Pumping Marvellous

Don’t Fail on Heart Failure

Don’t Fail on Heart Failure

“Britain Shouldn’t Fail on Heart Failure, the Cinderella Condition”

Tuesday 18 June 2013 -12.30pm at Churchill Room, Palace of Westminster

The Pumping Marvellous Foundation, the UK’s heart failure charity will be hosting a landmark parliamentary reception on Tuesday 18^th June 2013 where heart failure patients and eminent cardiologists supporting their cause across the UK will highlight critical heart failure issues to MP’s and senior members of the Department of Health stating that we are failing as a country to recognise the catastrophic effects that a diagnosis of heart failure brings to many 100,000’s of UK families.

Prognosis for heart failure is worse than the vast majority of common cancers. 40% of people die within the first twelve months after diagnosis.

Heart Failure affects an average of 1000 people in every Parliamentary constituency. The patient, charity and expert cardiologists will have the opportunity to speak to more 100 MPs and senior members of the Department of Health about the lack of recognition and support for heart failure patients, what it is like to live with heart failure and the postcode lottery that is apparent reference the access to the latest pharmaceutical drugs and life altering cardiac resynchronisation therapy via implantable devices.

All this to achieve parity of care alongside other long term conditions like cancer. People with diabetes don’t have to pay their prescription fees, people with heart failure do.

Background to heart failure

The condition means that someone’s heart cannot pump sufficient blood to meet their body’s needs. It impedes the ability to work and carry out basic daily activities. It has a prognosis worse than most common forms of cancer with over a third of patients dying within one year of diagnosis. Unfortunately those affected by heart failure do not have the support that cancer sufferers receive. The costs to the NHS of heart failure are also dramatic.

Heart Failure accounts for 2% of all NHS hospital bed days and 5% of all emergency hospital admissions and there are up to 750,000 people who have Heart Failure in the UK.

Nick Hartshorne-Evans, CEO and Trustee of Pumping Marvellous says:

“Optimum patient after-care and reduced burden to the NHS is at the heart of the Pumping Marvellous approach. For many people, hearing the words “heart failure” sounds like a death sentence, but with effective clinical and self-management techniques this does not have to be the case.

The aim of this reception is to highlight and discuss the clinical and psychological impact on patients and their families as well as the issue of equality of care.

Heart failure is a disabling condition and, despite improvements in treatment and management, generally has a poor prognosis. Patients with heart failure suffer from both the physical and emotional implications of the condition, along with financial concerns associated with inability to work or reduced ability to work. Lifestyle and self-management play an important role in the management of heart failure.

The Reception will take place on Tuesday 18 June, from 12.30pm to 3pm at Churchill Room, Palace of Westminster.

Ends

Interview Opportunity: Please contact:

Nick Hartshorne-Evans – CEO – +44 7854 407050

Caroline Terry – Trustee –   +44 07894 496077

Pumping Marvellous Foundation   Tel: 0800 9 788133 ( +44 1282 778059)

Notes to editors

About The Pumping Marvellous Foundation

Pumping Marvellous is the UK’s heart failure charity and was established in 2010 by Nick Hartshorne-Evans from Lancashire. Nick was diagnosed with heart failure in 2010, and with support from NHS East Lancashire’s heart failure team, has subsequently set up The Pumping Marvellous Foundation, to support newly and existing heart failure patients, their carers and their families.

Heart Failure

Heart failure is a clinical syndrome in which the ability of the heart to pump sufficient blood around the body is impaired, causing symptoms such as fatigue, breathlessness and fluid retention (swollen ankles).

There are a number of treatment options in the management of heart failure including angiotensin converting enzyme (ACE) inhibitors and beta blockers. Medical devices, such as cardiac resynchronisation therapy, are also options for some patients and have dramatic effect on quality of life.

The management of heart failure represents a significant cost burden to the NHS. Nationally, people with heart failure account for about 5% of all admissions to hospital and one million bed days, with readmission rates among the highest for any common condition in the UK (as high as 50% over three months).

References

• NHS East Lancashire, East Lancashire Heart Failure Guidelines for Secondary Care, available at http://www.elht.nhs.uk/index.php/patientsvisitors/230/, last accessed February 2013
  • NICE guidelines for the management of chronic heart failure in adults in primary and secondary care. Available at www.nice.org.uk/nicemedia/live/13099/50517/50517.pdf Last accessed May 2013
  • American College of Cardiology, conference 2012 [reference to be updated]
  • NICE guidelines for the management of chronic heart failure in adults in primary and secondary care. Available at www.nice.org.uk/nicemedia/live/13099/50517/50517.pdf Last accessed February 2013
  • Petersen S, Rayner M, Wolstenholme J. Coronary heart disease statistics: heart failure supplement. London: British Heart Foundation, 2002. available www.heartstats.org Last accessed February 2013
  • Juenger J, Schellberg D et al. Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables. Heart. 2002;87:235-241
  • Petersen S, Rayner M, Wolstenholme J. Coronary heart disease statistics: heart failure supplement. London: British Heart Foundation, 2002. available www.heartstats.org Last accessed February 2013
    • NICE guidelines for the management of chronic heart failure in adults in primary and secondary care. Available at www.nice.org.uk/nicemedia/live/13099/50517/50517.pdf Last accessed February 2013
    • NHS Heart failure commissioning guide available at: http://www.improvement.nhs.uk/heart/Portals/0/documents2008/HF_commissioning_guide.pdf Last accessed February 2013
    • National heart failure audit 2012 Available at :
    • https://www.ucl.ac.uk/nicor/audits/heartfailure/additionalfiles/pdfs/annualreports/annual12.pdf Last accessed May 2013

Heart Failure Toolkit Launch

We have confirmed that Pumping Marvellous will be handing over it’s first Heart Failure toolkits to the NHS on 14th February 2013 on the cardiology wards at the Royal Blackburn. the HEart Failure toolkit has 42 components and is a complete self care patient management system. We believe that this is the most comprehensive discharge and educational coaching tool for heart failure patients. If you have any questions about our toolkit or would like to have the toolkit for your trust then please email us.

Pumping Marvellous Heart Failure Toolkit

These are the key findings from the National Heart Failure Audit 2010-2011. The information below indicates the findings of the Audit and key findings.
Between April 2010 and March 2011, 133 out of 156 (85%) NHS Trusts and Welsh Health Boards participated in the audit and submitted data on 36,504 patient records. This is a 71% increase in the number of records collected from 2009/2010.
• Nationally the audit represents approximately 54% of all patients discharged from hospital with a primary discharge diagnosis of heart failure – this is an improvement in case ascertainment from 42% of all patients represented in the 2009/10 audit. However, case ascertainment differs significantly between England (58%) and Wales (7%) and also between individual Trusts
• Data completeness for core fields achieved similarly high rates as in 2009/10.
• Treatment rates at discharge for contemporary disease modifying therapies are similar to last year.
• Treatment rates for diuretics (86%) and angiotensin- converting enzyme (ACE) inhibitors/angiotensin receptor blockers (ARB) (81%) remain high.
• Beta blocker prescription rates are similar to those of last year (65%). This is still suboptimal.
• Only 36% of patients were prescribed aldosterone receptor antagonists (ARA).
• Treatment rates for ACE inhibitors/ARBs and beta blockers are significantly better when patients are admitted to cardiology rather than general medical wards.
• Mortality rates remain high, with 33% of patients in the audit dead at the end of the follow up period (median follow up of 306 days).
• In hospital mortality rates were at 11.6%, higher than in contemporary US and European registries.
• The overall death and/or readmission rate to hospital with heart failure during the period of the audit was 51%, almost identical to last year’s data.
• In-patient mortality rates are better for those admitted to cardiology wards (8%) compared to those in general medical wards (14%) and other wards (17%), figures which are only partly accounted for by known confounders such as age and co-morbidity.
• Mortality rates after discharge are significantly better for those who receive cardiology follow up (18% vs. 31%) and those referred to heart failure specialist nursing services (22% vs. 27%) compared to those who do not. Again these differences are not solely due to differences in patient characteristics.
• Mortality rates with key medical treatment (ACE Inhibitors/ ARBs, beta blockers, ARAs) are substantially lower than without such therapy. Access to these drugs is higher for patients admitted to cardiology ward.

You can read the full Audit here – Heart Failure Audit 2010-2011

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Seaweed for the Heart

Seaweed has only been used for medicinal purposes for many years however researchers at Teagasc have been investigating lipids from a variety of Irish and Canadian seaweed species for their heart-health properties.

In both Ireland and Canada seaweeds have a long tradition of use. In Ireland, for example, approximately 36,000 tonnes of seaweed are harvested annually. Seaweed species of commercial interest in Ireland include Laminaria digitata and Fucus species (Fucus vesiculosus, Fucus serratus and Fucus spiralis), which are harvested primarily for their valuable carbohydrates, Laminarin and Fucoidan, respectively. The value-added sector of the seaweed industry in Ireland has emerged to produce attractive, high-quality products for use as functional body care products and cosmetics.

However, there is, to date, limited activity aimed at exploiting Irish seaweed resources as materials for functional food ingredients with enhanced health benefits that go beyond basic nutrition for the consumer.

Seaweeds are known to contain a number of heart-health compounds, including ACE inhibitors, antioxidants and essential fatty acids (lipids). As part of a research collaboration with the Memorial University, Newfoundland, Michelle Tierney and Dr Maria Hayes developed methods for the isolation of total lipids from a number of seaweed species.

“Seaweeds are a known source of essential fatty acids, which are thought to reduce thrombosis and atherosclerosis — factors important in the reduction of the risk of heart disease,” explains Dr Hayes.

Of the eight Irish and Newfoundland seaweed species used in this study, the Irish seaweed, Pelvetia canaliculata, had the highest percentage of total lipids per dry weight, followed by the sustainable Irish seaweed Ascophyllum nodosum. Further work is currently underway at the Teagasc Food Research Centre, Ashtown, concerning the bioactivity profiles and bioactive component isolation of all seaweed lipid extracts.

“These lipids could potentially be used in food vehicles such as bread and soup type products in the future,” said Dr Hayes.

Now before you go down to the beach and harvest your own seaweed ask yourself how clean the water is? Seaweed extract is found in many supplements and due to its properties as a Heart Failure patient you will need to make your clinician aware whether it be Nurse or Doctor that you are taking supplements as some supplements can have an affect on prescription medication.

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All pumped up with Omecamtiv Mercabil

I know this is a bit technical but a new drug has just been through small Phase II clinical trials  with some . The new drug is called Omecamtiv Mercabil and has been developed by a new drug company called Cytokinetics and is licensed to Amgen as reported in the Lancet.

It targets the motor proteins that cause muscle contraction and prolongs the action of the left ventricle of the heart, which pumps blood around the body. Rather than make the heart beat more often like current medicines, omecamtiv mercabil makes the heart muscles contract for longer, which increases the volume of blood the heart pumps with each stroke without increasing the amount of energy used.  That means it should not exhaust the heart, which can occur with currently-used inotropic agents.

The Phase II trial compared the intravenously-administered drug to placebo in 45 heart failure patients with impaired function of the left ventricle, who were also taking background therapy with ACE inhibitors and beta blockers. Omecamtiv mercabil increased left ventricular ejection time and stroke volume compared to control, alongside a small reduction in heart rate, suggesting that the hearts were working more effectively and efficiently.

According to Professor John Cleland of the University of Hull in the UK heart failure affects around 10 million people in the EU alone  who led the trial. “This is a totally new concept,” said Prof Cleland. “We need to see whether the improvements in cardiac function translate into real benefits for patients, in terms of their symptoms and quality of life, and whether it can impact on mortality and morbidity.”

Another Phase IIb trial should start next year, and if successful the drug could be on the market within the next three to four years, said Prof. Cleland. Cytokinetics is also developing oral formulation of omecamtiv mercabil, but this is unlikely to be ready to submit for approval for five years or more.

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Frightening Similarities

As you may or may not know one of the goals of Pumping Marvellous is to get Heart Failure patients to the specialists in cardio care they deserve. See our main site for our goals pumpingmarvellous.org.

In December 2010 the National Heart Failure audit indicated at least 5,000 sufferers in the UK die needlessly each year because they are treated on the wrong hospital wards, while others are prescribed too little medication to be effective.

The June edition of the American Heart Journal reported nearly 70,000 Americans die each year because they do not receive optimal therapy as called for in guidelines promoted by national health authorities, researchers said Monday. Physicians have been slow to implement many of the procedures called for in the guidelines, according to the first national study of adherence to the treatment goals, the team reported in the June edition of the American Heart Journal.

Dr. Gregg D. Fonarow of UCLA’s Geffen School of Medicine and his colleagues studied six evidence-based therapies for heart failure, using data from clinical trials, in-patient and out-patient registries for heart failure patients, quality-of-care studies and other published sources.The six treatments are highly recommended for heart failure patients by the American College of Cardiology and the American Heart Association. The researchers found that 2,644,800 heart failure patients were eligible for the therapies, but did not receive them. The total number of potential deaths that could be prevented each year with optimal implementation of all six therapies is 67,996, they reported.

The therapies included four different families of drugs, cardiac resynchronization therapy (which helps coordinate heart contractions and arrythimias) and implantable cardioverter-defibrillators (which shock hearts beating erratically back into a normal rhythm). The estimated number of lives that could be saved by wide implementation of each therapy, they estimated, are:

– Aldosterone antagonists, 21,407.

– Beta blockers, 12,922.

– Angiotensin-converting enzyme (ACE) inhibitors, 6,516.

– Hydralazine/isosorbide dinitrate, 6,655.

– Cardiac resynchronization therapy, 8,317.

– Implantable cardioverter-debrillators, 12,179.

The findings “have significant clinical and public health implications” because tens of thousands of lives could be saved with optimal implementation of the therapies, Fonarow said in a statement. Pointing out which therapies are not sufficiently used, he added, will push clinicians toward a more careful examination of their treatment strategies.

Ace inhibitors and a cough

Some people notice that they get a ticklish, dry cough when they first start taking ACE-inhibitor drugs like ramipril. Usually this gets better in a few weeks as your body gets used to the new drug. Starting at a low dose and building the dose up slowly helps.  More than often the cough is due to something else but in other cases it can be persistent.
It is rare for the cough to be severe and persistent from taking an ACE-inhibitor, enough to make you want to stop taking the drug, but if it is, there are several options so don’t worry. There is another class of drugs that blocks the receptor that the Angiotensin Converting Enzyme acts on. These ACE receptor blocker drugs usually end in “-artan,” so you will see names like losartan or candesartan. These drugs seem to have similar effects to the ACE-inhibitors. They do not cause a cough and are therefore easier to take for people who have trouble taking ACE-inhibitors. The ACE receptor blockers have not been on the market as long as ACE-inhibitors, and there are not as many long-term research studies about them, but what is known so far is very encouraging. Like the ACE-inhibitors, they help lower the blood pressure and seem to protect the kidneys from damage that causes you to lose protein in your urine.

The reson why these class of drugs are prescribed to heart failure patients is that “in patient speak” it widens the blood vessels and they become a little bit more elastic therefore taking some of the strain and stress off the heart as the blood vessels and arteries are wider. It is very important to keep taking your prescribed drugs but if there is a problem then there is generally another solution like mentioned above.

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Variation in Mortality Rates for Heart Failure Patients

Another reason for Pumping Marvellous to exist and flourish, especially for those without support.

A major new audit of heart failure patients in England and Wales has uncovered wide variations in mortality rates.

The National Heart Failure Audit analysed 21,294 medical records for patients admitted to hospital for heart failure between April 2009 and March 2010. It found that, overall, about 32 per cent of heart failure patients died within a year of hospital admission.

The report underlined the value of cardiologists and specialist heart failure services, as mortality rates fell to 23 per cent for patients with access to these. It also showed that in-patient mortality is 12 per cent for heart failure patients on a non-cardiac ward, compared to just six per cent for those on dedicated cardiac wards.

Clinical lead Dr Theresa McDonagh, chair of the British Society for Heart Failure, said: ‘This audit shows that patients admitted to hospital with heart failure have an unacceptably high death rate.

‘Outcomes for these patients can be significantly improved by having specialist cardiology input to their care, administration of appropriate evidence-based doses of key drugs and follow-up by specialist services.’

The audit, which is run jointly by the NHS Information Centre and the British Society for Heart Failure, also revealed that many patients do not get the recommended dose of drugs such as ACE inhibitors and beta blockers.

Just 60 per cent of patients for whom dosing information was available were prescribed beta blockers – which can reduce mortality by around a third – and two-thirds received less than half of the recommended dose.

And of those patients for whom information was available on ACE inhibitors – which can halve mortality during the first year after discharge – half received less than 50 per cent of the target dose.

Dr Mike Knapton, associate medical director of the British Heart Foundation, said that treatment for heart failure should be given the same priority as that for heart attacks.

‘But while there have been huge improvements in the management of heart attack patients, the same cannot be said for people with heart failure,’ he claimed.

‘There are more than 700,000 people living with heart failure in the UK and this number is set to increase, so it’s vital we address this issue.’

Without sounding arrogant we could have told you so on each statement made within the commentary above.

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Dark Chocolate and Blood Pressure

Want to keep your blood pressure under control? Start eating dark chocolate, scientists say.

It is already known that dark chocolate contains high levels of antioxidants that are thought to be beneficial to health.

Now, a team of researchers in Sweden have revealed that dark chocolate works on the body in the same way as blood pressure pills.

They discovered that dark chocolate, which contains large amounts of cocoa, inhibits an enzyme that raises blood pressure.

Study`s lead author Ingrid Persson said that it contains high levels of compounds called catechins and procyanidines, both of which have been shown to affect blood pressure.

She added that with other factors such as a balanced diet and not smoking, dark chocolate could be a good way to lower risk of heart disease and stroke.

In the study, 10 men and six women had blood samples taken before and after eating 75 grams of dark chocolate – a large piece. Within three hours, the team saw that a blood pressure enzyme known as ACE had been inhibited by up to 18 per cent.

This is as effective as ACE inhibitor drugs currently given to the millions of patients with high blood pressure.

`We have previously shown that green tea inhibits the enzyme ACE, which is involved in the body`s fluid balance and blood pressure regulation,` the Daily Express quoted Perrson as saying.

And no we haven’t got shares in a chocolate company but I just fancy a bit of Green and Blacks Dark Chocolate.

Thin Air Treatment for Heart Failure

Heart-failure researchers are testing a provocative hypothesis: whether a technique used by elite athletes to improve endurance can help some of medicine’s sickest patients improve their ability to exercise and function in their daily lives.

The technique simulates high-altitude training in which cyclists and other endurance-sport athletes sleep in sealed tents where oxygen levels mimic the thin air at mountain elevations in a bid to improve their performance at normal heights. Now a pilot study is under way to see if thin air is a boon to heart-failure patients as well.

The idea may seem counter-intuitive. A common symptom of heart failure, a chronic weakening of the heart muscle that compromises its ability to pump blood, is shortness of breath. Patients often have difficulty climbing a flight of stairs or walking a block or two.

But Simon Maybaum, medical director of the Montefiore-Einstein Center for Advanced Cardiac Therapy in the Bronx, N.Y., says the problem in heart failure isn’t a lack of oxygen, but poor blood flow. He thinks the physiological changes athletes gain from a “sleep-high” strategy can help improve the ability of heart-failure patients to get more oxygen to body tissue and gain endurance as a result.

“The same changes that occur in an athlete should also benefit people who have cardiac dysfunction,” Dr. Maybaum says.

The role of exercise in heart-failure patients is still being studied. Cardiologists say some small studies have shown the benefits of exercise, but it is still an open question whether improved exercise performance dramatically lowers mortality and hospital rates from heart failure.

Dr. Maybaum is principal investigator of a pilot study testing the high-altitude approach. It will enroll 15 people who have stable chronic heart failure. The participants all take medications and use pacemakers but are still limited in the activities they can do. As part of the trial, the patients sit in four-hour sessions inside a tent where the oxygen level is slowly reduced to mimic what is experienced at high altitudes. They start at a level equivalent to 1,500 meters altitude, going up over the course of 10 sessions to 2,700 meters.

In athletes, the regimen can increase red blood cells, improve the efficiency with which these cells transport oxygen, boost lung volume and help muscles use oxygen more efficiently—all things that should help heart-failure patients, too, says Dr. Maybaum.

The trial comes at a time when clinicians and researchers are calling for new thinking about how to treat heart failure. There are an estimated 400,000 new cases every year, and the number is expected to rise further as the population ages. Drugs like ACE inhibitors and beta-blockers used in the treatment of high blood pressure and other cardiovascular diseases have helped in many cases, but they don’t work for everyone. “We’ve hit the wall in terms of what we’re able to do for these patients with our current therapies,” says Howard Rockman, a cardiologist and professor of medicine at Duke University.

For many patients, current therapies may improve heart function, but fail to increase exercise tolerance. Doctors who treat heart-failure patients say that over time, the fitness level of patients with the disease deteriorates.

“The less they do, the less they can do, so they get even more de-conditioned, and this affects their quality of life,” says Ileana Pina, a professor of medicine and epidemiology/biostatistics at Case Western Reserve University and chairwoman of the steering committee on an trial funded by the National Institutes of Health that looked at whether exercise improved outcome in heart-failure patients.

One participant in the pilot study is Hector Valentin, a 52-year-old salesman for a flooring company who lives in the Bronx, N.Y. He has suffered from heart failure for six years. He takes medications, has a pacemaker, but tires easily. A baseball fan, Mr. Valentin explains the concept of the study to friends and family by comparing it to a batter who warms up before his turn at bat with a weighted doughnut on the bat.

“The doughnut makes the bat heavier, so when you take it off, the bat feels lighter and it’s easier to swing,” says Mr. Valentin.

A key measure in the trial is one that athletes use to gauge performance: peak oxygen consumption—the rate of milliliters of oxygen per kilogram of body weight the body uses during maximum exertion on a bicycle or treadmill.

Dr. Maybaum says peak oxygen values fluctuate depending on age and fitness levels in the normal population. A collegiate rower might have a peak oxygen-consumption level in the high 40s ml/kg/min. Heart-failure patients’ levels range from 10 into the 20s.

When Mr. Valentin enrolled in the study, his peak oxygen value was 13.8 ml/kg/min. After the altitude training, the number went up to 15.9, a significant increase, Dr. Maybaum says.

Mr. Valentin says he feels better after the sessions. The other day, he walked up five flights of stairs; he used to tire after two flights.

“It’s hard to tell if the benefits will last,” he said, “but I don’t feel tired.”

Dr. Maybaum hopes that the high-altitude study eventually shows that heart-failure patients can sleep inside tents at home, just as some athletes do, and find it easier to be active and exercise during the day.