GwentDefibbers & BHF

bhf

Excellent news. Our support group is affiliated to the BHF for another year.

 

Dear Mr Morgan,

Thank you for completing this year’s re-affiliation form. I am pleased to inform you that your group is now affiliated to the British Heart Foundation (BHF) for another year. Your Certificate of Affiliation will be in the post to you shortly.

Don’t forget, if your group’s details change just let us know and we’ll update our systems. This way you’ll make sure your group doesn’t miss out on any of the exciting opportunities available to Heart Support Groups.

Your group’s public liability insurance will also be valid for another year. You can find out more about your insurance cover in the Safety First booklet. If you don’t already have one, we recommend you order your free copy using the resource code HSGF, from our website at bhf.org.uk/publications or call 0870 600 6566.

The team would also like to take this opportunity to thank you and everyone involved with your group for all of your hard work over the last 12 months. We know the support you provide to heart patients and their families and friends in your local community makes a real difference.

If you’d like to get in touch with the team you can reach us on 0207 554 0091 or you can email heartsupportgroups@bhf.org.uk.

Best wishes,
Sophie
Patient Support and Engagement team administrator


Fight For Every Heartbeat

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Cardiac Surgery Research: Help required.

Please find enclosed a copy of a letter from the British Heart Foundation

If ANYONE interested then please use contact details in the letter. 

Please note that they need a response by the 19th June 2017

 

From: Sinduja Manohar
Sent: Monday, June 12, 2017 5:39 PM
To: mike.morgan0@gmail.com; ‘davies.j20@sky.com’
Subject: Can your group help set priorities for cardiac surgery research?

Dear Mike, Jeff and Sandra,

We’ve been approached by an organisation who are looking to set up a Priority Setting Partnership which is a way to bring patients, carers and clinicians together to identify and prioritise the unanswered questions about treatments that they agree are the most important – this is where they need your help.

In particular they are hoping to set up the Partnership to focus on Cardiac Surgery Research. In order to get funding to achieve this they need to put forward their plans of who will sit on the steering / working group to the funding committee. They see the importance of having patients be part of the steering / working group to ensure patient needs are at the heart of what they do and are hopeful that you will want to get involved.

I am emailing to ask if this is something one of you or someone in your group would be interested in getting involved in. Given your wider patient links with the Heart Support Group we believe that you’d be able to talk to a range of patients who have had cardiac surgery to find out their viewpoints. If you do get involved and funding is provided, it is anticipated there will be three face to face meetings and six teleconferences over 2 years.

Please note that at the moment this is only putting forward your expression of interest in getting involved with this partnership as funding has not yet been secured and this is not a BHF opportunity – we are promoting it on behalf of another organisation.

I hope this is something you are able to get involved in. I do realise this is all a bit vague so if you do have any questions or would like to discuss anything further please do not hesitate to get in touch.

Best wishes,
Sinduja

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

A Garden Party – Buckingham Palace

Huge congratulations to Mike for getting an invite to the Queen’s Garden Party.

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From the Royal Family website… https://www.royal.uk/garden-parties

Over the course of each year, The Queen welcomes over 30,000 guests to spend a relaxed summer afternoon in the beautiful gardens of Buckingham Palace …..

At each Garden Party, around 27,000 cups of tea, 20,000 sandwiches and 20,000 slices of cake are consumed!

Garden Parties are an important way for The Queen to speak to a broad range of people from all walks of life, all of whom have made a positive impact in their community.

We wish Mike and Lynne best wishes and hope they enjoy the event and will update blog with photo’s once available.

Sunday 25/05/2017

I’ve posted 2 photos from the Garden Party which was attended by Mike and Lynne.

They tell me the day was fantastic and a great experience.

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Mike & Lynne on the red carpet!

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Her Majesty The Queen

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The Queen looks so tiny.

Congratulations both and very glad the day went well.

Loyal Order of Moose, Tredegar

Many thanks to the people associated with the Loyal Order of Moose, Tredegar for their Grant donated to GwentDefibbers Support Group.

Mike was invited to give a talk about the support group and to raise awareness of ICD’s.

Picured here – Jean Gardner & Mike

jean-mike

The Grant will be used to purchase a projector for the support group.  At present a projector has to be borrowed for each meeting in order for the speakers to convey their messages easier.

Many thanks to Jean Gardner, Ladies section of The Loyal Order of The Moose, Tredegar for inviting Mike and for the Grant.

Would You Like To Participate in a D.V.L.A Panel?

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

If you would like to participate in the project please use contact details in letter…..Thank you

Dear Mike

The Driver and Vehicle Licensing Agency (DVLA) are currently setting up an online panel to enable them to consult the general public on any future changes to their services or products and would like to hear your voice.

The DVLA is responsible for managing the collection of data, holding over 45 million driver records and over 40 million vehicle records, together with the collection and enforcement of Vehicle Tax.

This information helps them improve road safety, reduce vehicle related crime, support environmental initiatives and limit vehicle tax evasion.

DVLA work closely with stakeholders, customers and other interested parties to ensure they are providing products and services that suit their needs. 

DVLA is now looking for volunteers to join its online research panel to gain customer insight on driver and vehicle related products and services. 

In particular, they would like to hear from people with heart conditions, to ensure that they develop and design appropriate medical services and literature.  

Being a DVLA panel member is a great opportunity to give your views and opinions on our current and future services. 

This is your chance to have your say! If you are interested in becoming a panel member, or want further information please contact the DVLA on the following email address: 

marketresearch.panel.5@dvla.gsi.gov.uk

Please note this is not a BHF endorsed project, we are signposting this to you as it may be of interest. However please do let us know if you do get involved as we would like to hear your feedback on your experience of working with the DVLA

Kind Regards,

Sophie
British Heart Foundation
A Company Limited by Guarantee
Registered in England and Wales
Registered Office:
Greater London House
180 Hampstead Road
London NW1 7AW
Company Registration Number 699547
British Heart Foundation is a registered charity in England and Wales (225971) and in Scotland (SC039426)

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

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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