Support Information





Patient Perspectives

We have published these on the following topics:




Travel insurance

Not all companies will provide insurance for those with an ICD. We are informed that the following may offer travel insurance to heart patients. Do be aware that some may ask for a "telephone interview" or ask for further information from your GP or JRH.:

  • MedicAlert 01603 828207. www.medicalert.org.uk
  • All Clear 08712 084566. www.allcleartravel.co.uk
  • Saga 0800 0964556 (free call). www.saga.co.uk
  • Sun Selection 01582 476026. www.sunselection.co.uk
  • Venturesure 08452 303521. www.venturesure.co.uk
  • Able2travel 01892 833338. www.ch-travelcare.co.uk
  • Age Concern 08456 003348. www.ageconcern.org.uk
  • Freedom Insure 01223 454290. www.freedominsure.co.uk
  • Holiday Extras 0800 171000 (free call). www.holidayextras.co.uk
  • Free Spirit 02392 419080. www.free-spirit.com
  • It's so Easy 08452 224205. www.itssoeasytravelinsurance.com
  • JD Travel Insurance Consultants (Gill Noble) 01689 859102. www.jdtravbelinsurance.co.uk
  • Citybond Suretravel 0208-676 9362. www.candis.co.uk
  • Essential Travel 0207-087 0400. www.essentialtravel.co.uk
  • Flexicover Direct 0800 09394950 (free call). www.flexicover.co.uk
  • Insure and Go 08448 883226. www.insureandgo.com
  • MIA-Medical 01268 782745. www.fastweb.co.uk
  • Medici Travel Insurance 01243 534435
  • Staysure Medical 0800 6800312 (free call). www.staysure.co.uk
  • J&M Insurance Services 01992 566900. www.travelbility.co.uk
  • Travelinsure Genie 08452 577886. www.trabeinsuregenie.com
  • Virgin Travel Insurance 08448 883908. http://uk.virginmoney.com


  • Brunsdon LLP 01452 623623. www.brunsdon.co.uk
  • Global Travel Insurance 01903 203933.
  • Heart Insurance Services 01424 220110, www.heartinsuranceservices.co.uk
  • Higos Insurance Services 01458 270374.
  • Isuremore Travel Insurance. 08700 540162.
  • Manor Insurance 08000 276171. www.travelinsured.co.uk
  • Orbis Insurance Services (speak to Leane or Lauren 01424 220110. www.orbisinsurance.co.uk
  • Rothwell & Towler 08459 080171
  • travelability 08453 381638. www.world-first.co.uk
  • Unique 01603 828426. www.heathlambert.com

Notes: You will have to insert the website addresses shown into your browser - don't double-click here! Pleae be aware that telephone conversations to arrange any insurance can be lengthy. 0800 numbers are free of charge. Numbers starting 0845, 0844, 0870, 0871 can be more expensive than ones dialled using a national call rate. If the latter is available, this is shown above.

This is now a long list and therefore difficult to use (the latest ones are below the gap) .... It would be helpful to get any recommendations from members about insurance companies, where they have had inexpensive and sympathetic treatment: please let me know.



Helpful topics

Our friends in the Gloucestershire ICD Group have published information on the following topics. I see no point in "re-inventing the wheel" and therefore, as they are prepared for us to link with them, I refer you to their website. Use the link in our links section.

  • The function of an ICD
  • Description of the workings of the heart (with diagram)
  • The implantation of the ICD in the chest
  • What happens after the operation (A new lease of life)
  • Driving guidelines and restrictions
  • Action after receiving a shock from the device
  • The effect and avoidance of electromagnetic interference
  • Travel advice to get help with an ICD when abroad
  • ICD clinic visits
  • The changing of an ICD when the battery runs out
  • Relief of a "frozen shoulder"
  • Temporary disablement of an ICD
  • Glossary of terms


British Heart Foundation

The BHF is of course an extraordinarily helpful resource. Do support them with any donation you feel able to give (Credit card hotline is 08706 063399). Their website is in our links section and their main telephone number is 0208-935 0185. Their direct Heart Information Line is 08450 708070.

We are an official heart support group affiliated to the BHF.

They publish an extraordinarily readable series of Heart Information booklets. I bring a small selection of these to every meeting. However you can order them direct in single copies free either from me or from the BHF, if you wish. They are:

  • No 1. Physical activity and your heart
  • No 2. Smoking and your heart
  • No 3. Reducing your blood cholesterol
  • No 4. Blood pressure
  • No 5. Eating for your heart
  • No 6. Angina
  • No 7. Heart attack
  • No 8. Living with heart failure
  • No 9. Tests for heart conditions
  • No 10. Coronary angioplasty
  • No 11. Heart valve disease
  • No 12. Having heart surgery
  • No 13. Heart transplantation
  • No 14. Heart rhythms
  • No 15. Pacemakers
  • No 16. Peripheral arterial disease
  • No 17. Medicines for the heart
  • No 18. The heart - technical terms explained
  • No 19. Implantable cardioverter defibrillators (ICDs)
  • No 20. Caring for someone with a heart problem
  • No 21. Returning to work with a heart condition
  • No 22. Diabetes
  • No 23. Cardiac rehabilitation
  • No 24. Atrial fibrillation
  • No 25. Keep your heart healthy
  • No 26. Primary angioplasty for a heart attack
  • No 27. Quick guide to heart health

The BHF has recently published some new self-use publications and some small A5 booklets on various topics. I have a very few of these at home. I regret that they are too heavy to carry to one of our meetings. I have stocks of the following:
  • 30 Mins a day any way - a fit for life plan
  • Eating well
  • Get active - stay active
  • Guide to food labelling
  • Heart Health - past issues
  • Salt
  • Stop smoking



Arrhythmia Alliance

The A-A is a coalition of individuals, patient groups (like us), charities, medical professionals and supporters from related industries. The aim of the A-A is to get these groups to work together to raise awareness of cardiac rhythm disturbances in the heart and to promote their diagnosis and treatment. This covers a range of conditions where the heart beats too fast, too slowly or behaves irregularly. The use of an ICD is of course only one form of treatment.

Their website is in our links section and their main telephone number is 01789 450787.

We are an affiliated group of the A-A.

A large part of their role is one of coordination and to campaign for improvements but like the BHF they publish a series of individual booklets. I usually carry a sample of these at every meeting of the Group and I have further copies at home.. However you can order them direct either from me or the AA in single copies free, if you wish. A selection of these are:

  • Atrial fibrillation - patient information
  • Atrial fibrillation - blood thinning in
  • Atrial - fibrillation - cardioversion of
  • Atrial fibrillation - drug information
  • Atrial flutter - patient information
  • Cardiac arrest - what can I do about it?
  • Catheter ablation
  • Catheter ablation - complications of
  • CRT/Pacemaker information
  • ICD patient information
  • ICD/CRT patient information
  • Drug treatment of arrhythmias
  • Electrophysiology studies
  • Genetic testing for inherited heart conditions
  • The Heart, The Pulse and the ECG
  • Long QT syndrome
  • Physical activity advice for ICD patients
  • Remote monitoring
  • Tilt test


  • National Service Framework
  • Frequently asked questions
  • The A-A The heart rhythm charity
  • Arrhythmia checklist
  • Atrial fibrillation checklist
  • Blackouts checklist
  • Travel insurance providers for people with medical conditions




Heart Matters magazine

This readable magazine is published four times a year. It includes updates on treatment, medicines and research and it looks at issues related to the problem of living with a heart condition, such as healthy eating and physical activity. To subscribe to this free magazine telephone 01604 640016.



Heartstart UK

The BHF runs a free two-hour course in emergency life-support skills to teach you to:
  • recognise the warning signs of a heart attack
  • help someone who is choking or bleeding
  • deal with someone who is unconscious
  • know what to do, if someone collapses
  • perform CPR, if necessary




MedicAlert

This organisation provides a member (subscription £25 per year) a bracelet or necklace (at a capital one-off cost), which carries the internationally recognised symbol that denotes that the person wearing it might need help. It carries an identication number and a telephone number. Those finding a person unconscious would be able to make contact with Medic Alert after carrying ot any urgent and necessary first aid. All medical and paramedical staff (eg ambulance personnel) should recognise the disc. Their website is in our links section.

My heart stopped at one time. I wear one of these necklaces all the time.





Snippets of news

Heart Rhythm Week. The AA and AFA promote 21-27 May as their heart rhythm week.

Heart Health is an excellent free quarterly magazine from the BHF - Telephone 08708 505281.

The Restart the Heart initiative to provide more public AEDs is still a major fund-raising activity for the AA. They are continuing their Know your pulse campaign. See their website.

Remote Monitoring. As the months proceed the manufacturers are developing more and more sophistication to enable JRH to monitor and interrogate the device using a telephone connection through a home telephone. At the moment an analogue signal is used by the ICD so work has been done to develop new filters to make transmissions compatible with digital technology.

Not all devices are able to be remotely monitored and, if it cannot, it is not possible to convert it. However for those patients that have it, they have the convenience of avoiding hospital visits on a regular basis and also 24/7 ability for any symptom to be checked over the phone. It is an obvious boon to those who are housebound or frail.

The North Gloucestershire ICD Group have a very comprehensive web site. Do consult it, if you wish. See the “Links” page on our own website www.icfoxford.org.uk. I am also privileged to receive Sam’s attractive and very professional newsletter detailing the activities of his ICD group in MK. My snippets of information come from all sorts of sources including his.

Information. I have a complete stock of AA and BHF information at home. I will send single copies to any member of the Group on request. I no longer bring it all to our meetings in Oxford – I cannot get the car near enough and it is rather heavy in bulk! If you are not sure what I might have, just telephone and ask what you want to know about and I will try to help.

Emergencies. Put your home contact telephone number into your mobile address book under "ICE". Paramedics will look for this, if you are unconscious. No good of course, if like me, you keep your phone switched off with a pin number not known! However ICD recipients should always carry documentation describing the characteristics of their device and a list of the drugs that they are taking. A simple way of doing this of course is to wear a MedicAlert bracelet or necklace.

Occasional Papers – Patient Perspective. May I draw your attention to these? Our present twelve of these are held by me as hard copy or you can find them of course on the website.

Alarms. All ICDs have an alarm. It appears that each alarm has its own alarm system to tell you if something is amiss, usually when the battery is running out. If you hear a strange sound, particularly if it happens each time at the same time of the day, consult JRH. I am not talking about a “shock” of course. If you have a shock, always ask for advice and, if you lose consciousness or are in pain, 999 should be called immediately.

Chest pain. Receptionists on the 999 service have a system of priorities to call an ambulance. Chest pain is considered to be the first (out of six) in their list of priorities. Similarly in an A&E department, chest pain is given a high level of urgency. Nowadays if a stent is needed, a patient will not need to wait a few days and it is inserted immediately using balloon angioplasty.

Dental treatment. There are connections between problems with teeth and the heart. Always inform the dentist if you have had heart trouble and of course if you have an ICD. Antibiotics used to be routinely administered before all dental treatment of heart patients but this is now only done #on a case by case basis.

New cholesterol drug. A member of the ICD Group in MK tell us that he is on a long term clinical trial of a two drug combination to improve the HDL/LDL cholesterol ratio. It is combined with the taking of a statin.

Patient stories. The AA website has a fascinating series of stories covering patients having specified arrhythmias. This is worth a look.

Anticoagulation. Most of us take either Warfarin or aspirin. Both, particularly Warfarin, have side effects. An exciting new drug called Pradaxa (or Dabigatran etexilate) has been developed which has a major advantage over Warfarin is that it can be given in a fixed dose and pattern so that patients do not have to have their blood monitored so regularly. It has already been approved for patient use by the European Medicine’s Agency. NICE has approved it as being cost-effective for surgery (about £2.50 a dose) but it still needs to be approved for general use. This should come any time now.

Atrial Fibrillation and Dementia. Researchers at UEA have now found that AF after a stroke more than doubles the risk of dementia but more research is needed to see whether more vigorous use of drugs to control AF would reduce dementia.

Dronedarone is now fully approved as a stand-alone or as an alternative to Amiodarone so, if you are experiencing side-effects or problems with the latter drug,particularly if related to the thyroid glad,do consult your doctor. Perhaps it should be stated that Dronedarone also may produce side effects like ANY drug.

Oestrogen. Researchers have found that the female sex hormone, oestrogen, plays a part in the immune system in the body. It seems to reduce inflammation and they are now trying to see whether there is any connection to explain the recorded CHD rates being lower before the menopause and higher thereafter.

Waist 37” or above? Get working and reduce that paunch to reduce your chances of type 2 diabetes and CHD.



Other internet sources

Please refer to the links section for:
  • Quitting smoking
  • Healthy eating
  • Weightwatchers
  • General health advice (NHS Direct)
  • Heart2Hearts
  • Blood pressure
  • Support for carers
  • Citizens Advice Bureau
  • Disability rights
  • Diabetes




GCS/24.05.12