Heart Failure Patient? Please help us…

Please find enclosed a copy of a letter sent to Mike via the BHF

If you would like to get involved with this project then please use contact details in letter. …Thank you

Dear Mike.

We have been approached by an external organisation who is looking for patients with heart failure to get involved with their study.

When you signed up to Heart Voices you stated you had heart failure so I am sending this to you in case you are interested in getting involved.

Get involved in the design and development of a mechanical circulatory support (MCS) device for patients with severe heart failure

A research team at Queen Mary University of London are looking for patients and carers who have been affected by heart failure, and may be potential recipients of the device, to get involved with the research team and help them with the development of their device.

Your input will be used to guide part of the design for the device as they move towards animal and human trials.

The project will begin in November 2017 and will last for two years.

By getting involved you’ll be asked to be part of a focus group where you’ll provide feedback including any ethical concerns you may have and the research team will give your regular updates.

If you are not able to travel to London, you can get involved online through Skype or WebEx at a time that is convenient to members of the group.

They will cover all expenses and will offer a small financial incentive for participation.

If you’re interested in getting involved please contact the research team directly – Amin Rezaienia at a.rezaienia@qmul.ac.uk

Best wishes,

Sinduja

Sinduja Manohar

Patient Engagement Officer
British Heart Foundation
Greater London House | 180 Hampstead Road
London | NW1 7AW
DD: +442075540426

Au Revoir Mandie

December 2016

We said au revoir to ICD Nurse Specialist Mandie Welch at the last support group meeting.

Most of us who have attended the Cardiff Cardiology Dept.at University Hospital of Wales will have met Mandie at one time or another.

She has offered us support to come to terms with living with our ICD’s by giving us the information we’ve needed and reassurances to ourselves and families by the bucketful.

Pictured from L-R Sandra, Mandie Welch, Mike and Lynne

mandie

Mandie now works in the Cardiology Department at Cwm Taf University Health Board.

We wish her all the very best in her new job & would like to say lots of thanks from all of us at GwentDefibbers Support Group.

Thank you

 

Individuals from Wales with Arrhythmia After A Heart Attack

Mike has asked me to share this letter from Rebecca at BHF Cymru.

Hi Mike,

BHF Cymru funded researchers have published a brand new paper where they have discovered that a particular group of cells are found in the scar tissue left behind after a heart attack, that could play a significant role in causing irregular heart rhythm, or ventricular tachycardia.

I will be publicising this paper next week with the Welsh media in line with the start of British Science Week and ideally would love to be able to raise awareness of this condition by featuring the story of someone who has direct experience of arrhythmia after having a heart attack.

If there is any member of your group that would be happy to share their story with me, please do get in touch via email on morganr @bhf.org.uk or comment below.

Thank you so much in advance.

Kindest regards

Rebecca

__
Rebecca Morgan
Communications and Engagement Manager
British Heart Foundation
Sophia House | 28 Cathedral Road
Caerdydd Cardiff | CF11 9LJ
DD: 02920 382406
Mob: 07823 353998

Heart disease can kill when you least expect it
But with research there is hope. Together we can beat heart disease.
Join the fight at: bhf.org.uk/jointhefight 

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Thank you for your interest…. and comments

Can anyone help?

I have copied a letter which was sent to Mike earlier today.

Any help and advice would be appreciated, thank you in advance.

Ablation and Pacing

I obtained your contact details from the AFA website which my cardiology nurse at UHW Cardiff suggested so I could do some research prior to having and Ablate and pace procedure, hopefully this spring!!

I would like to meet or talk to someone who has experienced this procedure for their views and reassurance. 

Do you have anyone in your Gwent Defibbers group who could help me? 

I live in north Cardiff but could easily travel to Newport.
Look forward to hearing from you

regards

David Lewis  email:-  hazelew13atBtinternetdotcom
(02920627878)

Do You Have an Inherited Heart Condition?

I’ve copied a letter which has been forwarded to Mike from Sinduja Manohar of The British Heart Foundation (BHF)…

Dear Mike,

We have an exciting new opportunity for people with an inherited heart condition to help us improve services and provide support. If you have an inherited heart condition we’d very much like you to get involved. If you know anyone who would be interested in this role please do pass this along.

Inherited heart conditions can affect people of any age and it is possible to develop a heart condition due to a faulty gene without presenting any of the symptoms of the condition. Therefore BHF is trying to do more work to ensure these patients are getting the support they need. For example, the Miles Frost Fund will help ensure that genetic testing for immediate family members of those affected by inherited hypertrophic cardiomyopathy is available nationwide. This will mean more people are diagnosed with and treated for the potentially life-threatening condition.

To ensure we are able to represent the wider patient voice in the Miles Frost Fund, as well as other BHF projects related to inherited heart conditions, we are setting up a new patient reference group. The group will be involved in a range of activities including linking up with local sites who have been funded to provide services through the Miles Frost Fund.

If you have an inherited heart condition and would like to get involved have a look at the role description and send a brief summary (max 500 words), to heartvoices@bhf.org.uk by 3 February 2017, stating why you would like to get involved in this project and what you think you can bring to the role.

If you have any questions please email heartvoices@bhf.org.uk or call 0207 554 0426.

Best wishes,

Sinduja

Sinduja Manohar
Patient Engagement Officer
British Heart Foundation
Greater London House | 180 Hampstead Road
London | NW1 7AW
DD: +442075540426

Here is the role description

role-profile-inherited-heart-conditions-reference-group

Here, more information from the BHF

https://www.bhf.org.uk/get-involved/heart-voices/involvement-noticeboard/patient-reference-group-for-inherited-heart-conditions

Closing date is 3rd February 2017

AED Training Session, Ebbw Vale

Recently The Welsh Ambulance Trust offered their services to the parishioners of the Catholic churches in Ebbw Vale, Tredegar and Rhymney.

The Parishioners had decided to raise funds in order to purchase a AED (automatic external defibrillator) and consequently arrangements were made for the Trust to encourage safe use of the AED and teach the parishioners how to use it.

Here a photo from the event

st-johns-defib3

Thank you to The Welsh Ambulance Trust for teaching the session, to Mike (chairman) for arranging it, to Fr Edmund for allowing the use of All Saints Church Hall and last but not least all those who took time out to attend and participate.