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 ( 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

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,



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

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:

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,

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

Best wishes,


Sinduja Manohar

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

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 or comment below.

Thank you so much in advance.

Kindest regards


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: 

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


David Lewis  email:-  hazelew13atBtinternetdotcom

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 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 or call 0207 554 0426.

Best wishes,


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

Here is the role description


Here, more information from the BHF

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


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.

Restart A Heart Day

Restart A Heart Day: 18 October 2016

Time: Whenever suits YOU

Where: In your school hall, gym or classroom


Dear Mike,

I learnt CPR in one of my lessons at school. That lesson had a massive impact on my life.

I was sitting next to my dad on the bed, and suddenly he fell to the floor. I didn’t know what to do and my mind was panicking.

Then I remembered what my teacher had taught me and I started doing CPR. I called the ambulance and cradled the phone between my neck and my ear. My arms were aching. I was sweating. But I kept on doing CPR.

Dad is recovering in hospital now, I go to see him every day.

I’ve since found out that the British Heart Foundation is trying to get every school child in the country to learn CPR. And Restart a Heart Day is the biggest training yet.

100,000 people learning CPR skills. Imagine how many lives could be saved as a result.

That lesson has had a massive impact on our family’s life. If not for that lesson I wouldn’t still have my dad.

Thank you for helping train even more people in CPR – it’s so important.


Read more about Sarah’s story here…


Fundraising Walk

Please consider sponsoring the Abergavenny and Pontypool BHF Fundraising Group.

They work tirelessly throughout the year to raise funds for The British Heart Foundation and now ask for YOUR help with the sponsored walk which takes place in July.


Silvia and the group are looking for volunteers, so, if you feel you would like to make a difference please contact her. Her contact details are on the poster.

To view poster more clearly just double click and it should enlarge.

Thank you all in advance