e Th uts o k c Bla rust T
SEPTEMBER 2010: ISSUE 33
WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES
STARS PATIENTS DAY Sunday 3rd October 2010 Don’t miss out on what promises to be one of the most enlightening Patient Days we have held. Dr Blair Grubb and Professor Christopher Mathias will be presenting topics covering POTS and the Autonomic Clinic. This is an opportunity that will not happen again for a long time. For full agenda and registration form, turn to back page.
Dr Blair Grubb, Professor of Medicine & Paediatrics Trudie Lobban, Founder & CEO of STARS
STARS SUPPORTS ‘KNOW YOUR PULSE’ CAMPAIGN 2010
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TARS joined Arrhythmia Alliance in June to promote the ongoing ‘Know Your Pulse’ campaign. This is a crusade to make pulse checks a routine test when visiting your GP. We should all be aware of our pulse and be able to recognise any irregular heart rhythm disturbances that may cause blackouts. The ‘Know Your Pulse’ campaign has taken awareness of cardiac arrhythmias to a new level. More than 100,000 pulse check cards have been distributed and STARS members delivered packs of posters and leaflets to their GP surgeries, schools and community centres, raising public, patient and medical awareness of this simple test which can detect blackouts. Continued on page 2.
Please help us achieve our goal. Are you given a pulse check when you visit your GP? www.knowyourpulse.org
KEY SYNCOPE FACTS • 120,000 people experience unexplained loss of consciousness each year. • 30 per cent of adults and 39 per cent of children are misdiagnosed with epilepsy when in fact they have a heart rhythm disorder. • 10 per cent of falls in the elderly are due to syncope. • More than 2 million people have an arrhythmia (diagnosed and undiagnosed).
Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Dr Wouter WIELING, Sir Roger MOORE, TWIGGY Lawson, John BURTON RACE, Sir Elton JOHN www.stars.org.uk Registered Charity No: 1084898 info@stars.org.uk
ArrhythmiA Awareness Week (AAAW) 7th – 13th June 2010
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ith over 430 individual supporters and more than 2500 events across the UK, this year’s Arrhythmia Awareness Week has proved the most successful awareness event to date. Medical professionals took to the streets, supermarkets and schools to run ‘Cardiac Cafés’. Thousands of people were shown how to be more in touch with their heart health.
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STARS wants to thank everybody who took part in AAAW 2010.
We put a poster up in my local GP surgery and I left pulse check cards on the seats for patients to read.
Here are a couple of highlights from the week…
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Jane Bateson, Elgin I took posters and STARS information to the special Spynie dental practice in Elgin. It is a great place to reach people with a variety of problems, both for children and adults. They were more than happy to display the posters. The surgery is also a main meeting place for nurses and docs so was a good place to advertise STARS.
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Cheryl McNair, Dunbartonshire We had over 200 blood pressure and pulse checks done over the week and many of these people have been referred on to the charity for more information on associated conditions. We also had a group called ‘eat up’ who helped us to give customers advice on healthy eating, and also information to encourage people to stop smoking. In addition to this, a vast majority of people have been referred to their GP with abnormal BP readings and heart rates after having their checks. It has been such a success for us that we have anticipated doing further checks for members of the public on a three monthly basis.
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Kathleen Williams, Conwy
” You can still raise awareness; hold a display, distribute posters and leaflets, and take part in lobbying activities. To find out more and to order your Awareness Pack(s) visit:
www.aaaw.org.uk or contact Pippa:
pippa@stars.org.uk
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How can you get involved? There is still much to be done!!! Many people are unaware that pulse checks are an effective method of detecting potential heart rhythm problems early, and in turn improve the chances of quick diagnosis and treatment; and many more are unsure of how to check their pulse correctly, and when pulse rates may need further investigation. The ‘Know Your Pulse’ campaign aims to address the number of cardiac arrhythmias that lie undetected. This is why STARS is supporting Arrhythmia Alliance to promote routine procedural pulse checks in GP surgeries. For more information please visit: www.knowyourpulse.org
info@stars.org.uk
National Syncope Forum, Royal Society of Medicine
14th July 2010
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n Wednesday 14th July, international syncope experts from across the globe came together for the first National Syncope Forum. The forum was a demonstration of the national initiative by medical professionals to improve syncope services across the UK.
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Transient loss of consciousness is syncope when there is a transient lack of blood supply, characterised by rapid onset, short duration and spontaneous recovery.
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counter-pressure manoeuvres. He ended the presentation expressing how drugs and pacemakers must be reserved for the most complex patient cases.
model prior to these clinics, it is hoped, developing across the country.
Other notable highlights included presentations from international leading Dr Angel Moya, Chair of the Guidelines Dr Adam Fitzpatrick, Consultant syncope experts, Professor A J Camm on Task Force, opened the forum presenting Cardiologist and pioneer of the Rapid obstructive cardiac disease in syncope, on the Guidelines for the Diagnosis and Access Blackouts Triage Clinics, advised highlighting how this cause of syncope Management of Syncope (Version 2009), delegates on the future organisation accounts for 3-5% of cases and Dr Edward highlighting the most relevant changes of syncope services. Dr Fitzpatrick Rowland, Consultant Cardiologist at to the European Society of Cardiology highlighted the prevalence of misdiagnosis The Heart Hospital, discussed the (ESC) Syncope guidelines in 2009. The of blackouts/T-LoCs in England today. cardiac causes of syncope and related new guidelines developed by the ESC “Fatal arrhythmias are missed, and evidence back to NICE Guidelines on have re-defined syncope. “Transient loss many patients are misdiagnosed with Transient Loss of Consciousness. Dr of consciousness (T-LoC), is syncope epilepsy”. To improve syncope services, Michele Brignole presented on the when there is a transient lack of blood Dr Fitzpatrick discussed the success new guidelines for implantable loop supply,characterised by rapid onset,short of the establishment of Rapid Access recorders (ILR) following the release of duration and spontaneous recovery.” Blackouts Clinics, the first of which he ESC Guidelines on syncope from 2009. He stressed how the new Guidelines established at the Manchester Heart New guidelines state that an ILR is used have placed increased emphasis on the Hospital in 2007. The Rapid Access to monitor heart rhythms for months importance of long term heart rhythm Blackouts Clinic model in Manchester at a time if the episodes of transient monitoring to improve the accuracy is run by a multidisciplinary team from loss of consciousness are less frequent of a diagnosis, particularly in cases of cardiology, neurology, and falls. The than every 30 days. Dr Robert Sheldon, unexplained syncope. team work together to give all patients University of Calgary, presented on Syncope work up, stressing above all of the importance of accurate patient history in obtaining an accurate diagnosis.
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Fatal arrhythmias are missed, and many patients are misdiagnosed with epilepsy. One of the UK’s leading syncope experts, Professor Richard Sutton of St Mary’s Hospital, London, discussed the diagnosis and treatment of reflex syncope. He reviewed the value of various diagnostic tests to diagnose syncope, including the importance of obtaining an accurate patient history, an ECG, physical examination to rule out heart disease, Tilt Table testing and the most recent development for long term heart monitoring, the implantable loop recorder. He advised delegates on how to manage and treat patients with reflex syncope, stressing the usefulness of adequate salt and fluid levels and
referred to the clinic a basic, thorough evaluation, so a serious heart condition can be ruled out and appropriate followup or specialist treatment provided.
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The service provided at Manchester demonstrates a best practice model for hospitals across the UK, highlighting a system that ensures swift and accurate diagnosis of blackouts and is also cost effective for the healthcare system as patients are not undergoing unnecessary or repeated investigations or hospital admissions before a diagnosis is reached. Pilot hospitals across the UK will be testing the Rapid Access Blackout Clinic
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This first successful National Syncope Forum must bode well for present and future syncope patients. It is hoped that this will become an annual event, bringing together the world’s leading syncope experts to improve syncope services and the quality of life for syncope patients. The National Syncope Forum was organised by Professor A J Camm, Professor of Clinical Cardiology, St George’s Hospital and Dr M Khan, General Medicine and Care of the Elderly, Epsom General Hospital. Report by Pippa Mawle, STARS Project Co-ordinator info@stars.org.uk
Learning To Let Go
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ur daughter Maddy has very mild RAS. She had her first seizure at the age of two, or thereabouts, and we are extremely lucky in that she has never had more than five or six in a year – in every case triggered by a recognisable factor such as dehydration, being about to run a temperature, or just straightforward physical or emotional shock.
the wound and the other cushioning her head with his sweatshirt. All through the trip to the local hospital and then Aberdeen A&E I teetered between trying to keep Maddy’s spirits up and watching for signs of an attack, and keeping my own worries under the surface. At one point, I was reduced to idiotically stroking her shin (the only bit of her I could reach while she was on the bed in casualty), muttering a weird litany of
Maddy is about to turn 18 and leave home to go to university. I suppose it’s natural for a parent to stop and reflect – it’s an exciting and scary time for us just as much as it is for our children. But when I look back over the past year, I realise just how quickly Maddy has been growing up and how difficult we have found it to walk the tightrope between continuing to watch over her and trusting her with her own decisions about who to tell, when to wear her MedicAlert emblems and so on.
“You’re being very brave, well done, you’ll be fine, you’re doing ok”. She was, of course, absolutely fine, chatting away to the (way too young) junior doctor at A&E as he first anaesthetized, then sewed up her head. I was the one who nearly fainted – one glance too many as he was weaving the local anaesthetic through her scalp!
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We are sure she will have a happy and fulfilling university life, just as we did.
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Cathy and her daughter, Maddy
Dad and I have tried simply to give advice, to remind her about telling the student health service and so on, and not to worry. We’ve printed off several of the really helpful STARS leaflets so she can give them to her Director of Studies, her accommodation warden and anyone else, but we can’t live her life for her. We are sure she will have a happy and fulfilling university life, just as we did. She will join the ski club and the climbing club, and have a wonderful time, and doubtless have many of the usual student escapades. We had a practice run when she and a group of friends went up to Aviemore for a week in the summer, and we take comfort from the fact that several of her friends are going to the same university.
Both times, Maddy was terrific – calm, aware of the possibilities but not in a panic as to whether she was likely to faint. So much more together than me, Just over a year ago, Maddy had to have who was trying to be resolutely cheerful her first two fillings. Of course, we and calm but feeling like the swan – But I guess the truth is that however had given the dental practice details of collected on the top, but paddling like grown up she is, she will always be our baby and we will always carry that extra Maddy’s RAS for the file, but this was mad underneath. concern over and above the normal the first time we’d had to do anything about it – and one of the things which Come October, and her 17th birthday, it parental anxiety. But we will always be can set her off is having strange things was time to learn to drive. Of course, proud of the way Maddy gets on with in her mouth! Our dentist was brilliant, there were additional forms to fill in due her life, doesn’t let having RAS stop her though – he took time out of his lunch to the RAS. Thanks to the advice from doing what she wants to do, and is so break a few days before the actual Jenni and the medical experts at STARS, understanding about our worries and appointment to give Maddy a dry run – the application was straightforward so patient when we can’t stop ourselves introducing each of the tools one at a despite the slightly worrying forms, and checking she’s ok. Almost who is looking time – and on the day, allowed plenty of Maddy’s licence came through with no after whom! extra time for the anaesthetic to work. problem at all. She passed her test in Cathy Guthrie July and has already got a seriously long Aberdeenshire Then, a week or two later, Maddy was distance trip under her belt, driving from playing baseball in the park with her Inverurie in Aberdeenshire to Cropredy PS. Since receiving this, friends. Suddenly, I heard thudding feet in Oxfordshire and back again for the on the path, and two of her pals shouted annual Fairport Convention Cropredy Cathy has told us that Maddy has just completed her first “Maddy’s been hit on the head by the Weekend festival. baseball and she’s bleeding!” My first year at University, really question was, “Has she had a seizure?” And now she’s off to University. All settled into student life and and I was amazed to find her still through the information sessions and conscious, with one friend staunching the various registration processes, her is having lots of fun.
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REACHING OUT TO ELDERLY CARE HOME RESIDENTS
FALLS Detectors I
n our last issue we carried an article written by Jane Bateson regarding her falls detector. Since then we have received many calls from our members asking for more information on falls detectors and how they could obtain one.
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lderly care home residents are prone to syncope. Researchers have found that more than half of frail people, aged 60 and older, who are living in a nursing home, have syncope caused by low blood pressure, especially in the morning.1
 What is a Falls Detector? A falls detector is a device which is worn about the person, usually on a belt around the waist, and it very simply detects what position you are in. It can be recommended for you if you have a history of falls or are a little unsteady on your feet, spend a long time at home alone and, if you did fall, you spent a long time on the floor before someone found you.
Care home residents are particularly vulnerable to a form of syncope caused by episodes of low blood pressure. There are several reasons for this; they can be less active and sit for longer periods, they can be on medications that affect blood pressure and they tend to drink less fluid than younger healthy people. Syncope can also often be missed in older adults, diagnosed as a fall instead of a blackout. This is due to the fact that pre-syncope symptoms of dizziness and light-headedness are often not experienced in syncope in older adults so there is little or no warning and no recognition when ‘coming round’ that they have just blacked out. Consequently a fall is reported and the cause of the fall – losing consciousness - is not investigated.
 How does it work? It is very important to wear the Falls Detector at all times except when you are in bed. The sensor will detect when you are not in a vertical position such as sitting, standing or sleeping. If you fall and are not upright within a pre-determined time, an alarm will go off. If, after another pre-determined time you are still not upright an alert is sent to the monitoring centre where it will be picked up by an operator. The monitoring centre will first of all try to contact you via the loud speaker in the base unit. If there is no response, they will then call the nominated person on your list of contacts to go to your house and assist where necessary.
Over the past six months STARS has been developing new information to raise awareness and improve the management of syncope in care homes. With the support of a Consultant of the Elderly and research conducted at ten care homes in the West Midlands, STARS has developed a new Syncope in Care homes resource. This resource aims to raise awareness of syncope as a cause of unexplained falls and blackouts and provide simple advice on how syncope can be managed in elderly residents for care home managers, staff and relatives.
 How do I get one? It varies from area to area, however if you already have a Social Worker or Occupational Therapist helping you, you will be able to speak to them about it. Alternatively, you can contact your Social Care and Health Team at your local council who will be able to help.
STARS would like to encourage members to help raise awareness of syncope in care homes and improve the care of elderly relatives. Contact Pippa Mawle to receive a copy of the Syncope in Care homes resource to take to a care home near you. Awareness of syncope in elderly residents is key to effective treatment and prevention of recurring unexplained falls and blackouts, please help us to raise awareness and improve the care and quality of life of elderly residents. Please contact: Pippa Mawle pippa@stars.org.uk +44 (0) 1789 450564
 How much does it cost? Again, this is dependent on what area you are in. In most cases the equipment is free of charge however there is a weekly charge for the service and the average cost is £1.20 per week. There are some concessions for those that already receive certain benefits and your Social Worker or care team assistant can advise further on your eligibility.
1 Grubb BP, McMann MC, ‘Fainting in Children, Adolescents, and Older People’, Fainting Phenomenon, (Futura Publishing Company, Inc, Armonk, New York, 2001) 81
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STARS Education ALERT CARDS ORDER YOUR PACK NOW! Our popular Syncope and RAS Alert Cards are
available in packs of 20. Please send your full name,
STARS Education DVD IT’S ARRIVED!
address, the name of your condition and a one pound coin to Jenni Cozon at: STARS, PO Box 175,
Stratford upon Avon, Warwickshire, CV37 8YD
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Dear STARS
My daughter Jessica wa s due to go on a schoo l activity holiday, and after filling ou t the medical questionna ire they refused her on the groun ds of the insurance polic y. Jessica was very upset so I conta cted you (STARS) for he lp and immediately you were ab le to forward the informa tion and support that secured he r place on the school tri p.
We are very grateful for your help and support. Jes sica had a fantastic time enjoying all the activities as she normally would. A very big thank you to
all at STARS
Roy and Jessica Carro ll Liverpool
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his long awaited DVD has arrived and for the past few months we have been responding to requests from school nurses and head teachers who have pupils diagnosed with RAS, Syncope and POTS. The DVD includes three chapters: an introduction to syncope and our patient organisation, advice on managing syncope in school and advice from parents and syncope specialists. Explanations on what syncope is, what happens in the event of a syncopal episode and how to enable a child to participate in all school activities are included.
Thank you Roy for writing to us. If any child is being denied a place on a school trip because of RAS, please contact us. All children with RAS with the right awareness and management can lead normal lives.
This is a complementary resource provided to schools with alert cards, information sheets and care plans to educate schools on the management of syncope. It is intended that this DVD will remove the worries and fears that many schools harbour when a pupil presents with one of these conditions, enabling the child to lead and enjoy a normal full school life. Is your child is due to transfer to secondary school in September? Then this is a perfect means to ensure that all the concerns the school may have are addressed and you and your child can happily look forward to a new school year.
For more information on Education please visit: www.education.stars.org.uk 01789 450564
If your school is interested in obtaining this Education DVD, please ask them to email pippa@stars.org.uk.
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RAS Diagnosed at Last!!
shocks like a splash of cold water and anxiety/fear (me leaving the room). Now that he is older they are mainly triggered by pain if he falls over and other stimuli but he is now old enough for us to pre-warn him.
would go into auto pilot when y son Frankie is three years it happened but it’s Frankie’s sister, old and has suffered with Charlotte, who is 2 years older than RAS since he was 3 months old. him, who has found it the hardest. To Whenever I went to see the Health Visitor about his attacks find your baby brother lying on the she would try to reassure me floor with his arms and legs jerking, and by saying he was just holding looking as if he is ‘dead’ must be very his breath and it was nothing to hard to cope with. worry about. After bringing it to my doctor’s attention for the third time, I asked for a referral to a paediatrician at our local hospital.
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One year after his first attack, Frankie was finally diagnosed with RAS. I was told he was a text book case and was given the STARS web site for more information. To say we were relieved was an understatement and I will never forget leaving that hospital. We at last had a diagnosis, the GP was wrong and I was not an over anxious mother!
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RAS is many things and the stress it brings to us parents is huge.
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Frankie could have up to eight seizures per day, mainly when I left the room or if he hurt himself. As a baby he would be playing on the floor, I would leave the room to make a cup of coffee and as I returned he would be lying on the floor having an attack. He would be lifeless for a short while then very distressed as he came round. My husband and I 01789 450564
Needless to say discipline has been hard as the last thing we want is to trigger an attack, but we do not want a spoilt little boy who is out of control. We can now distract him when we think an RAS attack is imminent but, of course, this does not work if he is already into a seizure. I am very careful to remind him that the water will be
...just to know other parents are going though the same emotions and stresses you are makes a big difference.
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To avoid upsetting Charlotte even more, we would try to be very calm and controlled during these seizures, but when she was at pre-school I would cry and cry for Frankie and all his attacks and what he must be experiencing (at the time I did not realise that he would not remember anything). When Charlotte came home from school I would be back to being the calm mummy once again so as not to not frighten her even more. RAS is many things and the stress it brings to us parents is huge. Frankie’s RAS attacks are now infrequent. He can go a whole month without any and then have a few in a week. Considering he was having eight a day we are so happy! I try to explain to him he has had a seizure and what has happened but to be honest he doesn’t understand yet. As a baby, his attacks would be prompted by loud noises such as the vacuum being switched on, pain from bumping into furniture, frights,
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cold if he is going swimming or paddling. The shock of cold water could be relied upon to trigger an attack when he was younger! Similarly, when I vacuum he knows to count “1, 2, 3” and then the noise will start. It works a treat and it has never caused a problem since. Frankie is a very happy, confident three year old and I am so pleased I was given the STARS web site address by our paediatrician - just to know other parents are going though the same emotions and stresses you are makes a big difference. We found the RAS booklet and alert cards to be invaluable, particularly for nursery and pre-school. Life is so much easier now that we can explain things to Frankie and fingers crossed he will grow out of RAS eventually. Kerry McGill Wirral
info@stars.org.uk
Cognitive Behavioural Therapy (CBT) for Syncope Why consider psychological therapy for Reflex Syncope? Syncope is a common condition and can impose a considerable impact on an individual’s quality of life. People with recurrent syncope report significant levels of psychological distress about intrusive and disabling symptoms (fatigue, blackouts, nausea), losses and changes in roles (work, health, activities) and challenges to independence (relationships, mobility and sense of self). Many patients with syncope experience troubling anxiety with worry and fear associated with their symptoms, some report panic and others experience depression. This is not surprising given the unpredictability of the condition, possible triggers and potential impact it can have on confidence about everyday tasks. Whilst some people seem to push on in spite of it, others find it a frustrating, disabling condition. Furthermore, psychological distress has been found to have an effect on response to medical treatment and advice – people who are more distressed tend to respond less well to treatment.
How is CBT beneficial?
What is CBT?
How can I get CBT? Ask your GP or hospital specialist team for a referral to someone trained in CBT. The British Association for Behavioural and Cognitive Psychotherapies have a register of accredited CBT therapists. You could also try self help - there are some interactive computer based programmes (for example Beating the Blues and Fear Fighter) available through your GP, and self help books on CBT approaches to coping with physical illness.
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Case study example: Richard has been dreading going away on a business trip and worries about how he will cope if he has a syncopal attack. At the airport he hears his flight called and walks down the long corridor to the elevator for the departure gate. He starts to notice feeling unsteady, giddy and hot. Trigger: feeling unsteady and hot approaching the escalator.
Thoughts: What if I faint? Imagines falling backwards knocking others over. I could injure myself and others. I’m feeling very hot and dry. I want to get out of here. People can tell there’s something wrong with me. Why me?? Physical state: Hot, sweaty, fast pulse, giddy, unsteady, tired, thirsty.
Emotions: Fear, embarrassment, dismay, fed up.
Actions: Monitors physical signs. Avoids escalator, finds lift. Sips water. Looks for somewhere quiet to sit down and the toilets. Thinks to self, can I do this again?
Working with an experienced CBT therapist, Richard can start to identify his difficult experiences into these separate parts, as well as notice the impact of these on other aspects of his life. This can allow him to see how this problem is operating and start to identify areas for change. For example, Richard might find it helpful to develop his skills in symptom management – perhaps practising using applied tension or relaxation in trigger situations. A CBT approach provides a means to guide you and your therapist to map out current experiences in detail and look for opportunities for trying out alternative ways of thinking, predicting, paying attention and acting. The goal is to improve your quality of life by addressing emotional distress and managing physical symptoms better. It is an active therapy – you have to be prepared to investigate and try out different approaches and evaluate the impact, and sometimes this can make you more anxious before you improve. It usually involves working collaboratively with a therapist, perhaps for six weeks to six months; it is not a quick fix.
Author: Dr Christine Baker, Consultant Clinical Psychologist Approved by: STARS Medical Advisory Committee
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FUNDRAISING
OUR STARS FUNDRAISERS HAVE BEEN BUSY SINCE CHRISTMAS... Once again Alison Pena and her mother, Ada Smith, have been ‘waving the flag’ for STARS. Ada Jane Mackay, our has been selling teddies and Glasgow-based STARS Alison ran a second hand volunteer and fundraiser, book sale at the company has just raised another £210 where she works, Cebtex through organizing a local Limited, raising £40. Thank raffle. We are running out of you both very much for your new words to say “ thank continued support. you”, Jane!
Lianne Baker from Coleshill sent us a cheque for £290 as a result of a Boogie Night she organized in aid of STARS. It is a case of ‘lucky STARS’ because Alex, a member of her scout group, works for the National Grid, who supports the endeavours of their employees by matching whatever amount they raise. In this case STARS received nearly £600. Wow!! Bridgette Nottingham and her friends from the canteen at Priory Academy Main School, Lincoln sent us a cheque for nearly £80. Thank you very much Bridgette. Many of you will remember that it was Bridgette who organized a very successful Dinner and Dance in Lincoln a few years ago for STARS.
From Kent, we have heard that Melanie Gaspa’s grandmother celebrated her 80th birthday recently and in lieu of gifts asked for donations to STARS. Thank you both for thinking of us and a belated happy birthday! Linda and Nicola McGillivray have been walking again! In May, together with some long-suffering girlfriends, they completed another 10 mile sponsored walk, raising the great sum of £457.62. Thank you everybody!
A STAR IN DORSET Naomi Fear, a member of STARS, has won two awards this year. She is the Dorset Echo Apprentice of the Year and Wessex FM Local Hero Apprentice of the Year.
Naomi works for Stag Office Supplies and her boss, Simon, nominated her, highlighting that although she is only 18 years old, she is mature, determined, cheerful, outgoing and always happy! He said that these attributes have had a real positive effect on the morale of the office and the customers just love her! Some of you will recognize the name because Naomi features in our Case Study section on the STARS website. Diagnosed at the age of 2 years with RAS, she has overcome some difficult times, including being fitted with a loop recorder and then very quickly with a pacemaker when it was realised that her heart was stopping for a longer than acceptable period. Despite these setbacks during her early teenage years, Naomi has always remained positive and does not let her condition affect her everyday life. She is a real inspiration to young people and we at STARS are very proud of you, Naomi! Naomi Fear Dorset 01789 450564
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NEWS FLASH STARS is pleased to announce the launch of their fundraising department, headed by Wendy Adams with the assistance of Fionnghuala Martin.
Fionnghuala and Wendy
COMPLETED NOT DEFEATED We completed ‘The West Highland Way’ walk quicker than planned, starting on the 21st April, as scheduled, and finishing on the 25th April. We got to the start and decided to try the five day route, and then if it was too difficult, we would change it for the remaining days. We were spoilt by the weather and lack of midges and we only saw rain on the third day. It didn’t stop all day and night!!! With this in mind we decided to change our sleeping arrangements for the third night. Below is a breakdown of the legs we did during the walk: Wed 21st - Milngavie to Balmaha 34.76km/21.73miles Thurs 22nd - Balmaha to Inveranon 45.87km/28.67miles Fri 23rd - Inveranon to Bridge of Orchy 34.31km/21.44miles Sat 24th - Bridge of Orchy to Kinlochleven 33.97km/21.23miles Sun 25th - Kinlochleven to Fort William 26.96km/16.85miles
6hr 38min 10hr 15min
The worst day for us, graft wise, was day two, Balmaha to Inveranon. I looked at the map and thought ‘a nice walk by the Loch’. Although it was lovely scenery it was a very hard day. All in all I’m very glad, for a number of reasons, that we did it. I can now put my medical problem behind me and keep moving forward and I raised a lot of money for STARS, a charity that is very close to my family. All of this wouldn’t have been possible without the donations from everybody. So thank you all!!!
7hr 1min 6hr 55min 5hr 47min
Thank you again and take care. Richy Todd Falkirk
Total miles - 109.92 The total miles don’t marry up to what is advertised for the walk, however, we used a GPS and just put the total down from this.
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TOP OF THE POTS Mascalls Legends Football Club entertained the Jess Conrad Showbiz XI on Sunday 23rd May. An estimated crowd of 500 attended the Memorial Ground in Paddock Wood, Kent and watched an entertaining game played in blistering heat which was unfortunate for the “legends”, many of whom were well past their sell-by date! The Showbiz team were fronted by Cheryl Ferguson – Heather from Eastenders - who signed hundreds of autographs, kicked off the match and played the second half. The match was held to raise funds and the profile of a little-known condition called Postural Orthostatic Tachycardia Syndrome (POTS). POTS can arrive without warning or explanation and attacks the neurological system. It causes the body’s natural reactions to switch off meaning that the body temperature regulator doesn’t work; the heart increases rapidly with small movements; blood doesn’t circulate normally – and much more. We are grateful to Charles & Tracey Leaver of The Chequers in Laddingford, near Maidstone for hosting (and paying for) the post match meal and presentation. The match ended 3-2 in favour of the Showbiz team.
The match raised £2,076 and together with donations of £759 a total of £2,835 will be passed to STARS, the only organisation that tries to help sufferers with this condition. With £3,730 from a walk last year we have now raised over £6,500 for STARS to go towards POTS-related issues. As much as the money is important, the Stanley family are trying to raise the profile of POTS in the hope that it may lead to research in the UK. If you would like to make a donation you can do so on: http://www.justgiving.com/POTSresearch Andrew Stanley Kent
Mark Pitcher ran his first ever
Wedding favours for STARS
marathon in Barcelona in March, in aid of STARS, raising a total of £738 in the process. "We were introduced to STARS late last year after my fiancee was diagnosed with Vasovagal Syncope. It was an immediate choice to raise some funds for this worthwhile and fantastic charity. It certainly motivated me to complete the course! Keep up the good work!"
On 12 December 2009, Karen Matthews married Chris Robertson at St Michael’s Church, Great Oakley. Karen, who is a member of STARS, suffers with Neurally Mediated Syncope. To show her appreciation of the support and information we have given her she and Chris decided to make a donation to STARS in lieu of giving wedding favours to her guests. STARS received a very generous cheque for which we say THANK YOU and send Karen and Chris very best wishes for a long and happy married life.
01789 450564
www.stars.org.uk
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info@stars.org.uk
STARS GOING GLOBAL
THE INCREDIBLES
A big thank you to Holly Allright, her parents, her brother and her friends!! On 23rd May they ran the Gerrards Cross Fun Run in aid of STARS and raised an incredible £600. Holly suffers with POTS and wanted other STARS members with POTS to see that there is always hope and although Holly found the run very challenging, she and the rest of the team thoroughly enjoyed themselves!
F
ebruary 2010 saw the launch of the STARS Valentine’s campaign promoted with the support of STARS patron Sir Roger Moore. On Valentine’s day Sir Roger urged people across Europe with unexplained loss of consciousness or blackouts to get their heart checked by their doctor as a blackout can be a symptom of an irregular heartbeat.
To view the STARS International website leading to information in Danish, Dutch, Italian, Spanish and Swedish, visit: www.stars-international.org The campaign’s success can be seen by new interest from Syncope medical experts in France, Poland and Japan to develop similar STARS translated resources. Watch this space for new translated information on an international scale!
“STARS’ aim during the campaign was to reach out to patients all over Europe to ensure all can access the prompt diagnosis they deserve” said Trudie Lobban, and adds “I know from personal experience in my family that living with syncope can be hard, but the lack of diagnosis and dealing with the unknown makes it even more frightening and distressing”. Thank you to all the students in Bronte House, Maltman’s Green School, Gerrards Cross who raised £420 for STARS this year. Milly Patrick and Victoria Mann who are Bronte House Captain and Vice House Captain organised this fundraising event, supporting one of their friends with RAS. This is a huge amount and everyone must have worked so hard to achieve this grand total. Thank you everyone for finding time to raise money for others whilst in the midst of those exams! 01789 450564
Following the campaign, the STARS International portal website was established to promote awareness of the diagnosis and management of syncope across Europe. The STARS International portal leads to five STARS European websites which hold new translated patient information for patients in Denmark, the Netherlands, Italy, Spain and Sweden. From the STARS European websites patients from each country can watch a video message from Sir Roger, learn more about syncope and access monitoring tools through information sheets.
www.stars.org.uk
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STARS International Websites: UK www.stars.org.uk US www.stars-us.org Denmark www.stars-dk.eu Italy www.stars-italia.eu Netherlands www.stars-nl.eu Spain www.stars-es.eu Sweden www.stars-se.eu
info@stars.org.uk
You Know You Have Postural Tachycardia Syndrome (POTS) when..... by Helen Ensor
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One of our subscribers, Hannah Ensor, has written and illustrated this delightful book. It tells in a humourous way the havoc that POTS can cause to an individual’s life. Available from: www.stickmancommunications.co.uk
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Box Bristol, BS40 8WB Box Stratford uponMagna, _ _STARS, _ _ PO _AFA, _ PO _175, _ _1219, _ _Chew _ _Avon, _ _Warwickshire, _ _ _ _ _CV37 _ _8YD_ _
The range of of advanced advanced nutritional nutritional formulas formulas have havebeen beendeveloped developedon onthe TheCardioace® Cardioace® range the basis basis of of extensive extensive world-wide world-wide research, research, over over the the last last how how many many years? years?
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Name:_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _Email:_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Name: .............................................................................. ....................................... Address:_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Address: ______ __________ ............................................................................Email: .......................................................... www.stars.org.uk info@stars.org.uk
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SUBSCRIPTIONS AND DONATIONS
Your subscriptions are what keep STARS up and running. Please renew your 2010 subscription Subscriptions are a minimum of £15/$25/€25 a year. It is vitally important that you remember to renew your subscription. Without your help, we would not be able to provide our essential service to the families of RAS and Syncope sufferers. Thank you. You can type on this form and email it back to jenni@stars.org.uk, or print, complete & post it back. Name: Address: Post Code: Telephone: Email:
SUBSCRIBE & DONATE
£/$/€
I would like to make a donation to STARS and enclose: I have made a donation to STARS via PAYPAL at www.stars.org.uk to the sum of: I have made a donation to STARS via my CAF account to the sum of: (Please fill in and email back to us for identification purposes) I would like to RENEW my subscription to STARS and enclose (min of £15/$25/€25) I have renewed my subscription via PAYPAL at www.stars.org.uk to the sum of: I have arranged a monthly standing order from my Bank / Building Society Account to STARS (min. £2);
(state amount)
I have arranged an annual standing order from my Bank / Building Society Account to STARS (min £15);
(state amount)
Please tick the space if you agree to gift aid your subscription/donation. (Further info on next page)
Tick Here:
GIFT AID DECLARATION
STANDING ORDER AUTHORITY
My Bank
Name of taxpayer:__________________________
Bank Address:
Address: _________________________________ _________________________________________
PLEASE PAY: STARS, Account: 02423406, Sort Code: 30-98-26 Lloyds TSB Plc, 22 Bridge Street, Stratford-Upon-Avon, CV37 6AG
___________________ Postcode: _____________ Please tick to allow STARS to claim an extra 28p for every £1 you donate, at no cost to you. I want STARS to treat all donations I have made since 6 April 2000, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.
The sum of: £/€/$ On (First Date)
I currently pay an amount of income tax and/or capital gains tax at least equal to the tax that STARS reclaims on my donations in the tax year (currently 28p for each £). I may cancel this declaration at any time by notifying STARS.
And after this, every
Month / Year
2010 ( delete)
My Account Number: My Sort Code
I will notify STARS if I change my name or address. Please note full details of Gift Aid tax relief are available from your local tax office in leaflet IR 65. If you pay tax at the higher rate you can claim further tax relief in your Self-Assessment tax return. Return to STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD
/
My Signature Date Please print and fill out this form and hand to your bank or building society. Thank you 15
STARS Patients Day Registration Form Sunday 3rd October 2010, 10:00-16:00 at Hilton Birmingham Metropole (by NEC) Chair: A Fitzpatrick 10:00 RAS and BHS and what is breath-holding anyway?
W Whitehouse
10:30 The Autonomic Clinic - Why is it so special? Prof. Mathias’ team 11:10 Managing Syncope: Hypnotherapy
S Murray
11:40 Psychological affects of syncope in patients from young people to old
C Baker
12:05 Daily Management of Syncope/POTS: A Patient’s Perspective
L Kavi
12:20 Syncope and Falls in the Elderly
E Brierley
12:45 Lunch Chair: T Lobban 14:00 Review of STARS activities T Lobban 14.10 I have just experienced my first Syncope attack - should I lose my driving licence?
A Fitzpatrick
14:40 The Fainting Phenomenon
B Grubb
15:25 Question Time with the Professionals 16:00 Close A full day meeting with refreshments and lunch. This year, STARS is able to offer subsidised rates of £25 per delegate to all STARS subscribers and their carers registering directly through STARS – a discount of 50%. Cost to non-subscribers £50.00 pp. Personal Details
Please tick in the box whether you are: Subscriber
Full Name: Address:
Non-Subscriber
Patient Carer / Friend
Town: County:
Please record the name of each person attending with you:
Postcode: Dietary Requirements Please let us know if you have any specific requirements or allergies.
Telephone:
Email:
I enclose a cheque payable to STARS for £ / I enclose a postal order for £ Please send completed registration form to: Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD Tel: +44 (0) 1789 450 564 01789 450564
www.stars.org.uk
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info@stars.org.uk