WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION IN SYNCOPES AND REFLEX ANOXIC SEIZURES

Letter from Trudie, STARS’ CEO Life really has been hectic in the STARS office this last six months. All the plans are coming together for the Arrhythmia Awareness Week. We are working in conjunction with SADS UK, CMA and BCPA and supported by Medtronic, to change the current diagnosis and treatments of arrhythmias. So what is an arrhythmia and why is STARS involved? An arrhythmia is a heart beat which is too fast, too slow or irregular. Syncope & RAS are types of arrhythmia - hence why this week is so important to us. Sir Roger Moore, our Patron, has kindly agreed to support our campaign and to attend the awareness launch at the House of Commons on 12th May 2004. Many of you have been busy writing to your MP's informing them of the campaign and highlighting your personal experience. This has paid dividends - over 70 MPs have agreed to attend the launch. Melanie Johnson, the Health Minister, has SYNCOPE (pron: sin-co-pee) is a result of been inundated with letters campaigning to include treatment and care of the temporary cutting off of the supply of oxygenated blood to the brain. The arrhythmia's into the National Service Framework. We have even received mechanism of the syncope in susceptible a letter of support from the Prime Minister, Tony Blair! individuals includes reflex cardiac standSTARS has really reached high places in the last six months! We must still (always reversible) commonly following a surprising bump to the head or else- not give up now - so please continue to write to your MP (I can let you where. Recurrent syncope is perhaps one have a draft letter which you can then personalise), or hold a fund raising of the most challenging and, at the same event. We have posters, leaflets, stickers and media packs to help you. If time, most frustrating problems that is encountered in clinical practice you would be prepared to speak to the media please let me know. Most importantly if you would like to join us at Westminster get in touch NOW. OfREFLEX ANOXIC SEIZURES occur ficial Invitations are limited. mainly in young children but can occur at any age. The sudden shock of pain, howIn March another dream was fulfilled - doctors from various disever slight, or indeed any unexpected ciplines met to form the STARS Medical Advisory Committee. We now have stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the cardiologists, neurologists, psychologists, GPs, researchers, paediatricians complexion to become deathly white, the and geriatricians from the UK and Europe meeting to discuss, debate and jaw to clench and the body to stiffen often plan better diagnosis, treatments and quality of life for those with syncope with legs and arms jerking. After 30 seconds or so the body relaxes and the heart and RAS. I hope to report in more detail in the next newsletter. It really is and breathing restart. The sufferer may an exciting time and together we will make a difference. remain unconscious for one or two minFinally - remember if you have a question, need a shoulder to cry utes or for well over an hour. RAS is often misdiagnosed as breath-holding or more on or just a listening ear, you can call free on 0800 0286362, write or eseriously as epilepsy. mail 24/7.

Freephone 0800 0286362

www.stars.org.uk

trudie@stars.org.uk PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

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Everyone who works to help the STARS charity does so on a voluntary basis. We are so grateful to everyone who gives their time to us, and we are always looking for more people to help raise funds or offer any other skills they may have. STARS has held three volunteer days, where we offer training to people wanting to get involved. It’s free to come along. People who have attended our days have said how much they have got out of it. Our second volunteer day was again led by STARS Trustee, Susan Broatch, who threw everyone into team activities—using K-Nex, to get teams to build a star and then describe how our star was like us. This challenge was fine if you could work out how to fix it together in the first place! The volunteer days are always fun and there is lots of laughter. You have an opportunity to meet other STARS volunteers as well as find others like you either with a family member with RAS or Syncope or a who is a sufferer themselves. It’s not necessary to devote a great deal of time to fundraising—everyone just does what they can, when they can. Sometimes it’s not possible to do anything at all for months, but then you find you can sell some Christmas cards (which we’re planning to repeat with a larger range this year). So you see, being a volunteer isn’t about giving up your life for STARS. Even if you’ve never raised a penny for charity before, coming to one of our volunteer days will be a good experience. Everyone is friendly and welcoming and meeting others like you means you are widening your own support network. Whatever time you may have available to help, we would love to see you. If you’re interested in coming along, call 0800 0286362, or email Trudie@stars.org.uk. See you there!

Volunteers take a break at STARS’ second Training Day—Will you join our growing volunteer group?

In Memoriam

We would like to remember Mrs Audrey Evans, who supported STARS for many years. It was Mrs Evans’ wish that instead of flowers at her funeral, donations should be made to the STARS charity. She will greatly be missed. 4

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At our most recent Volunteer Training Day, those attending discovered just what it takes to get leaflets, newsletters and information out to you. As well as receiving training that day, volunteers helped lighten the load by stamping and preparing envelopes for this very newsletter to reach you. It was worked out that 30 man hours were used up that afternoon– and the job still wasn’t completed! On average, 4,000 plus newsletters are sent out and it is estimated that when the newsletters are received from the printers, put into envelopes, stamped and posted, a further 24 man hours will have been taken up. It was a very practical way of helping and illustrated just what a big job it is to keep members in touch and up to date.

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STARS recommends that people with RAS and Syncopes should consider joining MedicAlert®. MedicAlert® provides a bracelet or necklet giving life-saving identification system for people with hidden medical conditions and allergies. Each Emblem is engraved with the wearer’s vital details, a personal ID number and a 24 hour telephone number that can access their details from anywhere in the world. To join MedicAlert® call freephone 0800 581420, or download the form from their website, www.medicalert.org.uk. MedicAlert® Emblem prices start from £19.95 plus annual subscription of £15. There may be help available from Medic Alert® for those otherwise unable to afford membership. Details about this are only available from MedicAlert® A suggested wording for your engraving is:

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Sufferer's name; Reflex Anoxic Seizures OR Vasovagal Syncope; Care with anaesthesia; Call for essential details. For those with pacemakers they should also include: Pacemaker in situ.

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Website Brings Help and Hope !

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Supportive School Makes Life Easier When my two older children first started school we looked at which were the best schools academically and within the catchment areas where we lived, without a real thought of any medical issues. Gemma was diagnosed with reflex anoxic seizures in 1999 and all our priorities changed. When it came to her starting school we felt so nervous. I went around a lot of schools and spent a lot of time talking to staff to see if they were the school I felt most at ease with. Abbey C of E infants and Nursery School was one of the last ones I visited on someone else’s recommendation; we have never looked back.

anything for awareness week her response was immediate. They held a non uniform day with all the children dressing up as stars and held a talent show for any would be stars willing to take to the stage. Lots did, it was a wonderful day and even the staff dressed up and we raised £75. In the summer the school entered in the carnival, winning the walker’s category and the largest walker’s category

with a prize of £100, which Mrs Harold very kindly donated to STARS. We were invited to the Mayor’s Parlour where Gem was presented with the cheque on behalf of STARS, by Mr Robin Thomas Chairman of Nuneaton Carnival. We hope everyone affected by this, or any other medical condition is as lucky as we feel to find such a caring and helpful school as we have. M. Cartern, Nuneaton

The School is wonderful. I was asked by the headmistress, Mrs Harold to go in and speak to all the lunchtime supervisors, and then had another meeting with every member of staff to explain about Gemma’s condition and how best to deal with it should anything happen. They invited Gemma to help them in the first aid room for 10 minutes over a few weeks to get her used to the staff and the room should anything happen. So far, fingers crossed, nothing has and Gemma is very happy there. Mrs Harold has been very supportive and when I asked her if she would consider doing

Robin Thomas, Chairman of Nuneaton Carnival presenting a cheque for £100 to Gemma for STARS Awareness Week.

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! STARS patron, Sir Roger Moore is backing the Arrhythmia Awareness Week campaign. He’s received a message of support from the Prime Minister, Tony Blair for the AAAW campaign. Sir Roger will be helping to launch the campaign at the Houses of Parliament: “I experienced a syncopal episode, a form of arrhythmia, when on stage in New York. I was fortunate to be fitted with a pacemaker that allows me to continue to live life to the full. Unfortunately in the UK I may not have received this treatment as quickly, if at all. “I certainly support this campaign and feel it is essential for every individual suffering an arrhythmia in the UK to receive as speedy a diagnosis and as effective treatment as I did.”

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ArrhythmiA An arrhythmia is an abnormality of the heartbeat. The heart could beat too fast or too slow, or beat irregularly. Syncope is a type of arrhythmia.

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..MEPs and MPs have written in support of the Arrhythmia Awareness Campaign.. They’re asking Health Minister, Melanie Johnson, to include targets for the diagnosis and treatment of arrhythmia.. This will help prevent tragic deaths due to fatal cardiac arrhythmia… It will also improve the lives of those who are adversely impacted..

The Government and the Department of Health are aware of the campaign.. Dr Roger Boyle, National Director for Heart Disease is supporting the Parliamentary Launch of Arrhythmia Awareness Week .. He’ll be presenting details at the event about the DoH’s work programme and how this has influenced the management of arrhythmia and what still needs to be done in this area...

..The Department of Health says arrhythmia, its management and how it might relate to the National Service Framework is currently under consideration...

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Awareness Week … Write To Your MP ... *+ %

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I would like to support the AAAW campaign Name: Address:

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Thank you for your support. With YOUR help we WILL make a difference

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Please post this form to STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

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SUBSCRIPTIONS AND DONATIONS

Your subscriptions are what keep STARS up and running. Please renew your subscription to STARS for 2004. Subscriptions are a minimum of £10/$20/ 20 a year. Your subs help to fund the STARS Newsletter. It is vitally important that you remember to renew your subscription. Without your help we would not be able to provide our essential service to the families of RAS and Syncope sufferers. Thank you.

STANDING ORDER AUTHORITY

STARS ANNUAL SUBSCRIPTION Name

If you wish to set up a standing order, you may use the form below and hand in or send to your bank/ building society.

Address: Postcode Telephone E-mail

My Bank/Building Soc Address

To cover the cost of my subscription and newsletter:

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I have arranged a monthly standing order from my Bank / Building Society Account to STARS of £______ .(min £2 )

Please pay:

I have arranged an annual standing order from my Bank / Building Society Account to STARS of £ _______ (min £10 ).

Lloyds TSB Plc, 22 Bridge Street, Stratford-Upon-Avon, CV37 6AG STARS 02423406 30-98-26

To credit: Acc No: Sort Code

I enclose a cheque/postal order payable to STARS for my annual subscription of £ __________(min £10 )

The sum of £ _______ on __ /___ /2003 Then monthly (min £2) or annually (min £10) and thereafter on the same date until further notice.

I have paid by paypal via the STARS web site www.stars.org.uk Please post this form to: STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

Name My account number My bank sort code My signature Date

GIFT AID DECLARATION Name of taxpayer:

FUNDRAISING

Address:

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I enclose a total cheque for £_______ made payable to STARS.

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Please send me ____ packs of 6 key fobs. I enclose a donation of £9 per pack. Please send me ____ packs of 10 pin badges. I enclose a £10 donation per pack.

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STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

"After many months of attacks, my daughter Tabatha, now 3, has finally got a diagnosis of RAS. Since then I have had telephone and email support and plenty of reading material from STARS. I am very thankful to the charity for all the questions answered, especially when professionals sometimes seemed less able to help. As a thank you, with the help of the choirs I sing with in Weymouth, we managed to raise £186.73 for STARS. Again many thanks.” Amanda Hathaway.

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“Classic Case” of Breathholding is really RAS It all began in the Church Hall in January last year at coffee time after the service.

est thing. Just to reassure me she said she would refer Victoria to a specialist.

Victoria, who was then 2½, fell on the floor, banging her head badly. I ran over and picked her up and saw she was holding a biscuit in her hand. She was turning blue around her mouth and was losing consciousness. I assumed she was choking on the biscuit. I panicked but knowing that several people in the hall were in the medical profession I shouted for help and a nurse came to our rescue. She did all the right things to clear what we thought was a choking incident. She turned Vicky over and patted her sharply on the back. On turning her back she was pinking up and gaining consciousness again. I was very shocked afterwards. Vicky was quiet and clingy but after 10 minutes or so was up and running around. I relived the incident for many days but could not quite add it all up as we never found the lump of biscuit that I supposed she was choking on.

The consultant at the Chiltern Hospital, Great Missenden took a full and detailed medical history and examined Victoria. He listened carefully to the descriptions of each attack and diagnosed RAS. He was wonderful – calm, informative, reassuring and very direct. He has children of his own and had a wonderful way with Vicky. He also picked up a heart murmur that had not been discovered before. Through him, we were encouraged to contact STARS and so we had immediate support through Trudie and a wealth of information from the STARS website. We were worried but were able to remain calm and optimistic because we could see there was information and support. This is a rare condition but we were not the only ones to be experiencing it. This year was STARS 10th anniversary. In the summer Trudie sent us the celebration newsletter. I read it from cover to cover. Two things struck me immediately. Firstly, Victoria had received a very quick diagnosis. Many of the articles in the newsletter showed the difficulty that some parents had had in getting the correct diagnosis – months and even years. I was struck at how fantastic a job Trudie, through STARS, was doing in educating and informing the medical profession of this condition which so often in the past has been misdiagnosed as epilepsy. Our paediatric doctor was fully informed.

In March, Vicky fell backward off her brother’s bed on to a pile of Lego. She screamed loudly but then seemed to go floppy, she went blue around the mouth and rolled her eyes upwards. She was losing consciousness. I shouted for my son to call an ambulance but within 30 seconds she had pinked up again and was recovering. I could not understand what was making her go unconscious. It was a third incident with the same symptoms that made me seek a medical opinion. In June, Vicky fell on the dance floor at a wedding – turned blue around the mouth, eyes rolled up and she went floppy. She recovered within a minute but was very tired and miserable afterwards.

The second thing that struck me was how much variation in the condition there seemed to be. The children in the newsletter stories went fully unconscious for several minutes even hours. The children were often very tired after an attack and slept for a long time. And attacks could be several times a day. Our experience has not been so extreme. Our Victoria has never gone fully unconscious, only floppy and blue around the lips. Victoria does not need to go to sleep after an attack but is slow and lethargic for a short time. Surprisingly not all unexpected hard falls set off attacks. There have been several weeks between attacks and I can “manage” an attack now so that we have only had “near misses”. I hold Victoria close after an unexpected, hard fall, talk to her reassuringly and rub her back. This all seems to calm her quickly.

The GP listened sympathetically and diagnosed a “classic” case of breath-holding. I was not at all satisfied with this diagnosis. I am a laid back third time mum, not prone to rushing to a doctor at the slight-

Victoria is a happy normal 3 year old. We are lucky that she has a mild form of RAS and it has not disrupted her or our lives to any great extent. We have informed all who look after her; grandparents, siblings and nursery that she has this condition. They are briefed in what they must do in an attack. But apart from that we try to put it in the background and allow her to have a normal life.

Margot Suter

Sunday, 14th September 2003, dawned bright and sunny for the 6th Flora Light Challenge For Women 5km fun run. I had been encouraged by a good friend to take part and in turn, persuaded my thirteen-year-old daughter, Jo, to suffer with me. Along with two husbands, five siblings and 22,000 other runners of all ages, we gathered for the start in the waiting area of London’s Hyde Park; a sea of colour as various charities’ balloons flew above the groups of women stretching and pulling their muscles into their warm up routines. It wasn’t long before we were called into position at the crowded start line. Unable to see the few celebrities at the front, we were assured by the unseen voice that the race had indeed been started by Paula Radcliffe, fifteen minutes before we got to the starting line ourselves. Eventually getting a rhythm going, with the three of us forming a snake that weaved in and out of the other runners, we ran through the finish forty-five minutes later. With so many women we had encountered many hold-ups with congestion at the bends, not quite up to Paula’s standard, but quite good enough for me. Our husbands had been advised to watch us start the race and then position our support team along the final stretch, to cheer us on if we seemed to be flagging. Unbeknown to us they’d decided that, as we’d obviously take ages, they’d

have plenty of time go and get a drink and ice creams. It was only when they started to see people, red faced and panting surrounding them, that they felt they might have cut it a bit fine. Needless to say, our triumphant sprint through the finishing line was witnessed not by our nearest and dearest, but by someone else’s! As with all good gatherings, we were rewarded with a goodie bag and each now proudly possess a medal as testimony to our achievement. Jo was running for STARS, in support of her sister Ellie. Thankfully, Ellie seems to be outgrowing her condition and has been attack free for the last four years, but I will never be able to put RAS completely out of my mind, forever indebted to Trudie for her calm reassurance and knowledge, the evening she first answered my anxious phone call. There often seems to be too little time in our busy lives to do something for charity. The Flora Light Women’s Challenge is fun, healthy and something that anyone can do, whatever your fitness level. There is also an equivalent run in Birmingham, but the events are often oversubscribed so, if you want to take up the challenge, I’d get your application form in early…but not before mine. Teresa Hamilton 15

Toddler’s Brave Rescue Call Helps Syncope Mum I first began to have unexplained blackouts when I was expecting my second child, in February 2002. Doctors just put it down to the fact that I was pregnant. The blackouts started to be at least once, sometimes twice a day and all I seemed to want to do was sleep. I couldn’t care for myself never mind my little boy who was, at the time, under 2. I found myself in and out of hospital longing for the day my baby was to be born, not for joy, but for relief. My daughter was born in August the same year and things got better. The blackouts had stopped, or at least I thought they had. But at work, in May 2003, I felt symptoms I’d felt before and I knew I was about to pass out. After that day it all started again. I was in and out

of hospital and became too weak and tired to get out of bed. I now know these were pre-syncopal attacks. One Saturday, my husband was at work and I was at home alone with my two children. I remember going upstairs with Jake, who was almost three and starting to feel unwell. Before I could seek help I blacked out.

away, while Janine kept Jake on the phone. Jake calmly stayed on the phone and kept checking both his sister and myself to make sure we were all right until my mother arrived and took over. I am very proud of Jake and am thankful for his calmness and quick thinking. If Jake had not sought help, I don’t know what might have happened to my daughter.

Jake new exactly what to do, he reached for the telephone and pressed the redial button. My sister, Janine, answered the phone and heard a little voice saying ‘’Mammy isn’t very well’’. Janine recognised that it was Jake and asked who was at home. Jake calmly told her that Mammy had fallen down and baby Lilli was alone downstairs. Janine’s husband raced to my mother’s house, two doors

I’m now 23 and am being treated in the Falls and Syncope Unit in the RVI Newcastle, where I was diagnosed with Vasovagal Syncope. I am now on a medication which is helping with the condition and has reduced the amount of attacks I suffer. Natalia Anderson, Chester-le-street, Co Durham.

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STARS’ Beacon Recognised Trudie Lobban was Highly Commended in the Start ups category of the 2003 Beacon Prize Awards for her "outstanding contribution to charitable and social causes". This award honours those individuals who have used their own resources to launch a new initiative to meet a specific social or charitable need, and have created a sustainable future independent of the founder' s continued involvement.

Beacon says it believes that by highlighting the achievements of the prize winners and showcasing innovation and best practice in philanthropy, others will be inspired and encouraged to make their own contribution.

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UK self help groups are an invaluable source of information as acknowledged by the BMJ (British Medical Journal). Steve and Julie Garrill have put together an up-to-date directory of national self help groups and support organisations and they have now made this freely available on the internet at:

www.ukselfhelp.info.

The site is simple and easy to use and has the telephone numbers and website addresses of over

800 national groups who together provide advice and support for over 2,000 conditions. Please visit the site and pass on the address to friends and colleagues. 18

INFORMATION

Survey

Name of Contact & Title: (optional) I am a: (mark box)

Sufferer other: (please state)

Relative

Friend

Professional

Address:

Telephone Number:

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For statistical and funding White: purposes only, would you please indicate in the ap- Mixed propriate boxes:

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What information have you received from us?

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Information Survey

continued

Did you find this information Yes easy to understand? No

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Would you be interested in becoming a STARS volunteer?

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Would you be prepared to speak Yes to the media on behalf of STARS? No

How did you hear about STARS?

Medical Professional Other: (please specify)

attending a Conference run by STARS? fundraise on behalf of STARS?

Daytime Evening

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Any further comments or do you have suggestions for future leaflets?

Please complete your contact details if you would like a reply.

Thank you for taking the time to complete this form. Please return to:

STARS, PO Box 175, Stratford upon Avon, Warwickshire, CV37 8YD. Or you can fax it to: 01789 450682 Alternatively, you can download this form from the STARS website:

www.stars.org.uk.

Please complete as an attachment and e-mail the completed survey to

trudie@stars.org.uk 20