AF Association Spring Newsletter 2016 by www.heartrhythmalliance.org

Today

Issue 15, Spring 2016

Providing information, support and access to established, new or innovative treatments for atrial fibrillation

Heart Rhythm Week: 6-12 June 2016 For Heart Rhythm Week 2015, our supporters joined us and helped raise awareness of how to Detect, Protect and Correct heart rhythm disorders. Awareness events took place across the UK & internationally, and Arrhythmia Alliance launched its manifesto on sudden cardiac arrest - Now is the Time for action to save lives. The full report can be viewed here. This year we have lots of exciting events planned - details will become available soon so keep checking back on our website for regular updates. Watch this space! In the meantime, there are many ways to get involved and support Heart Rhythm Week this year. 1) Share information: Give information to your friends and family. Resources can be downloaded from the Heart Rhythm Week website. 2) Awareness displays: Display information in your local community by organising an awareness display in your local medical centre, nursery, hospital or leisure centre. AF Association resources can be downloaded from the AF Association website. 3) Share your story: Heart Rhythm Week generates a lot of media interest nationally, regionally as well as locally, share your story to help others. Talk to our Patient Services team and learn how your account can change the lives and support many others affected by arrhythmias. We are here to help: +44 (0) 1789 867 502 or info@afa.org.uk. 4) Volunteer : Volunteer your time and support a pulse check day in your local leisure centre, clinic or workplace. 5) Fundraise: Donate via our website or text HRWK15 £3 to 70070. For fundraising ideas and support please click here. Together, we can work to secure early diagnosis and improve outcomes for the many millions of people across the globe affected by arrhythmias.

For further information on how you can get involved in Heart Rhythm Week, please contact Nikki Bennett or +44 (0) 1789 867 523.

INSIDE THIS ISSUE: • Dabigatran etexilate Reversal agent now available • Choosing an anticoagulant The NICE Guidelines and patient choice • Understanding the symptoms of AF Examples of both visible and invisible symptoms • Dental treatment for AF patients A few tips to consider

In Pursuit of Excellence in the Prevention of AF-related Stroke In January 2016, AF Association released the ‘In Pursuit of Excellence in the Prevention of AF-related Stroke’ report. The report captures insights and discussions from a multi-stakeholder group, generated as part of a roundtable meeting and through follow-ups with experts, to assess the current situation for the management of AF patients in England. It covers challenges to optimal care, best practice examples and practical solutions. The report includes an overview of the impact of AF-related stroke and a look at the current situation around the uptake of NOACs in England. Also included are common misconceptions around anticoagulation and NOACs specifically, which may be based on outdated perceptions and do not align with national guidance. Misconception: Decisions about the right therapy should only be made by the primary care-giver for the patient Initiation of anticoagulation may take place in primary or secondary care for AF patients, but there should be no limitations or restrictions on what anticoagulation the patient is offered. If a patient is suitable for anticoagulation with a NOAC, then they should be able to access this as a first-line option. Misconception: It is not important to give AF patients alternative therapy options Patient understanding creates better adherence and leads to better outcomes, however there may be significant gaps in the knowledge of AF patients around the need to anticoagulate and the choice available. NICE states that clinicians should discuss the options for anticoagulation with the patient and base the choice on their clinical features and preferences. Misconception: Most patients are well managed on warfarin for prevention of AF-related stroke Acceptance of the importance of patient choice and appropriate medication for specific patients is needed to ensure AF patients are protected. Confidence and

experience with an older treatment, such as warfarin, can mean clinicians may be more inclined to prescribe it to an AF patient, even when a NOAC may be more suitable for the patient needs. Misconception: It is not cost-effective to put patients on NOACs in comparison to warfarin NICE has identified NOACs as a cost-effective option for the prevention of AF-related stroke, and they should be available to AF patients. While warfarin is less costly to initiate, the costs for those AF patients who are poorly mananged on warfarin may be significant. Misconception: Warfarin is safer for AF patients than the NOACs Healthcare professional concerns with the lack of a licensed reversal agent, or overemphasis on bleeding risk, may result in suitable patients for NOACs being put onto older therapies such as warfarin. However, there are steps that can be taken to reverse the effects of the NOACs in the event of major or minor bleed, including stopping treatment.

Go online: www.afa.org.uk • info@afa.org.uk

3 Misconception: AF patient adherence is better with warfarin There are a number of benefits of NOACs for AF patients over warfarin, including less food and drug interactions and the removal of regular INR monitoring. These benefits mean the NOACs may be more convenient and improve quality of life for patients, and so create better adherence. To read the full report please visit our website: www.afa.org.uk.

In the report, significant variation of choice of anticoagulation can be seen based on where patients live. This is demonstrated by the anticoagulation map below, showing a significant variance in uptake of NOACs across CCGs.

Use of NOACs (compared to warfarin) Anticogulation with NOACs

London

30% and above 20% to 30% 10% to 20% 1% to 10%

“

With an ageing population, atrial fibrillation (AF), a common cardiac rhythm disorder, is increasing and will only continue to do so. As one of the biggest independent risk factors for stroke, as well as the fact that AF-related strokes are more severe, inappropriate management of this condition can have devastating consequences. While we have come a long way in awareness, detection and management of this condition, it cannot be ignored that more needs to be done to ensure optimal protection for patients against AF-related stroke. Trudie Lobban MBE, Founder & CEO

Helpline: 01789 867502

Choosing an anticoagulant After being diagnosed with AF, the first big decision that many patients face is choosing an anticoagulant. Currently there are five options available: warfarin, apixaban, dabigatran, edoxaban and rivaroxaban. The NICE atrial fibrillation guidelines (CG180) stipulate that the options for anticoagulation should be discussed with the person and their choice of anticoagulant should be based on their clinical features and preferences. NICE has approved the non-vitamin K antagonist oral anticoagulants as alternative treatment options to warfarin in the prevention of AF-related stroke. They should especially be considered for patients who cannot taken vitamin K antagonists (VKAs), those who have have difficulty maintaining a stable INR level and those taking aspirin for AF-related stroke prevention. Warfarin has been available for many years and is very widely prescribed. Many patients are happy to take warfarin as the regular INR monitoring offers them reassurance. If it has been suggested to you that you should take a newer anticoagulant but you are unsure or do not wish to change, it is best to discuss your concerns with your doctor. If you are are taking warfarin, with no complications or side effects, then it may be unneccessary to switch to an alternative.

Dabigratran - reversal agent now available

Apixaban, dabigatran, edoxaban and rivaroxaban are non-vitamin K antagonist oral anticoagulants but are equally as effective as warfarin. They have been designed to overcome the limitations of warfarin, for example they do not require routine monitoring or ongoing dose changes and have very few dietary restrictions. You may wish to take one of the newer anticoagulants because of lifestyle factors, contraindications or if you would find it difficult to attend regular testing appointments. If you are experiencing difficulty in obtaining the anticoagulant of your choice, or if you would like further advice and information, please do not hesitate to contact the Patient Services team by email: info@afa.org.uk or call +44 (0) 1789 867502.

Download our new anticoagulant guide

In December 2015, idarucizumab (Praxbind) was launched in the UK as the specific reversal agent for dabigatran (Pradaxa). It is for use in emergency surgery/urgent procedures and in life threatening or uncontrolled bleeding. It is proposed that Praxbind is restricted to hospital use only.

Dabigratran - reversal agent now available

As Praxbind offers immediate reversal, this may give reassurance to those who are currently taking dabigatran or to those are considering it as an option. There are four other anticoagulants available: apixaban, edoxaban, rivaroxaban and warfarin. Whilst the other non-vitamin K antagonist oral anticoagulants do not currently have reversal agents, their efficacy and safety under evaluation is quite similar to warfarin. Warfarin is reversable with vitamin K. For more information regarding anticoagulation please email: info@afa.org.uk or call: +44 (0) 1789 867 502

If you would like to learn more about the importance of anticoagulation therapy for people diagnosed with AF then our booklet - ‘A Guide for Patients Prescribed Oral Anticoagulant Therapy’ is for you. To view and download the booklet please visit our website.

Go online: www.afa.org.uk • info@afa.org.uk

Explaining your AF to loved ones Because there are few or no visual signs that someone has AF, it can be difficult for others to appreciate what someone with AF is going through. Psychologically the heart is what keeps us alive and coming to terms with AF and a possible risk of AF-related stroke can take time for both patient and carer. It can be tough to understand the impact of AF because it is not a visible condition, yet AF can have many debilitating symptoms and can vary widely from person to person. Some examples of both visible and invisible symptoms are shown below:

Invisible symptoms

Visible symptoms Sweating Blackouts Shortness of breath

Fatigue Chest pain Dizziness Palpitations Insomnia Confusion Emotional distress Shortness of breath

Clearly the number of invisible symptoms outweigh the number of visible symptoms. This may be helpful in demonstrating that just because you do not look ill, does not mean that you are not. If at any time you start experiencing new symptoms it is advisable to make an appointment with your doctor for a check-up. If you would like more information or advice, please contact the Patient Services Team by email: info@afa.org.uk or call: +44 (0) 1789 867 502. We asked you how you would describe your AF to those who don’t have the condition. Here are some of the responses:

“Like roadrunner is beep-beeping through the electric supply in the heart, then dances for a bit, then walks, then beep-beep off he runs again” “A baby bird trying to fly with a broken wing, just flutters and flutters constantly” “Unpredictable, intrusive, exhausting and debilitating” “Like a hamster, on drugs, that’s running on a wonky wheel held on by an ill-fitted screw to the side of its cage”

Helpline: 01789 867502

News from Alivecor Meet Kardia - a proactive approach to heart health. We have exciting news to share! We are thrilled to announce Kardia, the new name for all AliveCor heart health products and services. The AliveCor Mobile ECG is now Kardia Mobile and the AliveECG app is now Kardia. We can’t wait for you to see what’s new and take advantage of the features that are now available above and beyond your current AliveCor experience, including: • Voice memos to capture how you are feeling as you take an ECG recording • Integration with the Apple Health app and Google Fit app • Kardia Band for Apple Watch Read on to learn more! We’re Listening With the new Kardia app, we’ll ask “how are you feeling?” This will allow you to speak out loud to capture your symptoms and activities. The app will automatically transcribe what you say into a description and tags that will appear alongside each recording. Activity Data Kardia offers integration with Apple’s Health app and Google Fit, collecting heart rate and other activity data to provide deeper context to your ECG. You can configure this integration according to your personal preferences. Kardia Band An alternative to Kardia Mobile, the Kardia Band for Apple Watch enables you to record your ECG and capture a voice memo discreetly from your wrist. Kardia Band is pending 510k clearance and CE mark but is not yet for sale. Sign up here to be the first to know when Kardia Band is available. You Have Options The Kardia app now offers two levels of service: Kardia Basic offers unlimited ECG recordings with voice memos, unlimited instant ECG analysis, integration with Health app and Google Fit, and ECG experts (for an additional fee). Kardia Basic also allows you to save and share your most recent ECG recording. Kardia Premium deepens your understanding of your heart health by allowing you to store and share

unlimited ECG data. Kardia Premium also provides personalised reports using Health app and Google fit data to provide insights and advice, designed to help you care for your heart. As a thank you for your support and loyalty, all existing AliveCor customers will always be able to access their ongoing, detailed ECG recording history in the Journal feature of the Kardia app. Until September 30, all existing and new customers can try Kardia Premium free. We are so excited about Kardia’s proactive heart health capabilities. We hope you’ll learn more about Kardia, and give it a try. To your continued good health, Vic and the AliveCor Team

In January 2016, AliveCor announced a strategic partnership with LifeWatch, a leading provider of medical solutions and remote diagnostic monitoring services. This means that Kardia will now be integrated into LifeWatch’s Cardiac Event Monitoring service. Remote monitoring allows patients to be in touch with their physicians, anytime, anywhere and most importantly outside of the care setting. This also lessens the burden on the healthcare system, enables healthcare providers to monitor patients, and help those patients retain their independence and control over their heart health. If you donate £65 to AF Association, we will send you your very own Kardia mobile ECG hand held device.

*Limited stock. Please call +44 (0)1789 867 502 first to check availability.

To donate please click here.

Go online: www.afa.org.uk • info@afa.org.uk

AF Aware Week -Share your story Without your stories we have no voice... AF Aware Week, in November, helps raise awareness of atrial fibrillation and highlights the importance of detecting via a simple pulse check, protecting against AF-related stroke through the use of appropriate anticoagulation and ultimately correcting the heart rhythm. There are many ways to get involved in AF Aware Week including sharing your story. If you would be interested in sharing your story to help others going through similar experiences please email: info@afa.org.uk or call: +44 (0) 1789 867 502.

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To read patient and carer stories please visit the AF Association website.

AF Association getting social AF Association is able to offer patients the opportunity to connect with others to get advice, support or simply chat with people who understand their perspective and can offer some new insight by giving their own. To join the discussion, please visit our social media channels: www.facebook.com/atrialfibrillation www.twitter.com/AtrialFibUK

www.healthunlocked.com/afassociation www.instagram.com/afassociation www.linkedin.com/company/atrial-fibrillation-association

Please donate to AF Association AF Association relies on donations to enable us to maintain our helpline, resources and support services to patients and carers. Please support us, so that we can continue to support you. Please consider adding GiftAid to your donations. GiftAid adds a massive 25% to your donation at no cost to you. Every penny really does make a difference. GiftAid can be arranged verbally, or alternatively, please contact us for a GiftAid form. You can donate by calling: +44 (0) 1789 867 502 or via our website.

Helpline: 01789 867502

David’s Story - Running with AF simple condition became debilitating both mentally and physically as AF episodes re-occurred more frequently. I was worried, my girlfriend was fearful; I knew I couldn’t carry on in this way.

“...someone working on one of my vital organs scared me”

David was diagnosed with AF in 2008 after he continued to train hard, running through illness and a stressful time in his life. Here he shares his experiences of his AF diagnosis and treatment.

p until 2008 I was a fit, healthy guy who ran 20-30 miles a week and a marathon at least yearly; my best being a 2 hour 58 minute run and the last one being a sub 3 hour 30 minute ‘jog’ round Palma in Majorca. In 2008 I chose to carry on running hard through sore throats, coughs and colds on top of a rather stressful time in my personal life. While out running my normal hilly five miler, at around seven minutes per mile I suddenly felt drained, as though all the energy had been sucked from me. I ‘of course’ carried on (we hardy runners don’t know when to stop), but felt terrible at home. That day I went to my GP who tested me and diagnosed atrial fibrillation, and so my journey with this devil began.

“…such a simple condition became debilitating both mentally and physically…” Between 2009 and 2013 I had many episodes of AF, some brought on by exercise, some by combinations of exercise, stress, or a bit of alcohol. The initial treatment was three separate cardioversions and medication, with the associated warfarin INR checks pre-cardioversion. These had limited success and the AF always returned eventually with the same feeling of having all the energy being sucked from me. My home, work, social and exercise life became more affected, such a

In 2014 I was re-assigned to a consultant cardiologist at Aberdeen Royal Infirmary. A catheter ablation had been in the back of my mind but was the absolute last resort to me...someone working on one of my vital organs scared me. However having discussed the risks and benefits with my consultant it became clear to me that a successful ablation could take me back to the quality of life enjoyed pre-AF. So in November 2014 I was wheeled into the catheter laboratory for my procedure. I counted the consultant and 13 other great NHS staff in the laboratory who worked for an unexpected five and a half hours to ablate my AF. 156 ablations later, I was wheeled out. Later that day I was discharged home. Since then recovery has been steady, with an odd irregular heartbeat over the first six months having me on edge. Things have settled on the heart front and in February 2015 I started exercising gradually by walking, then running. In August 2015 I was given the all clear and to my delight made medication free. Since then I have upped the running and in November I completed my second Aberdeen five kilometre beach run in a time of 24 minutes 18 seconds. A far cry from a marathon but the joy of feeling healthy and running and living AF free is nearly indescribable. So, in summary, three things: * We runners need to listen to our bodies, don’t over train when under the weather; * Our NHS is a wonderful gift with hugely talented and caring people looking to deliver great results in this area; * Don’t let the devil that is AF defeat you in your desire for full health, there are treatments out there that could work for you. David, Scotland (2016)

Go online: www.afa.org.uk • info@afa.org.uk

John’s story - The vagal connection At the age of 65 in January 2010, I was admitted to my local A&E where I was diagnosed with paroxysmal atrial fibrillation. AF came out of the blue, however I can see that I had several years of warnings despite being pretty fit all my life, with little or no previous medical problems.

ollowing initial work by the A&E team I was kept in hospital for 6 days, undergoing a range of tests. As a result I was placed on warfarin and bisoprolol which were in addition to medication I was already on, namely ramipril and simvastatin. In effect, within 9 hours or so of onset I had been diagnosed, and treatment started for AF. It took me around two weeks to get my international normalised ratio (INR) into the INR target range, finally in early February, I attended my local hospital and was prepared for a cardioversion. However, after a number of tests were undertaken I was pronounced to be back in normal sinus rhythm (NSR) and discharged. No cardioversion procedure was undertaken as my heart had returned to NSR of its own accord.

“In retrospect, for over two and half years prior I had experienced daily massive palpitations, mostly in the morning.” In retrospect, for over two and half years prior I had experienced daily massive palpitations, mostly in the morning. The palpitations took the form of a massive mule kick to the left side of the chest. Then in micro- seconds I experienced a feeling of incredible warmth that would rush all over my head and would leave me with a surreal feeling, a not of this world feeling. Then it would be all over. At no time did I experience any loss of or changes to vision, no headache, no hot or cold sensations, no dizziness, no feeling faint as if I were going to pass out, no sweatiness or claminess, absolutely nothing to suggest anything untoward. There were just no after effects at all. Fast forward; once settled into my new life of AF I eventually returned to work. Then some 4 months later, I began to identify the onset of an AF event with food that I’d eaten. By this time I’d developed symptoms of diahorrea, burping, intestinal gurgling

and massive, massive bloating which exerted both pain and pressure on the left side of my chest. My GP organised basic blood tests for IBS and Coeliac Disease, which came back normal. He wanted to carry out more tests but I declined. I consulted a Nutritionist who confirmed a link via the vagal nerve between AF and digestive disorders. She prescribed me a course of Probiotics to settle my gut flora, suggested I go Gluten Free and Wheat Free, and also suggested I look at the FODMAPS diet.

“I consulted a Nutritionist who confirmed a link via the vagus nerve between AF and digestive disorders.” Within 6 months of starting this ‘Vagus Nerve Diet’, my health had significantly improved and AF events lessened to the point that now, 6 years down the track, my last recorded AF event was in April 2015; a short, sharp lone event. In addition to my ‘Vagus Nerve Diet’ I have now gone ‘added sugar free’. I have also dieted to reduce my weight, which has helped reduce my blood pressure from a pre AF reading of 136/80 to 125/70, while my heart rate has dropped from an average of 88 bpm to 65 bpm. I self test with my Coaguchek device for my INR blood tests and I am well supported by my GP surgery and I have had no other medical intervention for AF. I have no problems with warfarin which has not been affected by any self imposed diet. John, Cornwall (2016)

Helpline: 01789 867502

Fundraising AF Association 2016 Raffle

For your chance to win one of our fantastic prizes, please fill in your details on the ticket stub and return to us by 1 June 2016. Each ticket is only £1 and will help us to provide information and support to all those affected by AF. This year you could win: 1st Prize: 2nd Prize: 3rd Prize:

A one night dinner, bed and breakfast stay for two at any Hand Picked Hotel Kardia mobile ECG monitor WatchBP home blood pressure monitor

Fundraising champions We’re so proud of Dave Pavey for taking on the Cheltenham Half Marathon with his son Jon. They decided to don the wigs and dress as Fred Flintstone and Barney Rubble - aka The Pavingstones. Dave has had several heart procedures for AF including an ablation in 2012. Dave is now fully recovered and ran to support those with AF, and we’re truly grateful - thank you for fundraising for us.

Dave and Jon Pavey at the Cheltenham Half Marathon

AF Association is delighted that Simon will be running the 2016 Virgin Money London Marathon. Simon chose to fundraise in aid of AF Association after a family member was recently diagnosed with AF. To help Simon reach his fundraising target, please click here.

Ella shaved her hair off for the AF Association raising a fantastic £1775. What a huge committment to raising money for the charity close to her heart! Ella before

After Ella’s fundraising shave

New AF Association Home Collection Box As the old saying goes, every little helps; and we need your help! We’re asking all our fantastic supporters to save up any change you can spare to donate to the charity close to your heart. By donating your change, we can make a real difference to others affected by AF. Please order your collection box via our website or by calling: +44 (0) 1789 867 502. All we ask is that you donate just £2 towards postage and packaging, and save up any change you can spare, and when it’s full please donate to AF Association.

Go online: www.afa.org.uk • info@afa.org.uk

Dental treatment tips for AF patients

If you have an upcoming dental appointment, have AF and are taking anticoagulants, here are a few tips to consider. •

Some patients prefer to ask for a non-adrenalin local anaesthetic, as some people find it exacerbates their AF.

•

The majority of dentists are now content to continue anticoagulation for minor procedures including multiple tooth extractions.

•

If you are concerned about the risk of excessive bleeding you can ask for your procedure to be carried out in a dental hospital or hospital-based maxillofacial surgery department.

•

If you have any concerns regarding dental treatment affecting your AF or the risk of bleeding after a procedure, do not hesitate to discuss this with your dentist. They will be able to advise you of their local guidelines and put your mind at rest.

Patient Support Groups The aims of patient support groups are to empower patients, improve knowledge, support and promote management of their own health. Patients are encouraged to share their experiences of living with a long term condition. The meetings are supported by healthcare professionals, who will encourage a wide range of speakers to attend the meetings. Some of the support groups also have social events throughout the year as well as having medical presentations. Full details of our patient support groups can be found on our website.

Can’t see a group in your area? We are always looking for enthusiastic patients to start their own support group. Starting a support group in your area will create an opportunity for patients and their loved ones to discuss their fears or anxieties with others in similar circumstances. AF Association can offer help and support in setting up a support group. For more information please email Julie Fear or call +44 (0) 1789 867 533.

Helpline: 01789 867502

AF Association Patients Day Sunday 9 October 2016 The ICC, Birmingham UK

Chair:

Dr Kim Rajappan

10:00

Welcome and introduction

www.heartrhythmcongress.org

Session 1 - Prevent - How dangerous is AF? “I thought the whole day was excellent. Very informative and well put accross by 10:05 AF-related stroke risk and the impact of treatments Questions and answers regarding AF-related stroke risk and prevention 10:35 The risks of AF itself

all the speakers.”

10:25

11:15

Dr Vivienne Ezzat

Break

Session 2 - Treat - Can AF be cured? 11:30

What are the treatment options?