Sleep Apnoea – Stop Bang Questionaire

There are many sleep disorders and these include problems like Sleep Apnoea which is a disorder that can greatly impact your life. Here is some information from NHS Choices

A questionnaire has been designed which can help identify people who have this problem.


Quite a few of us will have met Dr Jose Thomas from our support group meetings.  He is the doctor responsible for the Sleep Disorder Service in Gwent and here is the information about the service and staff from the Aneurin Bevan NHS website

Here is a write up from the website when the unit initially opened back in 2015



The ICD & End of Life Care

Our April 2016 meeting involved a discussion with Mandie Welch (ICD Nurse Specialist) regarding end of life issues with people who have ICD implants.

Generally speaking many families shy away from discussions relating to death and dying.

Most of us wish for a peaceful, comfortable, pain free death so for those of us with ICD implants these discussions are particularly important so that adequate preparations are made.

As health conditions deteriorate the chances of the heart rhythm becoming more unstable increases and consequently the risk of shocks increase too.

These can be painful for the patient, cause a lot of anxiety for the patient and family and can be distressing for family and carers to witness.

Mandie explained at the moment issues of hospitals & medical teams not communicating with each other can be problematic and because of this  it is very important to know that WE can act proactively to help minimise the risks and / or prevent inappropriate shocks by acting on the following –

  • Make sure that  ICD’s nurses are informed of changes in patient diagnosis for instance cancer, heart failure etc
  • Inform them when you/ family member has been admitted because of deteriorating condition.
  • Ensure that staff treating you / yours have awareness of  contact numbers of ICD Nurse Specialists
  • Ensure palliative care services have contact details of ICD Nurse Specialists.

Mandie emphasised that

*turning off the device will NOT cause death.

*Will NOT be painful

She explained that the physiologists would be able to visit the ward or individual home in order to deactivate the device.

The Arrhythmia Alliance has issued information regarding ICD’s and deactivation and you can read it here..



The British Heart Foundation (BHF) has issued a frequently asked questions sheet which you can read here

GwentDefibbers would like to thank Mandie for a very interesting but difficult talk which she did most sympathetically…. Thank you



Cardiac Rehab & heart failure

You will probably be encouraged to participate in cardiac rehabilitation.

You will meet members of the health care team that will include the nurse specialists, dietician, physiotherapist and pharmicist.

During this period of time you will be continually assessed regarding your physical and emotional health.

Importantly you will meet others in a similar situation as yourself and realise that you are not alone.

Part of rehabilitation will include advice regarding lifestyle changes including excercises.

For those who have an interest in swimming it is wise to discuss this form of exercise with health care professionals as this may pose particular problems with heart failure patients. Here, a link via the BHF (British Heart Foundation)

Heart Failure

With many thanks to Cheryl and Sarah, (heart failure nurses), for attending our January 2016 meeting. Much appreciated.

What is heart failure?

Heart failure is a condition in which the heart has lost the ability to pump enough blood to the body’s tissues at the right pressure.

The heart will require assistance to help it do its job properly.

What are the symptoms?
They may include –
*Shortness of breath when active and at rest
*Fatigue and general weakness
*Swelling of legs, ankles and / or feet
*Fast heartbeat
*Irregular heartbeat
How is heart failure diagnosed?
*Doctors will obtain a full medical history
*Bloods will be taken for various tests.
*Chest x rays may be taken.
*Echo cardiogram may be performed
All tests will be discussed with you, your doctor and nurses.
What treatment (s) are available?
Treatment may include
*Advice regarding lifestyle changes
Much more information regarding heart failure can be obtained via NHS Choices
Remember, you can always make arrangements to speak with your doctors, nurses and  / or pharmacist for more information.

Heart Failure symptom sorter

Many thanks to Cheryl Palfrey and colleague Sarah, Heart Failure Nurse Specialists for raising awareness of the symptom sorter chart.

It is issued by the Cardiac Rehabilitation and Heart Failure Services, Aneurin Bevan Trust.

sorter (3)

For those who may be known to the Heart Failure team and you have any concerns regarding symptoms please contact the department in Nevill Hall, Abergavenny.



First Aid at your fingertips via iphone app

The British Red Cross have designed a phone app which offers First Aid at your fingertips.


The device is FREE to download on your phone and could potentially save lives.

More information here…

More general information about the work that The British Red Cross is involved with can be found here

ICD and Anxiety.

GwentDefibbers had the opportunity to meet with Professor Paul Bennett at the December group meeting which took place in St Woolos hospital, Newport.

Professor Bennett works with the Department of Psychology at Swansea University and we thank him for coming to chat with our group.

He has a particular interest in individuals who have an Implantable Cardioverter  Defibrillator (ICD) in place and especially with those who suffer anxiety and increased stress because of heart health and implanted cardiac device.

Pictured with Sandra and Mike is Professor Paul Bennett.



To ENLARGE click on image.

The professor explained that his team were trying to identify common causes of anxiety and questions that individuals might ask pre and post ICD implant so that eventually an appropriate information leaflet/booklet could be produced.

It had been noted by many in the group that although the available booklets gave a broad overview of the device the real ‘nitty gritty’ questions that were uppermost in people’s mind were frequently left unanswered. Many people in the group thought that the booklets were too technical.

The meeting was intended as a 2 way process and individuals were encouraged to ask questions. Some questions and answers included…..

Group member 1– described his collapse, admission to hospital, investigations including constant monitoring on the ward, then receiving the ICD implant only to then ‘suddenly’  be released back out in to his normal environment. He described feeling very alone and scared. His partner described how she felt great weight of responsibility for him.

The Professor referred to a study whereby a group participated in treadmill exercise and this was observed by the partner(s). This helped the partner(s) appreciate what the other was actually capable of doing and feedback was positive. This demonstrates the importance of encouraging family / friends to participate in the rehabilitation programme.

Group member 2 –  described suffering horrendous panic attacks. The sensations of panic were similar to the feelings experienced prior to his ICD firing.  He was unable to differentiate between the two and desperately asked for help.

The Professor explained about hyperventilation / over breathing that although it can feel as if you don’t have enough oxygen, the opposite is true. He informed us of a simple exercise which would help counteract hyperventilation which was to Breathe in and out of a paper bag. This would cause you to re-inhale the carbon dioxide that you exhaled thus help to relieve the effects of the panic attack.

Another exercise is a ‘belly breathing exercise’ …

   Place one hand on your chest & the other hand on your stomach.

  1. Sit comfortably, with your knees bent and your shoulders, head and neck relaxed.
  2. Breathe in slowly through your nose so that your stomach moves out against your hand. The hand on your chest should remain as still as possible.
  3. Tighten your stomach muscles, letting them fall inward as you exhale through pursed lips. The hand on your upper chest must remain as still as possible.

Group member 3 – had only had his ICD within the past few weeks and was extremely anxious about what he could/could not do.  He was particularly nervous in case the slightest exertion would cause the device to fire.

Mike explained to him about the ‘trigger rate’  that his device was set at and was only likely to fire if it was in that zone. He was reassured by this chat and this is a reminder that ICD recipients can frequently find reassurance with members who experience the same fears as themselves.

And finally…..

The Professor briefly discussed a mind-body approach to well being which can help to reduce anxiety and stress. The technique is called ‘mindfulness’ and I enclose a link which offers a lot of information at

Professor Bennett explained about various studies that had been undertaken regarding stress and cardiac disease.  He appreciated that many patients found numerous questionnaires tiresome but hopefully all this research would eventually offer very positive results for people like us or those in similar situations.

If anybody would like to know more about the research that is being undertaken or who would like the opportunity to participate in a study then please contact the Professor at –

Professor Paul Bennett, Department of Psychology, College of Human and Health Sciences, Vivian Tower, Swansea University, Swansea SA2 8PP, United Kingdom.

Telephone: (01792) 606830

We welcome comments. Please find ‘leave comment’ tab at bottom of each entry. Thank you.

Sudden Cardiac Arrest

A sudden cardiac arrest is when a person’s heart stops beating without warning. They will collapse and lose consciousness. Many hundreds of people in the UK die from sudden cardiac arrest each year.

This collapse requires immediate treatment in order to get the heart beating again and to reduce the risk of causing permanent damage and / or death.

You must keep calm and

* Dial 999

* Commence CPR

* If an AED (automatated external defibrillator) is available use it.

* The ambulance crew will continue treatment on arrival and then transfer the person to hospital.


First Aid….

It is recommended that everyone is familiar with CPR (cardiopulmonary resuscitation).

CPR can literally save lives.

Anyone can learn these skills and it will be worth finding out from your local doctor’s surgery or St John’s Ambulance  where the nearest classes are.

More information regarding sudden cardiac arrest  can be found on the Arrhythmia Alliance website at

12 young people!!!

Just have to share this…

The video helps raise awareness of cardiac risk in the young and is very informative.

Remember….. any questions ask your GP, ICD nurse specialist or you can contact CRY at

Cardiac Risk in the Young

A charity offering help, support & counselling to affected families.

Head Office:

Unit 1140B,

The Axis Centre,

Cleeve Road,


Surrey KT227RD

Tel:- (01737) 363222

Fax:- (01737) 363444


Registered charity number: 1050845