A short summary of the ICDC Surrey Education Day

Dr Beeton Consultant Cardiologist Ashford St Peters Hospital as Patron welcomed everyone to the study day. The afternoon started with a buffet and refreshments which enabled everyone to network and share experiences. About 50 participants attended –including patients, family and friends and clinicians from across Surrey.

Dr Beeton introduced Dr Michael Papadakis who is Clinical Lecturer Cardiology at St Georges Hospital and a member of the charity C-R-Y. He discussed ICDs in the young –indicators and challenges. He stated that 600 young people in UK less than 35yrs die each year from sudden cardiac death i.e.12 young people a week and that there is a need for a routine system of NHS heart screenings for young people.

Sudden Cardiac Death is an umbrella term used for the many different causes of cardiac arrest. CRY - Cardiac Risk in the Young provides medical information on the most common causes of unexpected sudden cardiac death in the young (under 35).

Conditions include thickening or abnormal structure of the heart muscle and irregularities of the electrical impulses that upset the natural rhythm of the heart. In young people ICDs are more commonly recommended for people with problems with the heart muscle (cardiomyopathies) or electrics (ion channelopathies).

Dr Papadakis is committed to a multidisciplinary team approach – including genetic specialists, genetic counselling, clinicians (consultants and nurses).

The key focus is on Inherited Cardiac Diseases-structural abnormalities and electrical faults of the heart.

The Team examines risk factors of all the family members’ even if have no symptoms
Investigations establish low to high risk and consider individual therapies.

He then discussed prevention of cardiac death – interventions included screen young individuals e.g. athletes, screen family if risk identified and effective resuscitation.

He outlined the value of a charity offering help, support and counselling to affected families C-R-Y (Cardiac Risk in the Young). It raises awareness of the symptoms of cardiac abnormalities and conditions, which can lead to sudden cardiac death. He said a lot can be done to help young people who have been diagnosed as having a cardiac abnormality. CRY is also supporting medical research into sudden cardiac death and sudden death syndrome and offers counselling and support to families affected by sudden cardiac death. CRY brings ECG Testing and Cardiac Screening events to the general public to detect cardiac abnormalities - this can be through a GP or Hospital.

Screening in UK - known as the CRY experience - costs approx £35 per screen. Overall objective is to get the family together to investigate and screen namely for heart muscle disease and electrical faults. He emphasised the importance of preventing sudden cardiac death – improve quality of life through screening and cardiac evaluation.

Dr Beeton thanked Dr Papadakis for very informative session further information on C-R-Y on website. http://www.c-r-y.org.uk

Exercise with an ICD Paula Simmonds Personal Trainer – Paula gave a personal account of having an ICD; she found there had been a lack of information and often conflicting advice. Rehabilitation was poor and led to lack of confidence to return to exercise. She found very little research on young people and exercise after ICD implantation. She therefore developed a programme of exercise classes for younger ICD patients, which included aerobic circuits, choreography and talks. Sessions comprised of 68 patients for 8-10weeks starting about 4 weeks post ICD. Exercise is started gradually -initially using light weights, avoided high intensity-and emphasised warm ups and cool down periods. Heart rate monitors and home monitors used. She felt a positive approach is needed with young people and the right environment, making it fun and friendly. Paula invited members to C-R-Y London Bridge walk in June 2015.

Basic Life Support Resuscitation A.Ryan and H. Redman
Presentation started with shocking statistics in that survival from cardiac arrest:
- In UK national average is 11-16%
- In Seattle, US the average is 56%

Difference is the priority on compulsory education in schools and Automated External Defibrillator (AEDs) and training widely available in public places.

They emphasised the importance of early recognition and the need to call for help to prevent cardiac arrest, and how to do CPR. Post resuscitation care is important to restore quality of life.

Aideen and Honey outlined Basic Life Support and included information on agonal breathing (gasping respiration) and demonstrated compressions and rescue breathing (which is optional).

They discussed the importance of AEDs in public places with trained staff and said that clear instructions are included. Find out in your local area where the nearest AED is and attend CPR training sessions.

ICD patients having a cardiac arrest need the same resuscitation procedure as others.

 During a coffee break participants were given further demonstrations and opportunity to    practice CPR on resuscitation dummies.

Sister Pat Little, Arrhythmia Nurse, Ashford and St Peter’s Hospital discussed what an Arrhythmia Nurse does. There are 2 Arrhythmia nurses at St Peters and other Hospitals in Surrey have also made these appointments. When patients are admitted they do an assessment and work closely with Coronary care nurses and consultants. They discuss care of ICDs after insertion and give patients contact details.

Referrals can be from patient, GP, Consultant, cardiac nurse or physiologists.
Pat runs two clinics – pre assessment and for arrhythmia.
Pat encouraged patients to contact them after discharge as they can offer advice and support.

Dr Beeton welcomed back Ian Clement who was a Physiologist at St Peters Hospital but now works as Product Specialist,  Biotronik.
He also thanked Biotronik for sponsoring the Refreshments and the current ICD Patient Pack. Ian discussed MRI safety. He said the highest usage of MRIs was in 55-80yr olds. New European (ESC) guidance in 2013 states the need for approved devices and approved leads for MRI. Potential risk is lead tip heating.

Now it is safer to use MRI, although the device must be in for over 6 wks after insertion.
The device needs to be programmed in MRI by physiologist.
All devices need to meet MRI conditional safety standards, and have the device and leads checked first. New technologies may enable scanning of all ICD patients.

Dr Beeton led the Q and A session
On exercisesaid leads do not move after 6 weeks as heart tissue scars around it. Initially walk and do sports gradually. Do not take part in contact sports, but can do household/general light tasks.

Some patients requested copy of presentations to be put on Surrey ICDC blogsite. Please email ICDC Surrey if you would like a copy of the presentations.

Mr. Graham Skelding, ICDC Surrey Annual Review/AGM
Graham is Chairman of Surrey ICDC. He and his wife Margaret were original members of the group which was set up 8yrs ago. ICDC is a support group for patients and their families, to receive information, guidance and share experiences, support and advice is given by clinicians and work together as a team. Graham was pleased to announce the launch of the Patient Pack, which was written in partnership with clinicians and is full of useful information and advice for patients and families on living with an ICD. He has been working closely and developing links with the 5 Hospitals in Surrey (St. Peters, Royal Surrey, Frimley Park, Epsom, and East Surrey). They have all been contacted and encouraged to be part of Surrey wide ICDC. Contact has been made with British Heart Foundation who will offer small grants to Hospitals to help set up their local support groups.
A key priority is to develop channels of communication this year. This will be through email and the blogsite, as well as social media networking using our Twitter and Facebook pages, and in the ICD/Pacing clinic. 

There is a plan to develop a website but we need more volunteers. If anyone can help or recommend someone, please contact us.

Graham thanked committee members for support and help including Duncan as Treasurer and Margaret for organising the catering.

After further networking the event finished at about 4pm.

Contributed by Judi Linney

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