Tell us how we can improve support for people living with heart and circulatory conditions

[Helen_BHF]

Hi everyone,

Firstly, I hope you're all having a good week (even if it is only Tuesday!)

I think many of you will be interested to hear that The BHF is hoping to better understand the needs, views and experiences of people affected by heart and circulatory disease - I’d like to ask for your help with this.

We want to know about the challenges you face if you’re living with heart or circulatory disease, or living with their risk factors (such as high blood pressure or cholesterol levels, diabetes, having a family history of heart disease) Whether you’re affected personally, or care for someone who is affected, we’d also like to get your thoughts on how we can improve the support available from existing BHF and NHS resources.

The questionnaire is completely anonymous and shouldn’t take more than 20 minutes. I really appreciate any time you can give to help us improve our work.

Any comments on this post won’t be included so please do make sure you complete the survey here: www1.pickersurveys.org/snap...

If you start the questionnaire and then change your mind, you can stop at any time.

Thanks all

[Milkfairy Heart Star]

All done.

How will the BHF publish the findings and how do the BHF plan to respond to what we all say?

[Helen_BHF in reply to Milkfairy]

Hi Milkfairy - thanks so much for completing the survey. We haven't got any plans to publish findings at the moment but what we will be doing is using we what we learn to build a new strategy focused on delivering the best possible support for people affected by CVD.

[kel55]

completed.

my codition is not on the list at the end and no where to put it/ amend to include it. I have Primary Microvascular Disease with Coronary artery spasms, raynauds, I have had two heart attacks multiple Acute coronary syndromes, vasovagal syncope plus other asociated conditions can you please explain why it is regularly overlooked and considered bengine by The BHF. as a consequance organisations such as Capita consider My condition as the same level as arthritis and therefore PIP is refused on these grounds. I am also told that other fringe heart/vascular conditions have the same problems.

[Helen_BHF in reply to kel55]

Thanks very much for your feedback kel55 , this is really useful for us to know. The questions ask about a broad range of conditions, so we understand it's not always clear what option to select if you have more than one condition, or if you have a less common condition that's not named explicitly. I've passed this on so that our team can take this into account when looking at the findings. Hope this helps.

[Lee180]

Will do 👍🏻👍🏻

[michdev]

I think you are doing a brilliant job allowing people to feel that they are not alone and someone else is also experiencing the same symptoms or knows exactly what they are going through. Personally I would like some more detail about LBBB. It doesn't seem to be a popular topic on these forums at the minute.

[Helen_BHF in reply to michdev]

Lovely to hear that michdev - I'll check with our nurses as they might know where you can go for more information or support on this

We have some info on the BHF website on types of heart block including bundle branch blocks: bhf.org.uk/informationsuppo...

There's also a booklet you can download here: bhf.org.uk/informationsuppo...