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

For help with Heart Failure call 0800 9788133

Social and welfare factors and Heart Failure

There is an increasing trend in heart failure, mainly due to the aging of the population. However researchers at Western Infirmary in Glasgow have looked at the impact of social and economic deprivation in the diagnosis and treatment of heart failure in over 2,000 people taking part in a health project.

The researchers found that the incidence of heart failure increases significantly with increasing social deprivation. Those patients falling into the social deprivation category were 44%  more likely to develop heart failure than more affluent patients. And those in the deprived groups had 23%  fewer follow up visits each year with their general practitioner. However, prescribed treatment did not differ with social or economic status. More needs to be learned  about why socioeconomic factors influence heart failure, so that outcomes for all can be improved.

We are glad that there is now evidence which needs to be put to clinicians that socioeconomic factors do have a dramatic effect on Heart Failure outcomes.

Heart Failure Nurses Conference

On Wednesday 8th of May, Pumping Marvellous hosted a conference with the East Lancashire Hospital Trusts Heart Failure Nursing Team where over 80 Nurses attended and learn’t about the innovative approach to heart failure patient management. Pumping Marvellous founder Nick Hartshorne-Evans represented the patient voice and gave his story of what happened to him and the resulting after effects of a diagnosis of heart failure.

Both the nursing team and the charity have received great feedback and we will be doing this on a regular basis. This just highlights the needs and requirement of parity in care for patients and their carers.

Heart Failure Nurses Conference with 80 attendees

Gene Therapy for UK Heart Failure Patients 

British Heart Foundation (Photo credit: Wikipedia)

Patients with severe heart failure are to be treated with gene therapy for the first time in Britain.Earlier clinical trials have suggested the treatment could reverse damaging changes inside cardiac cells that weaken the muscle and reduce the ability of the heart to pump blood.

The condition affects up to 1,000,000  people in the UK.

Doctors backed by the British Heart Foundation will give 100 patients an infusion of a harmless virus that has been genetically engineered to carry an extra gene, called SERCA2a.

The virus infects cardiac cells. Once inside, the gene becomes activated and makes a protein crucial to normal beating of the heart.

Dr Alexander Lyon, consultant cardiologist at The Royal Brompton Hospital, is leading the Cupid 2 trial. He said: “When the heart muscle is injured it activates a series of compensatory changes, but over time fatigue sets in which results in the natural version of this gene switching off. ”When the gene is repaired it produces more of the functional protein and the problem is reversed.”

The first patients will be given the treatment in the next three to six weeks at hospitals in London and Glasgow.

They will be tracked and compared to another group of study volunteers who will receive a dummy treatment.

A previous pilot study in the United States found the treatment dramatically reduced emergency hospitalisations and deaths.

The 39 patients given the gene are still in a stable condition after three years.

Professor Sian Harding, head of the British Heart Foundation’s Centre for Regenerative Medicine at Imperial College London, whose team developed the therapy, said: “It’s been a painstaking, 20-year process to find the right gene and make a treatment that works. ”But we’re thrilled to be working with cardiologists to set up human trials that could help people living with heart failure.”

Economic costs of Heart Failure set to Sky Rocket 

The journal “Circulation” has published today that the number of Americans with heart failure could rise 46%, from 5 million in 2012 to 8 million in 2030, new research says. This should be awake call for the UK considering similar public health profiles.

Also potentially the direct and indirect costs of treating the condition could more than double, from $31 billion to $70 billion, over the same time period.

This means that by 2030, every U.S. taxpayer could be paying $244 a year to care for heart failure patients, according to the American Heart Association policy statement. It said the findings highlight the need for strategies to prevent and treat heart failure.

Heart failure is the leading cause of hospitalisation for Americans over age 65. The rising number of people with heart failure is the result of an aging population and an increase in the rates of conditions that contribute to heart failure, such as high blood pressure, diabetes and heart disease.

“If we don’t improve or reduce the incidence of heart failure by preventing and treating the underlying conditions, there will be a large monetary and health burden on the country,” said Dr. Paul Heidenreich in an American Heart Association news release. “The costs will be paid for by every adult, not just every adult with heart failure.”

“Awareness of risk factors and adequately treating them is the greatest need,” said Heidenreich, a professor of medicine at Stanford University School of Medicine and director of a chronic heart failure research initiative at the VA Health Care System in Palo Alto, Calif.

The statement includes recommendations on how to tackle the issue. These include the following:

• More effective distribution and use of therapy recommended in guidelines to prevent heart failure and improve patient survival.
• Improving the coordination of care when hospitalised patients go home in order to help them achieve better outcomes and reduce their risk of having to return to the hospital.
• Specialised training for physicians, nurses, pharmacists and other health care professionals on advanced heart failure care.
• Improving heart failure prevention and care for minority groups and lower-income people.
• Increasing access to palliative and hospice care for patients with heart failure in advanced stages.

The statement was published online April 24 in the journal Circulation: Heart Failure.

St Augustines RC High School in Billington gets a defibrillator

35 teachers and support staff went through an intensive AED familiarisation along with basic life saving skills with Pumping Marvellous and the North West Ambulance Service.

St Augustines RC High School in Billington gets a defibrillator

St Augustines RC High School in Billington gets a defibrillator

Heart Failure + Depression = Bad Chemistry 

Now we all know how important it is to not get depressed about your condition so certainly to us this is not surprising however this is a strong step in the right direction to demonstrate the importance of being positive.

Depression could make heart failure even more fatal, a new study suggests.

Researchers from the Mayo Clinic in the US found that people with heart failure who are moderately to severely depressed have a 4x higher risk of death, compared with people with heart failure who are not depressed. They also have a 2x higher risk of being hospitalised or having to go to accident and emergency.

The study shows just how important it is to pay attention to patients’ mental health, as “depression is a key driver of healthcare use in heart failure,” study researcher Alanna M. Chamberlain, Ph.D., M.P.H., an assistant professor of epidemiology at the Mayo Clinic, said in a statement. The new study is published in the journal Circulation: Heart Failure.

The findings are based on 402 people with heart failure, with an average age of 73, who were from three Minnesota counties in the US. The study participants completed a survey with nine questions some time between 2007 and 2010 that analyzed their depression status. Then, the participants were followed for about a year and a half.

Researchers found an association between having depression and risk of being hospitalized or dying in the followup period. The risks went up with severity of depression. For example, according to the survey, people with mild depression were 60% more likely to die, and 35% more likely to have to visit the emergency room than those without depression. They were also 16% more likely to be hospitalised.

However, researchers did note a caveat to the findings. “We measured depression with a one-time questionnaire so we cannot account for changes in depression symptoms over time,” Chamberlain said in the statement. “Further research is warranted to develop more effective clinical approaches for management of depression in heart failure patients.”

Similarly, another new study published in the Journal of the American Heart Association shows that anxiety and depression raise risk of death among people with heart disease. Specifically, anxiety doubles risk of death from any cause among heart disease patients, and patients with both anxiety and depression have a tripled risk of dying. That finding, from Duke University researchers, is based on data from 934 people with an average age of 62.

Misdiagnosis of Heart Failure 

The most-frequent diagnostic errors are for common conditions seen by primary care doctors, including ailments such as pneumonia and heart failure that can lead to severe harm if not treated appropriately, a study found in the US.

The misdiagnoses occurred most often during the doctor’s examination, including trouble getting a complete history from the patient, performing the physical exam and ordering tests, according to research published today in JAMA Internal Medicine. Other common misdiagnoses were for kidney failure, urinary tract infection and cancer.

The findings show that doctors miss or wrongly diagnose a wide range of conditions that can be harmful to patients’ health, said lead study author Hardeep Singh. To reduce the number of misdiagnoses, more needs to be done by doctors and hospitals to engage the patient in their own health care and to improve their access to physicians, he said.

“If we do it together with patients, providers and health care systems, we will have a much deeper impact of understanding and improving this problem,” Singh, chief of health policy and quality program at the Health Services Research and Development Center at the Michael E. DeBakey Veterans Affairs Medical Center in Houston, said in a telephone interview with Bloomberg.

Ventricular re-modelling at its most exciting! 

Ventrix, Inc. announced today that its VentriGel^™cardiac repair scaffold safely and effectively mitigated left ventricular remodeling and improved cardiac function in pigs after myocardial infarction, or a heart attack. The findings, made during pre-clinical studies, were published today in the journal Science Translational Medicine. Based on these and other results, Ventrix will initiate a clinical trial for VentriGel later this year.

“These results give us strong validation that VentriGel has the potential to prevent the development of congestive heart failure in patients who are recovering from heart attack,” said Adam Kinsey, Ph.D., CEO of Ventrix. “We will continue to develop VentriGel for this indication, for which there is a very acute need and large market potential.”

As medical management and surgical tools have advanced, more and more patients are surviving heart attacks. However, damage to the heart during myocardial infarction can lead to a growth of dense scar tissue which cannot contribute to the pumping function of the heart. Over time, the heart wall will thin causing heart failure. Currently, the only successful treatments for end-stage heart failure are heart transplantation or left ventricular assist devices.

In the study, the VentriGel scaffold was injected into pigs two weeks following heart attack via a minimally-invasive catheter. Three months after injection, more cardiac muscle and less scar tissue was found in the VentriGel-treated group compared to controls that did not receive VentriGel. This led to significant improvements in contractility and cardiac function and prevented heart failure in treated animals.  Ejection fraction, one measure of cardiac function, was significantly greater after delivery of VentriGel.

VentriGel is a biomaterial scaffold designed specifically for the repair of damaged myocardium (heart muscle). It is injected via catheter in a minimally-invasive procedure that does not require surgery or general anesthesia.

Free sightseeing tour of Burnley in East Lancashire…

Pennine Lancashire 10k

In what will be the second event in the series of 10K runs this year, this new route will take you on a tour of the East Lancashire town of Burnley. Starting and finishing outside the historic Mechanics Theatre, the 10K race will see you sprinting through Thompson Park and along the lake in Ridgewood before reaching the beautiful Towneley Hall.

So if want to raise money for locally based Pumping Marvellous the UK’s Heart Failure charity then get in contact with us.