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Original poster

AIBU to want clearer, more serious online heart failure advice?

8 replies

relyonnoone · 26/08/2026 16:52

I have been diagnosed with heart failure and sent away with a single leaflet which tells me what to do in certain circumstances, and was advised to look at the 'Pumping Marvellous' website. Well, stuff that for a lark.

I've got heart failure - not pleasant and not something I want to make a song and dance about, but the website looks as if its been designed for 14 year old boys. The colours are horrendous, the font childish and I have OCD which makes trying to read anything on there very discomforting.

AIBU? Are we now expected to endure this sort on inanity when looking for serious medical help online? TBH, I'd rather go with AI!
I'd love to know what other people think. (and yes, I'm probably being unreasonable, but I simply want some serious advice, not 'sauce' or comics or the expectation that Adam West is going to appear in the next page going 'POW!'
(and that shows my age)

https://pumpingmarvellous.org/heart-failure-guide/

Heart failure guide | Pumping Marvellous

https://pumpingmarvellous.org/heart-failure-guide/

OP posts:
WintersFrog · 26/08/2026 16:54

Agreed! I'm irritated just looking at it. My mum has heart failure. She'd hate it

Motnight · 26/08/2026 16:58

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/living-with-heart-failure/5-tips-for-managing-heart-failure

Op, sorry you are dealing with this. My DH is living with heart failure so I do understand a little how hard it is. I think that the BHF is the gold standard regarding information that you might find useful. The website you have been directed to does indeed look like a comic. Have you had a heart nurse allocated to you?

5 ways to manage your heart failure

If you have heart failure, there's a lot you can do to help manage your condition and help stop it from getting worse. Professor Darrel Francis, Professor of Cardiology at Imperial College London, explains.

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/living-with-heart-failure/5-tips-for-managing-heart-failure

Rocknrollstar · 26/08/2026 17:00

I was diagnosed with Stage 3 Kidney failure, over the phone, by a health practitioner and sent the link to a leaflet. It’s beyond belief.

Original poster
relyonnoone · 26/08/2026 17:10

I haven't had a heart nurse assigned to me. Haven't been given any clear instructions other than the advice to visit this website.

I am HUGELY irritated by the awful illustrations of elderly people and the fact that no consideration is given to people who can't read small font, or who struggle to read weird fonts or cope with garish colours. I just can't believe that in this day and age this is considered acceptable as a main website for serious, possible life-saving information.

The heart failure (so far) isn't too onerous but I'm one of the lucky ones.

OP posts:
WintersFrog · 26/08/2026 17:18

WintersFrog · 26/08/2026 16:54

Agreed! I'm irritated just looking at it. My mum has heart failure. She'd hate it

Sorry @relyonnoone I meant to also add sympathy and solidarity to you. My dh was diagnosed with quite a serious long term condition. He too was sent off with a leaflet and has never seen his consultant face to face, just a phone call with the nurse 3 times a year.

Sminty2 · 26/08/2026 19:52

I was diagnosed in May. The local HF team loves all the free resources (that’s all they have tbh due to funding), but I am with you. It’s childish.

Ask your gp for a BNP and kidney function blood test. BNP shows up in the blood as a result of the heart struggling. It should be below 100, mine was 9000! Kidney function because HF meds are tough on your kidneys and you need a baseline.

Also request an urgent Echocardiogram which will show which part is failing, what your ejection fraction is (normally 60 - 70%, but with HF can be very low (mine is 13%) it shows how much blood is pumping. You also need that number to see the HF team. The guidelines on NICE say that under 20% see within 2 weeks.

You need to know all this to self advocate. Don’t think that if they aren’t doing anything you don’t need it. You DO. To prevent further rapid deterioration.

There are 4 main drugs called’The 4 Pillars’. I’m on them now and for life but they will keep me alive for a long time.

I’ll find the Guidelines link and post it

Original poster
relyonnoone · 26/08/2026 20:28

Sminty2 · 26/08/2026 19:52

I was diagnosed in May. The local HF team loves all the free resources (that’s all they have tbh due to funding), but I am with you. It’s childish.

Ask your gp for a BNP and kidney function blood test. BNP shows up in the blood as a result of the heart struggling. It should be below 100, mine was 9000! Kidney function because HF meds are tough on your kidneys and you need a baseline.

Also request an urgent Echocardiogram which will show which part is failing, what your ejection fraction is (normally 60 - 70%, but with HF can be very low (mine is 13%) it shows how much blood is pumping. You also need that number to see the HF team. The guidelines on NICE say that under 20% see within 2 weeks.

You need to know all this to self advocate. Don’t think that if they aren’t doing anything you don’t need it. You DO. To prevent further rapid deterioration.

There are 4 main drugs called’The 4 Pillars’. I’m on them now and for life but they will keep me alive for a long time.

I’ll find the Guidelines link and post it

Thank you for such a detailed answer. I have to pester my GP for blood tests on a regular basis (I have a pacemaker and had an AV node ablation so I'm up to date on most things) but I really was expecting more support from the Heart Failure team. I'm just glad I'm not the only one who thinks the website is patronising and ageist and of very little help at all.

Thank you to everyone who has posted links to better information! I apprecate the suggestions.

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