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Patient meetings


Arrhythmia Alliance and our member organisations hold meetings each year specifically for patients. The focus is education, providing opportunities for patients to learn from each other, and from medical professionals.

The single biggest patient event each year is Patients Day of the annual Heart Rhythm Congress.


Patients Day 2013 took place at The ICC, Broad Street, Birmingham on Sunday 20 October 2013. You can view the agenda for the day, or alternatively learn more below.


Patients Day 2013 - Know the difference, make a difference: sudden cardiac arrest explained


Our 2013 meeting borrowed from our Hearts & Goals campaign with Fabrice Muamba to tackle the UK's biggest killer: sudden cardiac arrest. The afternoon session was devoted to a sudden cardiac arrest survival story and CPR and AED awareness session with West Midlands Ambulance Service.




Patients Day 2012 - The Patient Journey: Symptoms, Diagnosis and Life After



Thank you to all who attended our third annual Patients Day on Sunday 23 September 2012 at The Birmingham ICC. With over thirty attendees it was our largest yet.


Patients Day 2011


“Superbly paced and lively, keeping me engaged throughout” - feedback from Patients Day 2011


We are delighted that so many of you were able to join us at this important educational event. For those that attended we hope you enjoyed the presentations and opportunity to meet and chat with other patients and carers.

“Superbly paced and lively, keeping me engaged throughout”
“Up to date information”     “New ideas and views”     “Good variety of topics”
“Sharing experiences”

More than 20 patients and carers attended the first Arrhythmia Alliance National Patients Day this year.

The day was a huge success with presentations given by some of the UK’s leading arrhythmia experts on a range subjects covering everything from travelling with an arrhythmia to placing lifesaving equipment in the community.

Sam Shunmoogum from Milton Keynes ICD Support Group gave a very informative talk on how his Patient Support Group has grown and what he believes his success is based on. It well-known that patients benefit from talking to each other about their condition and find comfort in the fact that they are not alone.

Trudie Lobban, MBE, Founder and Trustee of A-A, outlined the ways in which the charity can support the groups both established and aspiring. For more information on how A-A can help you and your group, please contact caroline@heartrhythmcharity.org.uk.

The morning session broke for lunch following Jean Maloney, Arrhythmia Nurse Specialist’s talk on ‘Getting the most from your Arrhythmia Nurse’. Of all the presentations given, this was one of the most useful, offering advice for patients to use before their appointment, ensuring that they ask the questions that are most important to them.

Lunchtime gave the opportunity to share ideas and experiences alongside speaking to the experts in a relaxed and informal environment.

The afternoon session went very quickly, with subjects such as ‘Living with your Device’ and ‘Exercising with an Arrhythmia’. Both sessions providing invaluable advice and prompted a lively question and answer session.

The day came to a close with another opportunity for members to meet and chat; email addresses and telephone numbers were swapped, ideas for future meetings and publications were evolved and a sense of achievement was widely felt.

The first National Patient Group meeting was over, however the work of A-A to support the Patient Groups is only just beginning so that the ideas from the day are taken forward into 2012.

If you would like any further information of how you could become involved in a Patient Support Group or where your nearest group is, please contact caroline@heartrhythmcharity.org.uk.

Click below for copies of the presentations from the meetings:

Sam Shunmoogum - How a Patient Group Works for you   View
Trudie Lobban MBE - What A-A Can Do for You   View
Jean Maloney - Getting The Most From Your Arrhythmia Nurse   View
Wendy Adams - Your Guide to Successful Fundraising    View
Joe Eden -  Defibrillators in the Community   View
Andreas Wolff - Exercising with an Arrhythmia   View
Sue Jones - Do's and Don'ts of Travelling   View
Jenny Tagney - Living with Devices   View

NICOR (The National Institute for Cardiovascular Outcomes Research) Patient Day 2014

8 May 2014 - 3rd Floor, 170 Tottenham Court Road, W1T 7HA


NICOR (The National Institute for Cardiovascular Outcomes Research) collects anonymised patient information from across UK hospitals to try and improve the quality of care and outcomes for patients that have heart problems and treatments. These include adult heart surgery, heart attack, heart procedures, heart devices (for example pacemakers), heart failure and congenital heart surgery.
NICOR publishes reports every year from each of these areas and wants to ensure that it is providing information to patients in a meaningful and accessible way that is useful to them and their families. The NICOR team wants your help to improve the information it provides for patients and the public and this is the reason they want you to join them at their Patient and Public Open Day on the 8th of May.
The Open Day will allow you to find out what NICOR do and how you can get involved in their work. The Patient and Public Open Day will be a great opportunity to meet the NICOR team and for us to hear your views and experiences. The NICOR team wants patients and carers, relatives and friends of those with heart problems, to join them and they don’t expect you to have a deep understanding of the clinical detail, just a keen desire to improve heart care and reporting.


If you would like to Register your Interest for this event or find out more, please contact Carol Porteous, NICOR Patient and Public Engagement Co-ordinator via e-mail: c.porteous@ucl.ac.uk or call: 0203 108 3895


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Know Your Pulse Awareness Event 

17 May 2014 - The White Rose Centre, Leeds 

Please get in contact for further information 


DECIDE Conference

2 - 4 June 2014 - Royal College of Physicians, Edinburgh


“Come and join the members of the DECIDE project group and an invited audience of international specialists in evidence-based guideline development as they seek to develop strategies to get evidence-based recommendations implemented in clinical practice. The conference will discuss issues around communicating evidence to clinicians, patients and carers, among others.”


To find out more or to register for the conference please fo to the DECIDE website http://www.decide-collaboration.eu/

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