The Pulse
®
Issue No: 3
Spring 2014
Registered Charity No: 1107496 A-A ©2014
16 December 2013: L-R Jo Jerrome, Deputy CEO of Arrhythmia Alliance, Sir Bruce Forsyth CBE and Caroline Holmes, Defibs Save Lives Project Manager at the launch of the Bernard Gallacher Defibrillator Campaign.
Defibs Save Lives update Arrhythmia Alliance is proud to announce a new addition to our campaign to support the placement of public-access defibrillators across the UK and beyond. The Bernard Gallacher Defibrillator Campaign, launched in December 2013, continues the charity’s Defibs Save Lives initiative and reaches out to all golfers and golf clubs in Great Britain and Ireland. We are thrilled to be working together with the Professional Golfers’ Association (PGA) to support the placement of public-access defibrillators (also known as AEDs) and provide CPR and AED training at golf venues across the UK and Ireland in this 2014 campaign to save lives. You can view photos of the campaign launch at Wentworth Golf Club on Monday 16 December 2013 here.
Bernard is only too aware of the need to have lifesaving equipment readily available; in August 2013 he suffered a sudden cardiac arrest and owes his life to early intervention with CPR and the use of an AED. Bernard Gallacher, the 1969-1995 Ryder Cup captain, joined Arrhythmia Alliance to head up a campaign working to support the placement of public-access defibrillators at golf clubs across the UK. We are truly honoured to have been approached by the former Ryder Cup captain to work together in achieving our shared goal to save lives. At the launch, Sir Bruce Forsyth CBE also offered his support to the campaign and said: “The ‘Play Golf – Save Lives’ campaign is a great idea, truly wonderful and I am so pleased to be able to lend my support.” The campaign is based on each Golf Club holding a tournament to raise funds for an AED and Bernard has written to all PGA Professionals in the UK and Ireland calling on them to get involved - and we have already received enquiries from more than 50 Golf Clubs who want to participate since the launch.
Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL
Help us reach the estimated 70% of UK and Ireland golf clubs and nearly 3 million people that they serve currently without a public-access defibrillator on site. Please share information with your local golf venue and help us reach our goal to work with all clubs in the UK and Ireland currently without a lifesaving AED on site by the end of 2014. Keep updated on the campaign and how you could become involved by visiting our Defibs Save Lives website: www.defibssavelives.org/bernard-gallacherdefibrillator-campaign
Hearts & Goals update We are now more than a year into our Hearts & Goals campaign to tackle the UK’s biggest killer: sudden cardiac arrest, and have big plans to take us through 2014 and beyond! On Sunday 29 October 2012, World Heart Day, we announced our partnership with Bolton Wanderers Football Club and former footballer and sudden cardiac arrest survivor Fabrice Muamba for the 2012/13 season. A week later, Hearts & Goals was born. Our campaign goals included supporting the placement of lifesaving automated external defibrillators (AEDs) in communities, sports clubs, clubs and schools across the UK, alongside offering lifesaving CPR and AED training in communities. We have now placed more than 250 public-access defibrillators in communities across the UK as part of the campaign. It has been so successful that our one year plan to save lives continues today! You can learn more about the passion, hard work and inspiring stories behind our amazing fundraisers here. Recent AED launches of note include the Northumberland town of Cramlington on 27 July 2013, where former England international footballer Peter
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Beardsley launched a public-access defibrillator. On 19 September, the South Wales village of Maerdy, Rhondda unveiled a public-access defibrillator, becoming the first community in Wales to do so – a true Hearts & Goals pioneer! Hearts & Goals supporter Laurence Kidd, who lost his mum Rosemary to sudden cardiac arrest at a service station when there was no AED on hand has now gone on to place one at Blandford Primary School in Ipswich, Suffolk, where his own children attend. If you are interested in placing an AED at your child’s school as part of Hearts & Goals please do let us know; we can share resources and nominate you for a place in our Schools Scheme to earn an AED. Join Hearts & Goals: Register your interest in supporting our lifesaving campaign via email at info@heartsandgoals.org or give us a call on 01789 450787.
Hearts & Goals represented in the Virgin Money London Marathon We are pleased to announce that we have chosen Liam Hudson, from Camberley in Surrey, to represent A-A in the 2014 Virgin London Marathon. He started his marathon training programme last October and tweeted on 11 October: “Start training next week! #VMLM2014 @KnowYourPulse So excited to be running for you!” His soon to be mother-in-law, Gwen lost her son and Liam’s best friend Daniel to sudden cardiac arrest in 2007. Daniel was aged just 19 when he suffered a sudden cardiac arrest while playing football. Gwen has since joined the campaign and has helped raise awareness in her local area, including during Heart Rhythm Week 2013. Liam has completed in several marathons in recent years, including the Virgin London Marathon last year! We wish him all the best in his endeavours. You can support Liam here.
Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL
A-A Patients Day 2013: Know the difference, make a difference: sudden cardiac arrest explained
Our annual Patients Day took place on Sunday 20 October 2013. Birmingham International Convention Centre (ICC) was our chosen venue for the second consecutive year. The theme of this year’s meeting was Know the Difference, Make a Difference: sudden cardiac arrest explained and borrowed from Hearts & Goals, our campaign to tackle the UK’s biggest killer: sudden cardiac arrest. More than 25 patients and carers attended the free meeting to learn more about drug therapy, devices and heart rhythm disorders in general. Attendees were confident putting questions on all aspects of heart rhythm care to the leading UK heart rhythm specialists who gave presentations throughout the course of the day. Some of our favourite questions included “what role does the arrhythmia nurse play in my treatment?” and “How can I find out more about travelling with an implantable device?”
What questions would you put to a panel of UK arrhythmia experts? We have tools to prepare patients and their carers for meetings with their GP or cardiologist available on our website. As part of the Hearts and Goals campaign, to increase the number of public access defibrillators within communities and to raise awareness of the difference a bystander could make in an emergency, Keith Bromwich, WMAS Emergency Care Practitioner and
Paramedic came along to give a demonstration of how to perform CPR with the use of an AED. Keith gave a very detailed demonstration, made all the more interesting and easy to understand by the humour he managed to inject into what is a very serious subject. The whole session was extremely well received and the feedback has been excellent with 90% of the delegates stating that following Keith’s demonstration they were more confident about what they could do in an the event of a sudden cardiac arrest. A brilliant end to a brilliant day! We were certainly not expecting to meet so many experts during the course of the day, both patient and professional! Thank you to everyone who came, we look forward to bringing you news of next year’s meeting in the coming months and bringing you interviews with the experts who attended on the day very soon!
Your feedback on the day “I feel much more confident about how I could help in an emergency.” “The talks were very easy to understand and I feel more able to approach my GP about possible treatments now.” “A great venue and very easy to find.” “My condition doesn’t feel so scary anymore.”
✆ +44 (0) 1789 450 787 @ info@heartrhythmcharity.org.uk
➚ www.heartrhythmcharity.org.uk
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Frequently Asked Questions
FAQs
Tachycardia Supraventricular formation (SVT) Patient In
I’ve got SVT. Should I go on a new diet in 2014? It is the time of year when everywhere you look, diets (traditional or newfangled) are being promoted in the media. Everyone’s physiology is different, so there are no hard and fast rules when it comes to diet for individuals. However, some people with conditions like supraventricular tachycardia (SVT) and atrial fibrillation (AF) may want to avoid foods containing a chemical called tyramine which can trigger their condition.
quality of nosis, treatment and ythmias) understanding, diag rders (cardiac arrh Promoting better heart rhythm diso by d ecte aff e life for thos
harity.org.uk ythmc www.heartrh No. 1107496 Registered Charity
My wife’s got a heart rhythm problem - Is there anything I can do to make her life easier?
This includes: • foods that can cause heartburn, especially pickles, sauces and condiments • dairy products such as cheese, sour cream and yoghurt (ricotta, cottage cheese, cream cheese and some other soft cheeses are fine) • broad beans, green bean pods, tempeh (=soya loaf), peanuts, brazil nuts and coconuts • pork and processed or cured meats • some fresh produce: bananas, pineapple, aubergines, figs, red plums and raspberries.
When your partner, or someone you care about, has a heart rhythm problem it is natural to want to help. In general it is about acknowledging that the person has an arrhythmia problem that may affect some aspects of life and that could impact on others e.g. work and physical activity. Although the nature of the support that a person can give to a person with an arrhythmia will depend upon the exact problem, to some extent, the common theme is that these people need the understanding of all those around them and support (potentially both emotional and physical) in everything they try to do.
But remember that these do not affect everyone the same way, and some are very good for certain things e.g. bananas as a source of potassium, so if you have an arrhythmia it is always advisable to seek medical advice before embarking on a new diet.
I have been diagnosed with SVT – Is it safe for me to exercise?
My partner has SVT: Will our baby inherit it? The natural question to ask when we have an abnormal heart rhythm such as SVT is will my children inherit it. Although everything about us is determined by our genes, it is fairly rare for these rhythm problems to be truly hereditary. In the future we may have a better idea about this but for now people with SVT should not worry about passing it on. If their children develop symptoms that suggest a heart rhythm problem then they should be checked out in the same way as anyone else.
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It is worth checking with your doctor on this, but in general it is perfectly safe to exercise if you have been diagnosed with SVT. If you are not always in an abnormal rhythm then even if you did have an episode during exercise it is likely that you would just need to stop and rest. If you are in an abnormal rhythm all of the time then your ability to exercise may not be as good as when you are in a normal rhythm and you will find that you will know when you are tired and should stop exercising. You are very unlikely to do any damage to your heart by exercising and, quite the opposite, we know that exercise is good for us all, particularly after the inevitable indulgences over Christmas and the New Year!
Sumera’s story – supraventricular tachycardia and pregnancy
Sumera, from Multan, Pakistan, shared her experiences with us after learning more about supraventricular tachycardia (SVT) from a link posted on our Facebook page. Sumera was diagnosed with SVT during her third pregnancy. “I was first aware of a problem with my heart in 2010 when I noticed my heart racing, on one occasion up to 190 BPM. I was pregnant with my third child at the time and the episode led to me fainting twice. This episode took place in the sixth month of pregnancy, a month before this I had chicken pox. Unfortunately the gynecologist who I was referred to was largely unaware of heart rhythm disorders and my symptoms went unchecked by both her and another specialist. My ECG was not recorded even though I continued to feel dizzy, was experiencing palpitations and felt very tired. I had concerns for the health of my unborn baby. I was then sent to another local hospital where I received my diagnosis with SVT. I was prescribed a course of medication that was successful in reducing my heart rate and symptoms. My gynecologist here was well placed to provide treatment, being especially selected for cardiac patients. I went on to deliver a healthy baby girl naturally. Happy with the treatment I was receiving and more importantly happy in myself, I continued taking the prescribed medication. Shortly afterwards, my husband and I relocated to another town around 350 miles away and I became pregnant once again. This pregnancy was more difficult and I experienced three episodes of SVT, however each of these was settled with adenosine.
I had no concerns about giving birth with SVT for a second time, but then suddenly at 34 weeks my gynecologist advised that I would be best placed to give birth at the hospital where I delivered my first baby to reduce the risk of complications, a 12 hour drive away. My cardiologist, however, was unconvinced and advised that there was no need. In the end, I elected for a c-section. My gynecologist did not support this however, and threatened that another patient with SVT had died during childbirth. I was so terribly distressed when my gynecologist refused to handle my second pregnancy, although as of September 2013 I am now much happier with a new six-week-old baby girl, taking a new medication to control my episodes of SVT. There is so little awareness of heart rhythm disorders in Pakistan and I support the great work of Arrhythmia Alliance in raising awareness among patients and healthcare professionals. As an example of lack of awareness in my country, during my first episode of SVT, the nurse expressed surprise that my pulse rate was racing while my blood pressure was very low, while typical of pregnancy this was also indicative of the presence of SVT. My cardiologist highlighted how lucky I was that the SVT was picked up on an ECG trace, hundreds of others must not be so lucky.” Sumera, Multan, Pakistan, September 2013. Sumera now has four healthy children, aged 9, 7, 3 and 1. Can you relate to Sumera’s symptoms and feelings of unease? Please share your story to help other people who may be awaiting treatment or have questions about devices or medication for their heart rhythm disorder.
Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL
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Thank you to our A-A supporters We would like to say a BIG HEARTY thank you to everyone who has supported A-A throughout 2013. Whether you have donated, fundraised or volunteered, we would not be here without you!
Jemma Lamble
From marathon runs to worm charming, here is what some of you have been up to: Ian Lancashire kick started fundraising in 2013, by organising an answer and question session with former Stockport County goalkeeper Alan Ogley. Over £400 was raised from the event. Thank you. On St Patrick’s Day Jason Ralphs was pounding the streets of Hampshire by participating in the Fleet Half Marathon, raising over £150. A fantastic effort. James Deeming took on the challenge of the Wolf Run, a 10k off-road run featuring a series of man-made and natural obstacles located throughout the course, raising over £130. It sounds like great fun! Fiona Fochard walked 50km in the Thames Path Challenge and raised over £300. It sounds exhausting, thank you.
Sean Rodgers and Cam Porter after completing the Hadrians Wall run
Cameron Porter and Sean Rodgers ran approximately 69 miles along Hadrian’s Wall, raising almost £400. A brilliant achievement! Ed Brown joined 37,000 other runners in the London Marathon and raised over £750 for A-A. We are extremely grateful, thank you.
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Ian Dickinson running in the Marathon
Ian Dickinson raised £1,250 by participating in the Manchester Marathon in memory of his father. You must be delighted with your achievements, thank you.
Becky Hughes and Tom Cruttwell raised over £600 by participating Becky Hughes and Tom Crutwell participated in the in the Stratford Half Marathon Stratford Half Marathon. A great achievement for a loyal employee! Peter Jones Enterprise Academy donated the monies they raised from their project to A-A. Thank you Jennifer McCutcheon, who ran in the Edinburgh 10km in memory of her husband and raised over £2,000. A fantastic achievement, thank you. Stockport County Worm Charming Team consisting of Caroline and Andy Burt, Ian Lancashire, Phil and Christine Robinson, Pete and Sue Towey and Paul Dickinson raised over £100 by charming worms. Sounds like a unique challenge. Nigel Hodges cycled 140 miles from Whitehaven to Newcastle and raised over £180. We are extremely grateful. Thank you to everyone who donated to Arrhythmia Alliance in lieu of flowers in memory of John West.
✆ +44 (0) 1789 450 787 @ info@heartrhythmcharity.org.uk
Thank you to Amelia MurrayEggleton who has organised a number of events raising £560. Thank you. Marie Sorrell who, participated in the Swansea Bay 10km raising almost £200. It sounds exhausting, thank you. Huge thanks to Jemma Lamble and friends took part in the Tough Mudder – an endurance challenge consisting of hills, rivers, steep wooded climbs and a few ostacles over a 10-12 mile course, raising over £160. Javier Rodriquez after the bike ride
Javier Rodriquez cycled from Paris to London and raised over £500. Fantastic, thank you. Christina Gabbitas has participated in a number of 10km runs and has raised £150 for A-A. Thank you. Apologies if we have not included you in our list of fundraisers, we are extremely grateful for your support. If you would like your fundraising to appear in the next newsletter, please do get in touch. Alternatively if you would like to fundraise for A-A and would like some fundraising ideas please email fundraising@heartrhythmcharity.org.uk
➚ www.heartrhythmcharity.org.uk
SAVE THE DATE: Heart Rhythm Week, 2-8 June 2014
Arrhythmia Alliance’s Heart Rhythm Week 2013 ran from 3-9 June 2013 and was the most successful awareness week to date. The theme of the week was taken from our Hearts & Goals campaign, which supports the placement of lifesaving public-access defibrillators in communities across the UK. With sudden cardiac arrest survivor Fabrice Muamba at the helm, the week brought together new and old supporters in the fight against the UK’s biggest killer. As part of this year’s awareness week, we launched a new set of resources that were shared with our patient and clinician members. At Jersey General Hospital, the arrhythmia nurses were kept busy recording ECGs throughout the course of the week. The hospital was chosen to help out with the trial of an innovative new Heart Monitor, the AliveECG. Using a simple monitor, attached to an iPhone, nurses were able to test 1,000 people for signs of heart rhythm disorders. The innovative devices attracted a great deal of interest in the local media; promotion was so successful that many local residents who had seen the news coverage were unable to have their pulse rate monitored as the arrhythmias nurses had reached full capacity! The outcome of the pulse screening was that ten people were detected with signs of heart rhythm disorders, most of these with atrial fibrillation or AF (the most common heart rhythm disorder). These patients were referred to their GP for further tests. A great result and one of our favourite Heart Rhythm Week pioneers during last year’s event.
Are you trialling the AliveCor heart monitor device for us? How are you getting on? We would love to hear from you!
The Pulse Newsletter Do you think we could do something better? Please let us know. We are working hard to provide the best level of support to our members and we cannot do this without you! Your feedback on our newsletter is invaluable and we have prepared an anonymous survey that you can complete. Please take two minutes to complete our anonymous survey to make our next newsletter even better!
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Update your details To ensure you are kept up to date with the latest news, events and information from Arrhythmia Alliance, please inform us of any changes to your email or postal address. Please download our update form and return to info@heartrhythmcharity.org.uk or post to Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL. Information received will support us in our work and the services we offer.
Download update form
Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL
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Introducing the Reveal Linq™ ICM
Implantable loop recorders (ILRs) record on a continuous loop for up to three years. Conventional ILRs are the size of a USB stick. They are placed under the skin on the left hand side of a patient’s chest and they capture the ongoing activity of the heart. The Reveal Linq™ is a diagnostic tool that will monitor the heart’s electrical activity, record any irregular episodes, and send them automatically to a heart rhythm specialist at a designated hospital. This clinician would assess the information and identify the cause of the symptoms. This device offers the same benefits as a traditional ILR but is a tenth of the size. It is more comfortable and much less noticeable under the skin.
A new implantable cardiac monitor (ICM) has been developed for people who are seeking answers about episodes of palpitations which have not been picked up by conventional diagnostic tests. The first implantation took place earlier this year. Isolated ectopic beats and short lived episodes of palpitations are not serious, but if you have frequent or long lasting episodes of palpitations, these may indicate an underlying arrhythmia. Sometimes, however, arrhythmias can elude diagnostic tests. You may suspect that you have an arrhythmia, but clinicians may be difficult to convince if they cannot confirm a diagnosis of their own through tests such as an ECG or a 24 hour monitor.
“It was fantastic to be the first in the UK to implant the new device. From my perspective it was a much simpler and quicker procedure and it was very easy to do.” Dr Nick Linker, Consultant Cardiologist, James Cook Hospital, Middlesbrough If an arrhythmia is ignored, it can have serious or even fatal consequences. A doctor who is unable to diagnose the cause of your symptoms may consider an insertable cardiac monitor or loop recorder.
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As the Reveal Linq™ ICM is so much smaller and easier to implant, it is intended that the procedure could be performed in a treatment room rather than a theatre setting. Implanting the device requires an incision of less than 1cm which can then be closed easily with medical adhesive, a thin adhesive strip or a single suture. Fitting Reveal Linq™ will take just a few minutes, with positive implications for waiting lists. In some cases the procedure could be undertaken on first attendance at a clinic, saving delay in reaching a diagnosis and the inconvenience of repeat visits. Dr Nick Linker There would be no need to use a separate device to record an episode as the ICM is remotely monitored, wirelessly, through a receiver in your house. Any unusual heart activity will be transmitted via a 3G signal to a secure system which will alert a heart rhythm specialist. You would then be contacted if necessary. Inevitably this will provide more peace of mind for a patient.
Reveal Linq™ can be removed easily once it has confirmed whether or not there is an arrhythmia.
✆ +44 (0) 1789 450 787 @ info@heartrhythmcharity.org.uk
➚ www.heartrhythmcharity.org.uk
News Revolutionary pacemaker implanted In January, the world’s first retrievable leadless pacemaker was implanted at St. Bartholomew’s Hospital in London by Professor Richard Schilling. The Nanostim™ leadless pacemaker is designed to be placed directly in the heart without the visible surgical pocket, scar and insulated leads required for conventional pacemakers. The device offers a less invasive approach for physicians compared to traditional pacemaker procedures. The device is designed to be fully retrievable so that it can be readily repositioned throughout the implant procedure and later retrieved if necessary.
“Nanostim™ is one of the most significant advancements in cardiology and pacemaker technology.” Professor Richard Schilling, Consultant Cardiologist and Electrophysiologist, St Bartholomew’s Hospital, London This miniature pacemaker offers the potential for reduced complications like infection and aesthetic benefits over conventional pacemakers, in addition to quicker recovery times. Nanostim™ is less than a tenth of the size of a conventional pacemaker. The small size of the device and lack of a surgical pocket, coupled with the exclusion of a lead, improves patient comfort and can reduce complications, including device pocket-related
infection and lead failure. The elimination of the visible lump and scar at a conventional pacemaker’s implant site, in addition to the removal of patient activity restrictions that may prevent the dislodgement or damage to a conventional lead, will potentially improve the quality of life for patients with this technology by allowing most to continue living active, uninhibited lifestyles. Total implant procedure time is around half an hour. Even with miniaturisation, the device battery is expected to have an average lifespan of more than nine years at 100% pacing, or more than 13 years at 50% pacing. The Nanostim™ leadless pacemaker recently received “CE Mark” approval and will be rolled out in the UK in the coming months.
Atrial fibrillation (AF) patient Maureen was the first patient in the UK to be fitted with the NanostimTM leadless pacemaker. Here she shares her story. It has made a difference to my life already. For example, after a recent pacing clinic appointment, my husband and I passed Westfield shopping centre in Stratford and decided to grab lunch. You have to remember I have a stick and was also pushing a walking frame. In the past, if I had walked through the shopping centre, I would have had to stop. I’d be sweating and out of breath. I used to become out of breath at even very mild inclines, the kinds most people wouldn’t even notice. This time, I walked through the shopping centre without stopping and we went for lunch at Jamie’s restaurant. I was still tired, but nothing like the fatigue before my pacemaker was fitted. Since I’ve had a pacemaker fitted it’s also helped me mentally, as I know it will kick in if it’s needed. I also haven’t had a giddy spell since, which is wonderful. I have a few more appointments at the pacing clinic and as it’s a new device I will be going in a bit more often, but that’s fine by me. Read Maureen’s story in full
Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL
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News in brief Whole Hearted was launched last year to improve the disparity between implant rates of implantable cardioverter defibrillators (ICDs) across the UK. Findings from a report launched alongside the campaign show that those people living in London are much more likely to receive a lifesaving internal cardioverter defibrillator (113 device implants per thousand population) compared to those in Lancashire and Cumbria (42 device implants per thousand population). These figures are not a reflection of difference between rates of diagnosis, but rather an inequity, in access to treatment across the UK. Overall, the UK is third from the bottom in the European league table of implantable cardioverterdefibrillator implants. Trudie Lobban MBE, Founder and Trustee of Arrhythmia Alliance, said: “Despite the advances made in recent years in tackling vascular heart attacks, problems with the electrical wiring of the heart have not received the same attention. The result is that we are only treating half of the heart’s problems, and we are falling behind the rest of Europe, allowing patients to die needlessly. We have the technology to ensure tens of thousands of people can live. We just have to use it.” Are you fitted with an implantable cardioverterdefibrillator? Have you benefited from this device? Why not share your story or join our HealthUnlocked forum to help others awaiting an implant.
Founder & Trustee elected as FRCP Edinburgh Fellow Arrhythmia Alliance is pleased to announce that our Founder & Trustee, Trudie Lobban MBE, has been elected as a Fellow of the Royal College of Physicians of Edinburgh. The award recognises Trudie’s commitment to improving the diagnosis, treatment and quality of life for all those affected by arrhythmias and syncope. Trudie said: “I am hugely honoured to be welcomed as a Fellow of the Royal College of Physicians of Edinburgh. It is a significant achievement for the Arrhythmia Alliance Group.” BBC Radio 4 Appeal Arrhythmia Alliance was successful in winning a BBC Radio 4 Charity Appeal in 2013.
We were nominated alongside three other local charities and thanks to your votes came second and scooped the £3000 prize!
The Appeal was broadcast on Sunday 24 November 2013 with repeats on Thursday 28, with member Heather Richards lending her voice to our appeal for Hearts & Goals. Heather lost her husband Graham to sudden cardiac arrest in August 2012 and joined our campaign after her son brought one of our resources home from school.
Thank you for your support. The prize fund will be used to help us in our work to provide education and awareness as part of Hearts & Goals in the Stratfordupon-Avon community.
Thank you to Heather and thank you to everyone who donated to the appeal. Proceeds raised will be used to support the placement of AEDs at locations across the UK.
Lloyds Community Fund Thank you to everyone who voted for Arrhythmia Alliance in the Lloyds Community Fund for the Stratford-upon-Avon community.
Listen to the appeal in full at http://bbc.in/MHwU6f
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✆ +44 (0) 1789 450 787 @ info@heartrhythmcharity.org.uk
➚ www.heartrhythmcharity.org.uk
Support Services heart patients (with heart failure or who are diagnosed with coronary heart disease and fitted with a CRT pacemaker or CRT ICD) or ICD patients. You can learn more about how they work and operate on our website here.
Interested in establishing your own patient support group? Download our guide here. Other meetings new for 2013 include Andover, Hampshire and Coventry. Andover was the first patient group established in the south central region, for which we are very proud! We have welcomed many more affiliate groups in the past year. In early 2013 we secured funding to establish a new patient support group in Stratford-upon-Avon. The group will meet quarterly and is led by local Consultant Cardiologist Doctor Faizel Osman. Faizel works at University Hospital Coventry and Warwickshire and specialises in catheter ablation for cardiac arrhythmias. The group met for the first time on Wednesday 4 December 2o13 with more than twenty patients and their carers in attendance. Each of the patient support groups that we work with is either nurse, doctor, GP or patient led; each bringing very different sets of expertise to the meetings they head up. Benefits of attending a meeting include: - Learning about treatment options from other patients and their carers - Sharing experiences and put questions to the experts in the field of heart rhythm care who practice locally to you - First-hand advice on the treatment options recommended or of interest to you
What do you think is the best thing about patient support groups, do you attend one or would you like to learn more about your nearest? One of the biggest patient support groups operates out of Guys and St Thomas’s Hospital in London and is open to implantable cardioverter defibrillator (ICD) patients and carers. The patient support groups we are affiliated to are grouped together dependent on their audience, whether atrial fibrillation (the most common heart rhythm disorder), general arrhythmia,
Interested in becoming a patient lead? Have you benefited from effective treatment and are you keen to share your experiences with others who are newly diagnosed or are about to undergo the same procedure at the same hospital as you? Email communications@heartrhythmcharity.org.uk to learn more about becoming a patient lead for a support group locally to where you live. Sam (pictured) is the patient lead for the Milton Keynes ICD support group; he was driven on to join the support group after he himself was fitted with an ICD. We can provide you with all the support required and promote the first meeting of any new support group in your local media.
Heart rhythm disorder support group Gain advice on management and treatment of heart rhythm disorders Do you have, or care for someone with, a heart rhythm disorder? Contact Daisy to learn more about the group nearest to where you live. Email communications@heartrhythmcharity.org.uk, or call 01789 451829. www.heartrhythmcharity.org.uk
Arrhythmia Alliance, PO Box 3697, Stratford upon Avon, Warwickshire, CV37 8YL
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Awards If you would like an educational session at your school, call us now on 01789 450 787 West Midlands Ambulance Service award On Thursday 7 November 2013, Defibs Save Lives Project Manager Caroline Holmes travelled to the Moat House Hotel, Stoke on Trent to pick up a prestigious award from West Midlands Ambulance Service. Arrhythmia Alliance’s Events Associate Hattie Byron honoured to accept the cheque from Store Manager John Parker.
Stratford upon Avon, 20 December 2013
Arrhythmia Alliance was thrilled to win £1000 from Tesco PLC to help us continue our work through Hearts & Goals in schools across Warwickshire. The kind donation is from the Tesco Charity Trust Community Awards Scheme, which provides grants to the local communities around the UK in which Tesco has a presence to support both children’s welfare and children’s education locally. Thanks to Tesco’s support, more staff and pupils will benefit from increased awareness of the UK’s biggest killer; sudden cardiac arrest. The donation will support our work to provide education on our Know Your Pulse campaign. A simple, 30 second pulse check is the simplest way to detect an abnormal, potentially life threatening heart rhythm that may lead to sudden cardiac arrest.
Arrhythmia Alliance was honoured to receive a Community Initiative Training and Defibrillator Award in recognition of our work through Hearts & Goals across the West Midlands region. Trudie Lobban MBE, Arrhythmia Alliance Founder and Trustee said: “We are very proud to receive the Community Initiative award for our Hearts & Goals campaign. Through the campaign we have helped communities across the UK place more than 160 AEDs. “It is a real honour to be recognised by our local ambulance service in this way.” We owe part of our success to Alcester resident Ann Delaney. Ann joined our lifesaving campaign with firsthand knowledge of the lifesaving difference that can be made, her brother suffered a sudden cardiac arrest and survived thanks to early CPR and prompt defibrillation from an AED. Starting in 2012, Ann embarked on a tireless fundraising drive and we have helped her to place seven defibrillators at locations across Alcester. In recognition of her achievements, we were proud to announce Ann as the Arrhythmia Alliance Volunteer of the Year in December 2013. Here she is pictured meeting Caroline and accepting her award.
Our Mini-Anne CPR and defibrillator training kit forms the constituent part of our schools programme for the school to practice these life-saving skills, in order to increase knowledge and confidence in an emergency. We hope that through education and awareness, individuals, schools and community groups will feel empowered to fundraise for their own defibrillator to place in the community. An AED when used alongside CPR dramatically increases the chance of survival from 9% to 50% when compared to CPR alone. We would like to reassure you that we will not share personal data with any third party outside Arrhythmia Alliance, or its sister charities AF Association and STARS. We comply strictly with the terms of Data Protection Act 1998. If you no longer wish to receive The Pulse newsletter, e-bulletins, or if you wish to have your personal details removed from our database altogether, please let us know and we will amend our database accordingly. Please email info@heartrhythmcharity.org.uk or phone 01789 450787 if you wish to have your details removed from our database.
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✆ +44 (0) 1789 450 787 @ info@heartrhythmcharity.org.uk ➚ www.heartrhythmcharity.org.uk