heart failure's decade?

Heart Failure’s Decade?

Is this Heart Failure’s Decade?

Heart Failure has been the classic “Cinderella Syndrome”, under invested, under resourced. The vast majority of the public don’t know what it is. Until the Pumping Marvellous Foundation, formed in 2013 as a registered charity, there has never been a successful orchestrated attempt to advocate for the patient. Naturally you would stand back and say, “Aren’t we doing this for the patient?” Is this Heart Failure’s Decade?

The phrase used by so many in the health system is “the patient voice”. I hear it so many times it keeps me up at night. To be honest I don’t really know what it means.

Is this Heart Failure’s Decade? The patient voice

For too long the “patient voice” has been a tick box for many stakeholders to demonstrate they are in “working in alignment” with the patient needs. Heart Failure has the potential to be the straw that broke the camel’s back.

Is this Heart Failure’s Decade? Scale of the challenge

Around 900,000 people in the UK will be living with heart failure. The condition is debilitating and has a significant physical, psychological, social impact on people lives, and that of their families. However, the impact is further widespread than the micro health economy. It impacts macro economies. Outcomes are poor. The survival rate is worse than prostate or breast cancer. It is suggested that 30-40% of people being diagnosed with it die in the first year; the statistics go on and on. How much evidence do you need: “we must do better.” Heart failure is one of the NHS’s big red flags.

Good news

There has been some good news. Only recently the National Heart Failure Audit, which looks at hospital admissions in the NHS, saw a drop in the mortality rate, not enough, but it’s in the right direction. It also seems that the new treatment pipeline is swollen with opportunity. The challenge is to get it through the regulatory bodies into the hands of the NHS quicker.


Amid all the roller coaster statistics I believe we have turned a corner. Stakeholders are collaborating, producing forward momentum. Personally, I don’t think we have reached our peak yet. Ensuring that the patient is not only at the centre of all we do, but is out there in a leadership role, collaborating and shaping what the future holds. So is this heart failure’s decade?

Population insights

Instead of getting individual patient insights, healthcare professionals get this every day, I believe we should be talking to vast populations of patients, delivering insights back into researchers, academics, healthcare professionals, NICE, the Department of Health and companies. Why? Because your customers can help you make better decisions that affect them.

Talented energetic people

Coming from such a poor position things can only get better for those living with Heart Failure. There are bright, committed and talented people out there in heart failure land who are making a difference, I know many of them and the patients need to support them, as they need to support the patients, which they do daily. Heart failure has an opportunity to be shaped naturally by the many hundreds of thousands of patients insights informing people in the know what patients need. I also believe there is a movement, a ground swell of optimism from patients that needs “bottling” and distributing to those who make decisions. Those in the know need not think it’s a “genie” in the bottle, they need to believe in the value of those insights. The challenge of heart failure is bigger than those in the know. We not only need to deliver this bottle but we need to validate their understanding. This is the role of the patient group, this is what we do.

The Pumping Marvellous Foundation

The Pumping Marvellous Foundation not only works to support the many heart failure patients in the UK with patient information delivered to over 160 NHS heart failure teams in the UK, but also provides the socio-psychological support people need; it works with thousands of patients and family members to build marvellous insights through its social media channels, which are being driven to those in the know. Every time I get invited to speak at a conference where do I go to get my presentation content? The patient community of course, therefore my presentations reflect the needs of the many, not just one person’s opinion.

Nick Hartshorne-Evans
Founder and CEO of the Pumping Marvellous Foundation

Some useful links for you

Our “Marvellous Guides” – download them for useful information on how to live better with heart failure

Learn about about medicines for heart failure

See our YouTube channel PMTVLive

Join our patient community on Facebook

Clinical Management of Heart Failure

Clinical Management of Heart Failure

Clinical Management of Heart Failure in Europe

A new report out focussing on the state of play in Europe around the clinical management of heart failure has just been published by the Heart Failure Policy Network. The group is an independent, multidisciplinary group working to raise awareness of heart failure across Europe.

It identifies many policy priorities across the continent of Europe. The good, the bad and the ugly. The state of play examining the clinical management of heart failure is important. People diagnosed with heart failure deserve the very best treatments. This is vital to ensure that people pursue the very best quality of life. This can be coupled with determined self-management.

The crux of the report clearly identifies a simple theme. We know what to do but we just aren’t doing it. This document will provide stakeholders in heart failure with a clear set of tools. Tools that can be taken to the few who can change policy. This will make life better for people and their families managing their heart failure.

These policy documents are very useful to help stakeholders create conversations with policy makers and politicians at a national level. The question for the Pumping Marvellous Foundation is “when do we see the action”. The challenge is everybody is producing great content but when do we put that content into gear and drive the agenda.

Heart failure seems to have a very fractionated infrastructure across Europe where connecting the stakeholders to documents like this and working as one voice enables change. We could learn a lot from the cancer movement around pooling action and getting results for the benefit of the patient and their families.

Read the report click here

You can view the Heart Failure Policy Network here to see other work they do link to website

To find out more about what we do please click here for further information

Heart failure patient quote

Heart failure patient quote

The UK’s heart failure charity the Pumping Marvellous Foundation receives lot’s of very pertinent quotes from it’s members on what’s it like to live with heart failure. Once in a while one turns up and as somebody who lives with heart failure knows it really resonates. This quote so understandable from the sufferer’s point of view and should be understandable to those who don’t have it. It is worth contemplating this quote so as to understand the psychological impact of what this really means…

Patient quote -HF is like growing old

Heart Failure Community Management

Heart Failure Community Management

Heart failure community management care treatment provided by nurses at home is a viable alternative to hospital care for heart failure patients, according to Australian researchers.

A study has suggested that post-discharge condition management provided at home could be a cost-effective alternative for recently hospitalised elderly patients with chronic heart failure.

“The net benefit of home-based intervention appeared to be pronounced among the patients with a low level of self-care confidence or with fewer co-existing diseases” said Shoko Maru, Lead Study Author.

It showed that specialist home care could both reduce mortality and readmissions to hospital among heart failure patients.

The study, a collaboration between Griffith University in Queensland and the Australian Catholic University in Melbourne, involved data on 280 patients at public sector hospitals.

It compared a home-based intervention delivered by specialist nurses and community-based health professionals – GPs and community pharmacists – versus the traditional clinic-based intervention delivered by a specialist clinic based in the hospital.

Intervention was provided for up to 1.5 years with median follow-up of 3.2 years.

The groups were compared in terms of total healthcare costs and quality-adjusted life-years – years of life adjusted for their quality.

<h2>Heart Failure Community Management Study Outcomes</h2>

“Compared with clinic-based intervention, home-based intervention is likely to be cost-effective in elderly CHF patients with significant comorbidity,” said the researchers in the International Journal of Cardiology.

Dr Maru said those in the home-based group lived longer and when they did require readmission their hospital stay was shorter.

She added: “Our findings inform the long-term cost-effectiveness of intervention intended for a lifelong disease such as chronic heart failure.”

Hopefully this study will further demonstrate the benefits of heart failure community management. Patients value the intervention of having a heart failure community management program delivered by specialist nurses either at home or in a community setting.

Heart failure rehabilitation

Heart failure rehabilitation

Cardiac rehabilitation programs offer many benefits to heart failure patients, but only one in 10 are referred to such programs, a new study reveals published in the Journal of the American College of Cardiology

Strong evidence

There is strong evidence that cardiac rehabilitation therapy improves heart failure patients’ quality of life and reduces their risk of hospitalisation, the researchers noted. The programs include exercise training, education on heart-healthy living and counselling.

The researchers analysed data from more than 100,000 heart failure patients in the United States who were discharged from hospitals between 2005 and 2014 and were eligible for cardiac rehabilitation programs.

Overall, slightly more than 10% of the patients were referred for rehabilitation when they left the hospital. Referral rates did increase during the study period, but remained low.

Younger patients and men were more likely to be referred for rehabilitation than older patients and women. Those who received referrals were also more likely to be prescribed recommended heart failure medications when they left the hospital.

Startling under referral rates

“Although we expected some under-referral to cardiac rehabilitation in the heart failure population, the results of this study are startling,” study senior author Dr. Gregg Fonarow, a professor of cardiology at the University of California, Los Angeles, said in a university news release.

Given the benefits of these programs and the rising costs of hospitalisations, “our findings point to the need for better strategies to increase physicians’ and patients’ awareness about the importance of cardiac rehabilitation,” he added.

Fonarow said doctors who are more likely to incorporate state-of-the-art therapies to manage heart failure patients are also more apt to refer them to rehabilitation programs.

“This suggests that raising awareness about the benefits of these programs may be an effective strategy for increasing referrals,” he said.

Transplant drug limits heart attack damage

Transplant drug limits heart attack damage

New research has revealed how a drug commonly used after transplant operations could limit some of the heart damage caused by heart attacks, in a study from Newcastle University.

The findings published in The Journal of Clinical Investigation suggest that temporarily decreasing a part of someone’s immune system could be beneficial immediately after a heart attack. After an organ transplant, drugs like cyclosporin are used to suppress the body’s immune system to stop it rejecting a donated organ, and scientists now think these transplant drugs could also hold the key to of how to limit heart attack damage.

During a heart attack, a clot starves the heart of blood and can cause lasting damage. The heart is then damaged further by a mixture of chemicals and cells that rush into the heart as blood flow is restored when a stent is inserted to open the blocked artery. Doctors are currently unable to prevent or repair this damage and do not fully understand how the chemical build-up causes such severe damage.

Someone has a heart attack in the UK every three minutes and when the heart becomes significantly damaged, a person can develop heart failure, a debilitating and ultimately fatal condition. Over half a million people in the UK are suffering from heart failure.

Transplant drugs offer potential for limiting heart attack damage, in a study from researchers at Newcastle University

These new findings suggest that white blood cells called T-lymphocytes are responsible for a significant part of the heart damage, as they can become activated during a heart attack and travel into the heart muscle. Once inside the muscle tissue, they can release toxic chemicals that kill off parts of the heart. Normally these T-lymphocytes and their toxic chemicals would be used to fight infection.

At the Freeman Hospital in Newcastle, the team studied 1,377 people for three years following a heart attack. The patients who, after treatment to clear the blocked artery, lost the most lymphocytes from their blood were almost five imes more likely to die, compared to those where their lymphocytes remained in the blood stream. The researchers believe that as well as travelling into the heart muscle and damaging it, the lost lymphocytes could be stuck, clogging up the lining of the blood vessel walls and stopping much-needed nutrients in the blood from getting into the heart.

In a small clinical trial, the team are now investigating how cyclosporin could limit heart damage after a heart attack by suppressing the activation of T-lymphocytes, stopping them from travelling into the heart muscle and damaging it.

Drugs to target heart damage

Professor Ioakim Spyridopoulos (pictured), funded by the British Heart Foundation and Director of the Newcastle University Cardiovascular Research Centre where the research was carried out, said: “Our research investigates exactly how we can target heart damage after a heart attack, and suggests drugs that could help.

“The beauty of this research is that we have used our new understanding of what happens inside the heart to help identify a potential drug that is already in use. If successful, heart attack patients could see the benefit of the study within a few years.”

Professor Jeremy Pearson, Associate Medical Director at the British Heart Foundation, which co-funded the research, said: “This careful clinical investigation suggests that we could improve the outcome for the 500 people who go to hospital with a heart attack each day in the UK.

“By using a drug already commonly given to transplant patients, their findings can be immediately tested in heart attack patients.  We look forward to the outcome of Professor Spyridopoulos’ trial.”

* This research was funded by the British Heart Foundation and the National Institute of Health Research (NIHR) Newcastle Biomedical Research Centre.

What is Entresto?

What is Entresto?

What is Entresto? , it sounds like a Superhero Comic character, formally called LCZ696 is a blockbuster success but only time will tell. The biggest challenge for Novartis, the Swiss based company will be to convince healthcare professionals to move people off “cheap generics” which have been the mainstay of heart failure therapy for many years. Will the young pretender to the crown of “Gold Standard therapy” make it? well only time will tell. As we live in an evidence based medical society Entresto has a great deal of evidence built via the PARADIGM HF trial as to why it is seen and has demonstrated blockbusting qualities that most other condition areas would only dream of.

What is Entresto? the medical bit

Entresto is a first in class medicine (an ARNI, Angiotensin Receptor Neprilysin Inhibitor) that reduces the strain on the failing heart. A twice-a-day tablet, it acts to enhance the protective neurohormonal systems of the heart (NP system) while simultaneously suppressing the harmful system (the RAAS).[5]

Results from the 8,442 patient PARADIGM-HF study showed, versus enalapril, Entresto[1]:

– reduced the risk of death from cardiovascular causes by 20%
– reduced heart failure hospitalizations by 21%
– reduced the risk of all-cause mortality by 16%

Overall there was a 20% risk reduction on the primary endpoint, a composite measure of cardiovascular death or time to first heart failure hospitalisation.

Fewer patients on Entresto discontinued study medication for any adverse event compared to those on enalapril. The Entresto group had more hypotension and non-serious angioedema but less renal impairment, hyperkalemia and cough than the enalapril group.[1]

We hope that this will be the start of new therapeutic developments in heart failure which has historically been the “Cinderella” of the bunch.



PPCM toolkit

PPCM Toolkit

We will be launching our new PPCM toolkit in the next couple of weeks. They have just come back from the printers and they look amazing. They have been put together by some of our patient educator mums who want to make sure that Mums who go through PPCM realise they are not alone. The toolkit has been signed off by our healthcare professionals. You can download a copy of the PPCM Toolkit here

PPCM selfie

PPCM backfie

Angela Graves talks to the Nursing Times

Angela Graves talks to the nursing times about her career in heart failure care

Angela Graves is the clinical lead for the Pumping Marvellous Foundation. She tells her story to the Nursing Times about her career and now why she is part of The Pumping Marvellous Foundation and why she speaks for the patient.

Here is the article from the nursing times

Nursing Times - Angela Graves


Download as a PDF to read


Heart Failure is confusing people

In a recent online survey of 1,600 people in the US, 70% had heard of ‪‎heart failure, but two-thirds of those surveyed confused signs of heart failure with those of a heart attack.

Also, 58% thought it was “a natural cause of death that occurs when the heart stops beating” and 46% thought it was “a silent killer with no symptoms.”

The American Heart Association (AHA) announced the results in a press release for the survey it commissioned with support from Novartis Pharmaceuticals