STARS SUPPORTS ‘KNOW YOUR PULSE’ CAMPAIGN 2010 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). The Blackouts Trust WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES 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 [email protected]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. STARS PATIENTS DAY Sunday 3rd October 2010 Trudie Lobban, Founder & CEO of STARS Dr Blair Grubb, Professor of Medicine & Paediatrics S 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 SEPTEMBER 2010: ISSUE 33
Transcript
STARS SUPPORTS ‘KNOW YOUR PULSE’
CAMPAIGN 2010
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 2millionpeople have an arrhythmia (diagnosed and undiagnosed).
The
Blackouts
Trust
WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES
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
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.
STARSPATIENTSDAYSunday3rdOctober2010
Trudie Lobban, Founder & CEO of STARS
Dr Blair Grubb, Professor of Medicine & Paediatrics
STARS 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
SEPTEMBER 2010: ISSUE 33
ArrhythmiAAwarenessWeek(AAAW)7th–13thJune2010
With over 430 individualsupporters and more
than 2500 events across theUK, this year’s ArrhythmiaAwareness Week has provedthemost successful awarenesseventtodate.
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.
STARS wants to thank everybody who took part in AAAW 2010.
Here are a couple of highlights from the week…
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.
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.
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
experts from across the globecame together for the firstNational Syncope Forum. Theforum was a demonstrationof the national initiativeby medical professionals toimprovesyncopeservicesacrosstheUK.
Dr Angel Moya, Chair of the Guidelines Task Force, opened the forum presenting on the Guidelines for the Diagnosis and Management of Syncope (Version 2009), highlighting the most relevant changes to the European Society of Cardiology (ESC) Syncope guidelines in 2009. The new guidelines developed by the ESC have re-defined syncope. “Transient loss of consciousness (T-LoC), is syncope when there is a transient lack of blood supply, characterised by rapid onset, short duration and spontaneous recovery.” He stressed how the new Guidelines have placed increased emphasis on the importance of long term heart rhythm monitoring to improve the accuracy of a diagnosis, particularly in cases of unexplained syncope.
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
counter-pressure manoeuvres. He ended the presentation expressing how drugs and pacemakers must be reserved for the most complex patient cases.
Dr Adam Fitzpatrick, Consultant Cardiologist and pioneer of the Rapid Access Blackouts Triage Clinics, advised delegates on the future organisation of syncope services. Dr Fitzpatrick highlighted the prevalence of misdiagnosis of blackouts/T-LoCs in England today. “Fatal arrhythmias are missed, and many patients are misdiagnosed with epilepsy”. To improve syncope services, Dr Fitzpatrick discussed the success of the establishment of Rapid Access Blackouts Clinics, the first of which he established at the Manchester Heart Hospital in 2007. The Rapid Access Blackouts Clinic model in Manchester is run by a multidisciplinary team from cardiology, neurology, and falls. The team work together to give all patients
referred to the clinic a basic, thorough evaluation, so a serious heart condition can be ruled out and appropriate follow-up or specialist treatment provided.
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
model prior to these clinics, it is hoped, developing across the country.
Other notable highlights included presentations from international leading syncope experts, Professor A J Camm on obstructive cardiac disease in syncope, highlighting how this cause of syncope accounts for 3-5% of cases and Dr Edward Rowland, Consultant Cardiologist at The Heart Hospital, discussed the cardiac causes of syncope and related evidence back to NICE Guidelines on Transient Loss of Consciousness. Dr Michele Brignole presented on the new guidelines for implantable loop recorders (ILR) following the release of ESC Guidelines on syncope from 2009. New guidelines state that an ILR is used to monitor heart rhythms for months at a time if the episodes of transient loss of consciousness are less frequent than every 30 days. Dr Robert Sheldon, University of Calgary, presented on Syncope work up, stressing above all of the importance of accurate patient history in obtaining an accurate diagnosis.
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.
Transient loss of consciousness is syncope when there is a transient lack of blood supply, characterised by rapid onset, short duration and spontaneous recovery.
“”
Fatal arrhythmias are missed, and many patients are misdiagnosed with epilepsy.“ ”
her first seizure at the age oftwo,orthereabouts,andweareextremelyluckyinthatshehasneverhadmorethanfiveorsixinayear–ineverycasetriggeredby a recognisable factor suchas dehydration, being aboutto run a temperature, or juststraightforward physical oremotionalshock.
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.
Just over a year ago, Maddy had to have her first two fillings. Of course, we had given the dental practice details of Maddy’s RAS for the file, but this was the first time we’d had to do anything about it – and one of the things which can set her off is having strange things in her mouth! Our dentist was brilliant, though – he took time out of his lunch break a few days before the actual appointment to give Maddy a dry run – introducing each of the tools one at a time – and on the day, allowed plenty of extra time for the anaesthetic to work.
Then, a week or two later, Maddy was playing baseball in the park with her friends. Suddenly, I heard thudding feet on the path, and two of her pals shouted “Maddy’s been hit on the head by the baseball and she’s bleeding!” My first question was, “Has she had a seizure?” and I was amazed to find her still conscious, with one friend staunching
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
“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!
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, who was trying to be resolutely cheerful and calm but feeling like the swan – collected on the top, but paddling like mad underneath.
Come October, and her 17th birthday, it was time to learn to drive. Of course, there were additional forms to fill in due to the RAS. Thanks to the advice from Jenni and the medical experts at STARS, the application was straightforward despite the slightly worrying forms, and Maddy’s licence came through with no problem at all. She passed her test in July and has already got a seriously long distance trip under her belt, driving from Inverurie in Aberdeenshire to Cropredy in Oxfordshire and back again for the annual Fairport Convention Cropredy Weekend festival.
And now she’s off to University. All through the information sessions and the various registration processes, her
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.
But I guess the truth is that however grown up she is, she will always be our baby and we will always carry that extra concern over and above the normal parental anxiety. But we will always be proud of the way Maddy gets on with her life, doesn’t let having RAS stop her doing what she wants to do, and is so understanding about our worries and so patient when we can’t stop ourselves checking she’s ok. Almost who is looking after whom!
CathyGuthrie Aberdeenshire
4
We are sure she will have a happy and fulfilling university life, just as we did. “ ”
LearningToLetGo Cathy and her daughter, Maddy
PS. Since receiving this, Cathy has told us that Maddy has just completed her first year at University, really settled into student life and is having lots of fun.
FALLS DetectorsIn 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.
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.
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.
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.
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.
Elderly care home residents are prone tosyncope.Researchershavefoundthatmore
than half of frail people, aged 60 and older,whoarelivinginanursinghome,havesyncopecausedbylowbloodpressure,especiallyinthemorning.1
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.
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.
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.
1 Grubb BP, McMann MC, ‘Fainting in Children, Adolescents, and Older People’, Fainting Phenomenon, (Futura Publishing Company, Inc, Armonk, New York, 2001) 81
REACHING OUT TO ELDERLY CARE HOME RESIDENTS
5
ORDER YOUR PACK NOW!
Our popular Syncope and RAS Alert Cards are available in packs of 20. Please send your full name, 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
andforthepastfewmonths we havebeen respondingto requests fromschool nurses andhead teacherswho have pupilsdiagnosed withRAS, Syncope andPOTS.
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.
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.
If your school is interested in obtaining this Education DVD, please ask them to [email protected].
STARS Education DVDIT’S ARRIVED!
STARS Education
ALERT CARDS
Dear STARS
My daughter Jessica was due to go on a school activity holiday, and after filling out the medical questionnaire they refused her on the grounds of the insurance policy. Jessica was very upset so I contacted you (STARS) for help and immediately you were able to forward the information and support that secured her place on the school trip. We are very grateful for your help and support. Jessica had a fantastic time enjoying all the activities as she normally would.
A very big thank you to all at STARS
Roy and Jessica CarrollLiverpool
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.
“
”
For more information on Education please visit:www.education.stars.org.uk
RASsincehewas3monthsold.Whenever I went to see theHealthVisitorabouthisattacksshe would try to reassure meby saying he was just holdinghisbreathanditwasnothingtoworryabout.Afterbringingittomydoctor’sattentionforthethirdtime,Iaskedforareferralto a paediatrician at our localhospital.
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!
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
would go into auto pilot when
it happened but it’s Frankie’s sister, Charlotte, who is 2 years older than him, who has found it the hardest. To find your baby brother lying on the floor with his arms and legs jerking, and looking as if he is ‘dead’ must be very hard to cope with.
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,
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.
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
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. KerryMcGill
Wirral
RASDiagnosedatLast!!
RAS is many things and the stress it brings to us parents is huge.
“”
...just to know other parents are going though the same emotions and stresses you are makes a big difference. “
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.
WhyconsiderpsychologicaltherapyforReflexSyncope?
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.
8
Casestudyexample:
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.
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 op-erating 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 PsychologistApproved by: STARS Medical Advisory Committee
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??
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?
Physicalstate:Hot, sweaty, fast pulse, giddy, unsteady, tired, thirsty.
9
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.
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!!
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!NaomiFear
Dorset
A STAR IN DORSET
Once again Alison Pena and her mother, Ada Smith, have been
‘waving the flag’ for STARS. Ada has been selling teddies and Alison ran a second hand book sale at the company where she works, Cebtex Limited, raising £40. Thank you both very much for your
continued support.
Jane Mackay, our Glasgow-based STARS
volunteer and fundraiser, has just raised another £210 through organizing a local raffle. We are running out of
new words to say “ thank you”, Jane!
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!
OUR STARS FUNDRAISERS HAVE BEEN BUSY SINCE CHRISTMAS...
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
STARS is pleased to announce the launch of their fundraising department, headed by Wendy Adams with the assistance of Fionnghuala Martin.
COMPLETED NOT DEFEATEDWe 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.
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!!!
Thank you again and take care.RichyTodd
Falkirk
Below is a breakdown of the legs we did during the walk: Wed 21st - Milngavie to Balmaha 6hr 38min 34.76km/21.73milesThurs 22nd - Balmaha to Inveranon 10hr 15min 45.87km/28.67milesFri 23rd - Inveranon to Bridge of Orchy 7hr 1min 34.31km/21.44milesSat 24th - Bridge of Orchy to Kinlochleven 6hr 55min 33.97km/21.23milesSun 25th - Kinlochleven to Fort William 5hr 47min 26.96km/16.85miles
Totalmiles-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.
Fionnghuala and Wendy
TOP OF THE POTSMascalls 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 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
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.
Mark Pitcher ran his first ever 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!"
Wedding favours for STARS
February 2010 saw thelaunch of the STARS
Valentine’s campaignpromoted with the supportof STARS patron Sir RogerMoore. On Valentine’s daySirRogerurgedpeopleacrossEuropewithunexplainedlossofconsciousnessorblackoutstogettheirheartcheckedbytheirdoctorasablackoutcanbeasymptomofanirregularheartbeat.
“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”.
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.
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!
A big thank you to HollyAllright, 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!
THE INCREDIBLES
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!
STARS International Websites:
UKwww.stars.org.uk
USwww.stars-us.org
Denmarkwww.stars-dk.eu
Italywww.stars-italia.eu
Netherlandswww.stars-nl.eu
Spainwww.stars-es.eu
Swedenwww.stars-se.eu
The Syncope Toolkit has been produced with the guidance of the STARS expert Medical Advisory Commitee to provide support and inform
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the basis of extensive world-wide research over the last 35 years.
Cardioace® has been carefully formulated to help support cardiovascular health and maintain a healthy heart and circulation in men and women of all ages.
New Cardioace® Plus combines the comprehensive multivitamin formula of the original Cardioace® with 1.3g of plant sterols to help maintain healthy blood
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While the M10-IT Digital automatic Blood Pressure Monitor includes the following features:
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All entries just £1.00; simply answer the question below and send your completed form to:STARS, PO Box 175, Stratford upon Avon, Warwickshire, CV37 8YD_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
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You Know You Have Postural Tachycardia Syndrome (POTS)
when..... by Helen Ensor
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
15
SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your 2010 subscription
Subscriptions are a minimum of £15/$25/€25 a year. It is vitally important that you remember to renew your subscription. Without your help, we would not be able
to provide our essential service to the families of RAS and Syncope sufferers. Thank you.You can type on this form and email it back to [email protected], or print, complete & post it back.
Name:
Address: Post Code: Telephone: Email: SUBSCRIBE & DONATE £/$/€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:
Please print and fill out this form and hand to your bank or building society. Thank you
GIFT AID DECLARATIONName of taxpayer: _________________________Address: ________________________________ ________________________________________ __________________ 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 declarationuntil I notify you otherwise, as Gift Aid donations. 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 thisdeclaration at any time by notifying STARS. 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.
STARSPatientsDayRegistrationFormSunday 3rd October 2010, 10:00-16:00at Hilton Birmingham Metropole (by NEC)
Chair: AFitzpatrick
10:00 RAS and BHS and what is breath-holding anyway? WWhitehouse 10:30 The Autonomic Clinic - Why is it so special? Prof.Mathias’team
11:10 Managing Syncope: Hypnotherapy SMurray 11:40 Psychological affects of syncope in patients from young people to old CBaker 12:05 Daily Management of Syncope/POTS: A Patient’s Perspective LKavi
12:20 Syncope and Falls in the Elderly EBrierley 12:45 Lunch Chair: TLobban
14:00 Review of STARS activities TLobban
14.10 I have just experienced my first Syncope attack - should I lose my driving licence? AFitzpatrick
14:40 The Fainting Phenomenon BGrubb
15:25 Question Time with the Professionals 16:00 Close
