A Royal Appointment

Well done to Sandra, Mike & Lynne for helping to raise awareness of GwentDefibbers Support Group  (Photos to follow).

They were invited to a celebration of Gwent Voluntary Associations (GAVO) at Botany Bay, Tintern. His Royal Highness Prince Charles and Her Royal Highness the Duchess of Cornwall were in attendance.

The BBC wrote https://www.bbc.com/news/uk-wales-44679357

invite

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We’re VERY proud of them all and as soon as photos are available I’ll update the site

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Share Your Views – Invite from BHF

Hello Mike,

Hope you’re well.

BHF is looking to do some work around better understanding the views and needs of people affected by heart and circulatory conditions, such as yourself, and we would really appreciate your help.

As well as doing our own consultations with patients and carers later in the year, we’ve asked Picker (a leading organisation in patient centred care) to do some research from an outside perspective.

As part of this they are looking to do phone interviews with patients and carers who have Heart Failure to share their views on the services provided by the NHS and the British Heart Foundation.

Am I right in thinking you have Heart Failure? If so, would you be interested in taking part?

It will be a chance for you to discuss the challenges you and others with the condition face, what you would most want to change about your healthcare, what support you would want from BHF and much more.

You can find out more information on their website (http://ow.ly/oCOf30kxNOr) and Picker will provide you with £30 shopping vouchers as a thank you for your time.

If you’re interested in taking part, or have any questions at all, please get in touch directly with Susanne Käsbauer or Alan Poots at Picker on 01865 208100 or email take_part@pickereurope.ac.uk

I do apologise for the very short notice but do hope you will be able to take part. If you do get involved, do let me know how you found the session.

Best wishes,

Sinduja

What if…………?

What if my ICD gives me a shock?

Cardiff & Vale University Board Patients

First ever shock – contact electrocardiogram (ECG) department on 02920 743325 between 9am – 5pm Monday to Friday.

One or two shocks – inform ECG Department, but a visit to them may not be necessary.

Cwm Taf University Health Board Patients

All patients who have their cardiac device care at Royal Glamorgan Hospital should inform their Arrhythmia Nurse or Cardiac Device Clinic after experiencing any shock therapy.

Arrythmia Nurse – Dawn Watkins – 01443 443443 ext 6486 or Cardiac Device Clinic – 01443 443226

Multiple shocks or more than two shocks in quick succession – you will need to be admitted to hospital to check your heart rhythm and your ICD. You will need to call 999.

If the ambulance crew record an ECG make sure someone asks for a copy of the ECG reading.

Remember – after a shock, find a place to sit or lie down and try to keep calm. If possible, have someone stay with you throughout the event. These are guidelines only. If you feel unwell after a shock then you must seek medical advice. If at any time you need someone to talk to, then please contact one of our committee members who are more than happy to talk to you about life with an ICD.

 

Thank You Professor George.

GwentDefibbers would like to thank Professor Chris George for attending our support group meeting.

Professor George specialises in genetic research and looking at how our genes affect cardiac arrhythmias. His talk was very informative and interesting and offered the group a marvellous insight into the cardiac research that is taking place ‘behind the scenes’.

Pictured here from L – R Sandra, Chris George, and Mike

cGeorge

More information regarding the research that is undertaken by Chris George and his team can be found here http://www.swansea.ac.uk/press-office/latest-news/ground-breakingbhfcymruresearchatmedicalschoolimpressescabinetsecretaryforhealth.php 

and here http://www.swansea.ac.uk/staff/medicine/research/georgechristopher/

Cardiomyopathy UK – 2018

From: Cardiomyopathy UK <contact@cardiomyopathy.org>
Date: Wednesday, 16 May 2018
Subject: May 2018 Services Update
To: Michael <mike.morgan0@gmail.com>

car
All about devices – ICD

Hot off the presses, we have just published a new book about implantable defibrillator devices

https://www.cardiomyopathy.org/booklets/download-our-booklets

Our new booklet on ICDs is now available to download or order. The booklet includes detailed information to help you learn more about implantable devices, including;

  • different types of devices
  • how they are implanted
  • the emotional impact
  • deciding whether to have an ICD or not
  • personal stories from people living with an ICD

NATIONAL CONFERENCE

conf

To find more details about the conference please visit here https://www.cardiomyopathy.org/national-conference-2018/national-conference-2018

HELP NEEDED

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BHF Conference, Cardiff, 2018

Members of GwentDefibbers recently attended a one day conference in Cardiff which was run by the British Heart Foundation (BHF).

An informative, enjoyable day was had by all.

Pictured here from L – R – Sylvia Jones (Chairwoman BHF Gwent branch),  Simon Gillespie (Chief Executive BHF), Mike Morgan (Chairman GwentDefibbers) and Paul Jones (Gwent branch BHF)

simn gillespie

Great to see Simon wearing the GwentDefibbers lapel badge

Thank You – Ebbw Vale & Tredegar Crime Prevention Panel

I heard recently of a local Crime Prevention Panel initiative called the Home Safe Hospital Scheme and I’d urge people to take advantage of this excellent idea.

It is intended for those who are in and out of hospital and worry about their homes being left unattended.

I made inquiries and was visited by two members of the panel, pictured here from left to right, Keith Davies, and Alan Williams.

keith&amp;Alan

They assessed the property and assured me that they could offer assistance by way of a CCTV camera and also if required, a phone link which was PIR activated and would alert family and friends if there was any activity during the time your home was empty.

I opted for CCTV and this was fixed up for me today.

 

As you can imagine this will offer a lot of reassurances.

A BIG thank you to Keith, Alan, and Martin for fixing this camera today and for the professional manner in which they carried out the work.

You can contact the panel via email at alanwilliams1940 at gmail dot com or  georginah555 at gmail dot com

You can also follow them on Twitter @EVTredCPP and they also have a Facebook page entitled Ebbw Vale & Tredegar Crime Prevention Panel.

Remember,

*Panel members will always phone first to make an appointment with you

* will carry photo ID

This is a local initiative and for those outside this area it might be well worth contacting your local Crime Prevention Panel to see what they can offer you

 

Thank You – Rotary Club of Cardiff – City of Llandaf

Thank you to the Rotary Club of Cardiff – City of Llandaf for inviting Mike (GwentDefibbers Chairman) to a recent meeting.

The meeting allowed Mike to raise the profile of our support group.  It also gave Rotary Club members an opportunity to participate in a Q & A session regarding ICD devices.

Mike thoroughly enjoyed the time that he spent with you all.

We would also like to thank the Club for the donation that they gave to our group.

To find out more about the Rotary club please visit their website at http://www.rotary-ribi.org/clubs/homepage.php?ClubID=933#clubInfo

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 https://www.nhs.uk/conditions/obstructive-sleep-apnoea/

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

IMG

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 http://www.wales.nhs.uk/sitesplus/documents/866/ANEURIN%20BEVAN%20SLEEP%20CENTRE%20-%20PROFILE.pdf

Here is a write up from the website when the unit initially opened back in 2015 http://www.wales.nhs.uk/sitesplus/866/news/35604