ISCOMAT Trial Leeds_Bradford

ISCOMAT trial is recruiting

ISCOMAT trial

The ISCOMAT trial is now recruiting patients across the UK. This is a large trial based around the management of heart failure medicines with patients. The ISCOMAT trial centre is based across Bradford and Leeds and is one of the largest current NIHR funded trails on heart failure across the country. The Pumping Marvellous Foundation have been at the centre of this research.

 

ISCOMAT Trial Leeds_Bradford

 

 

 

 

Do you manage or are you part of a heart failure team, do you want to get involved?

Website

Email – Professor Christopher Gale c.p.gale@leeds.ac.uk

or Dr Lauren Moreau iscomat@leeds.ac.uk

Want to learn more about Heart Failure?

Visit PMTVLive – The Pumping Marvellous Foundations YouTube channel
Visit Heart Failure Aware – The Pumping Marvellous Foundations awareness page

If you need help and you have heart failure or you are a carer of family member with heart failure come and join our marvellous heart failure community on Facebook

To learn about heart failure go to this link

Need patient information – visit this link to our marvellous library

National Heart Failure Nurse Meeting

National Heart Failure Nurse Meeting

**Please note this conference is for Healthcare Professionals only**

national heart failure nurse meeting

national heart failure nurses meeting

National Heart Failure Nurse Meeting – Radisson Blu, Manchester Airport

Please note the heart failure nurse meeting is not a Pumping Marvellous Foundation initiative and we have no involvement other than attending. We are promoting this as an excellent opportunity for Heart Failure Specialist Nurses to meet and learn for the benefit it may bring to people living with heart failure.

Want to learn more about Heart Failure?

Visit PMTVLive – The Pumping Marvellous Foundations YouTube channel
Visit Heart Failure Aware – The Pumping Marvellous Foundations awareness page

If you need help and you have heart failure or you are a carer of family member with heart failure come and join our marvellous heart failure community on Facebook

To learn about heart failure go to this link

Need patient information – visit this link to our marvellous library

HeartLogic devices

HeartLogic Diagnostic tool may reduce further hospitalisations

Please note this is a press release from Boston Scientific Europe talking about their new innovation HeartLogic

Boston Scientific Launches the HeartLogic™* Heart Failure Diagnostic in Europe

The HeartLogic Diagnostic is the first and only heart failure diagnostic tool proven to detect 70% of heart failure events several weeks in advance, potentially reducing further hospitalisation for patients with heart failure.

Vienna, Austria, May 29, 2018

– Boston Scientific Europe today announced the launch of the HeartLogic Heart Failure Diagnostic in Europe. With this launch, the first and only diagnostic tool that enables proactive heart failure (HF) care is now available for patients in select countries across Europe including Italy, Spain, UK, Germany, Austria and Switzerland, with more to follow in the coming months.

At present, heart failure affects more than 15 million people in Europe and accounts for approximately 3 million hospitalisations and numerous deaths each year.1 The HeartLogic diagnostic provides continuous measurement of early worsening signs of heart failure by combining data from sensors evaluating heart sounds, respiration rate and volume, thoracic impedance, heart rate and activity. HeartLogic’s unique algorithm is built into the Resonate™ and next generation Cardiac Resynchronization Therapy Defibrillators (CRT-Ds) and implantable cardiac defibrillators (ICDs).

“Today, heart failure is the leading cause of hospitalisation in people over the age of 65 and carries a tremendous economic burden on healthcare systems.

In fact, after initial hospitalisation, 24 percent of heart failure patients are readmitted to hospital within 30 days.2,3,4Utilising HeartLogic, physicians may be able to predict heart failure events weeks before they happen and can intervene earlier and help reduce patient hospitalisations,” said Professor John Morgan, Chief Medical Officer and Medical Director for Rhythm Management at Boston Scientific in Europe.

The Multisensor Chronic Evaluation in Ambulatory Heart Failure Patients (MultiSENSE) study evaluated the performance of the HeartLogic™ Diagnostic to predict impending heart failure (HF) decompensation. In the MultiSENSE study, HeartLogic proved to successfully detect 70% of heart failure events in advance, providing physicians with several weeks of notice in mostcases.5

“Using the HeartLogic Heart Failure Diagnostic, physicians can detect early warning signs of heart failure symptoms worsening, which gives them valuable time to address the different pathophysiological aspects of heart failure, adjust treatment, avoid potential re-hospitalisations and ultimately improve overall patient care and outcomes,” said John P. Boehmer, M.D., principal investigator and director of the Heart Failure Program at Penn State Health Milton S. Hershey Medical Centre and professor of medicine, Penn State College of Medicine.

At the Heart Failure Congress 2018 in Vienna (May 26-29), several new analyses from the MultiSENSE Study have been presented. The data revealed that HeartLogic may detect changes in rapid shallow breathing patterns and may thus enable better outcomes for HF patients:

  • Changes in the Rapid Shallow Breathing Index (RSBI) correlated with changes in patients’ dyspnoeic

For example, increased rapid shallow breathing resulted in a worsening dyspnoea status whereas minute ventilation (MV), a common marker known to be elevated in HF patients, did not.6

–       The device-measured RSBI showed to be significantly elevated in the three-day period preceding HFevents, whereas MV did not show significantdifferences.7

–       Readmissions or death were more likely when the device-measured RSBI worsened during heartfailure hospitalisation.8

 

*The HeartLogic™ Heart Failure Diagnostic is a validated diagnostic tool to detect gradual worsening of heart failure (HF) over days or weeks using multiple physiologic measurements.

In addition:

  • HeartLogic has proven robust to various patient demographics. The algorithm works effectively across different patient body types and for patients of different
  • Analysis of heart sound recording during echo evaluation in a patient with atrial fibrillation (AF) confirmed the presence of the third heart sound (S3). A device-based objective measure may thus provide more consistent assessment of S3 than auscultation in the midst of an arrhythmic rumble of

Heart failure is a chronic, progressive condition in which the heart muscle is unable to pump enough blood through to the cells of the body. This can result in symptoms including fatigue, breathing problems or coughing. Managing HF can involve multiple hospitalisations, which can have an adverse impact on patient outcomes and quality of life. Nearly half of patients (46%) are re-hospitalised for heart failure within 60 days.7

For more information, please visit: http://www.bostonscientific.com/en-EU/medical-specialties/electrophysiology/heart-logic.html

About the HeartLogic™ Heart Failure Diagnostic

The HeartLogic™ Heart Failure Diagnostic

It’s a validated diagnostic tool to detect gradual worsening of heart failure (HF) over days or weeks. HeartLogic incorporates multiple sensors and combines trend data into one composite index, sending clinicians a single actionable alert and detailed report when it crosses a clinician-set threshold. This index allows physicians to detect early warning signs of HF symptoms worsening, giving them time to address the pathophysiological aspects of HF, adjust the treatment and avoid potential re-hospitalisations.

About Boston Scientific

Boston Scientific transforms lives through innovative medical solutions that improve the health of patients around the world. As a global medical technology leader for more than 35 years, we advance science for life by providing a broad range of high performance solutions that address unmet patient needs and reduce the cost of healthcare. For more information, visit www.bostonscientific.euand connect on Twitter and Facebook.

CONTACTS

Rosie Ireland

Media Relations

Boston Scientific Europe

+44 (0)7585 403359

Rosie.Ireland@bsci.com

 

Susie Lisa, CFA

Investor Relations

Boston Scientific Corporation (508) 683-5565 (office)

Investorrelations@bsci.com

 

  • Westenbrink BD et al. Heart failure specialization in Europe. European Journal of Heart Failure (2016) 18,347–349.
  • Fonarow GC, Abraham WT, Albert NM, et al. Association between performance measures and clinical outcomes for patients hospitalized with heart failure. JAMA. 2007;297(1):61–70.https://www.ncbi.nlm.nih.gov/pubmed/17200476.
  • Fonarow GC, Abraham WT, Albert NM, et al. Factors identified as precipitating hospital admissions for heart failure and clinical outcomes: findings from OPTIMIZE-HF. Arch Intern Med. 2008;168:847.https://ncbi.nlm.nih.gov/pubmed/18443260.
  • O’Connor CM, Abraham WT, Albert NM, et al. Predictors of mortality after discharge in patients hospitalized with heart failure: an analysis from the Organized Program to Initiate Lifesaving treatment in Hospitalized Patients with Heart Failure (OPTIMIZE-HF). Am Heart J.
  • Boehmer, J et al., A Multisensor Algorithm Predicts Heart Failure Events in Patients With Implanted Devices: Results From the MultiSENSE Study. JACC Heart Failure, 2017;5(3),216-225.
  • Boehmer, J et al., Device Measured Rapid Shallow Breathing Index and Not Minute Ventilation Reflects Changes in Dyspnea Status in Ambulatory Heart Failure Patients [abstract]. At: Heart Failure 2018 & World Congress on Acute Heart Failure 2018; May 26-29;
  • Boehmer, J et al., Device Measured Rapid Shallow Breathing Index Reflects Changing Respiratory Patterns but Minute Ventilation Reflects Changing Activity During Worsening Heart Failure in Ambulatory Patients [abstract]. At: Heart Failure 2018 & World Congress on Acute Heart Failure 2018; May 26-29; Vienna.

Lindenfeld, j et al. Readmissions or Death are More Likely When Device-Derived Rapid Shallow Breathing Index Worsens During Heart Failure Hospitalization [abstract]. At: Heart Failure 2018 & World Congress on Acute Heart Failure

Want to learn more about Heart Failure?

Visit PMTVLive – The Pumping Marvellous Foundations YouTube channel
Visit Heart Failure Aware – The Pumping Marvellous Foundations awareness page

If you need help and you have heart failure or you are a carer of family member with heart failure come and join our marvellous heart failure community on Facebook

To learn about heart failure go to this link

Need patient information – visit this link to our marvellous library

 

Heart Failure Nurse Audit 2018

Heart Failure Nurse Audit Data

Heart Failure Nurse Audit Data

The Pumping Marvellous Foundation has just finished completing the first national audit of the provisioning of heart failure nurse services across the UK.

The Pumping Marvellous Foundation is beginning to release the heart failure nurse audit data to coincide with heart failure awareness week. The Foundation knows that patients and their carers repeatedly tell us about their marvellous heart failure nurse and how important they are. Indeed, the All Party Parliamentary Group inquiry into heart failure in September 2016 raised the significance of the role that is played by the heart failure nurse. At the same time, they acknowledge that there is no national definition of a heart failure specialist nurse, how many nurses there are or where these nurses work, the skills or experience that is required for the role, and just what services teams are offering. The Pumping Marvellous Foundation decided to catalyse the discussion and advocate for heart failure nurses as the patients rated them as the most important member of the heart failure MDT. We also know of the benefit they bring to patient clinical outcomes and the prevention of hospital readmissions. We decided with a hands off educational grant from Boston Scientific, who had the foresight to see our need to design, deliver and disseminate our findings through the Heart Failure Nurse Audit.

Lynda Blue who sits on our clinical team and was the first heart failure specialist nurse in the UK, says

‘It is important in this economic climate with stretched NHS Services that Heart Failure Nurse Specialists audit their role/service on a regular basis to ensure their roles are both sustained and to support a further business case if additional nurses are required for the service. The audit data collected should be able to demonstrate the positive impact the role has on a HF patient’s journey’

Over the coming weeks we will be revealing some of the heart failure nurse audit data to demonstrate the need to invest in, not just heart failure but specifically heart failure nurses.

Later in the month we will be launching our brand new platform which will be available to all stakeholders, especially patients so they can find out where these heart failure nursing teams exist and what services they offer.

Here is the first snapshot of data –

Heart Failure Nurse Audit 2018

Visit PMTVLive – The Pumping Marvellous Foundations YouTube channel
Visit Heart Failure Aware – The Pumping Marvellous Foundations awareness page

If you need help and you have heart failure or you are a carer of family member with heart failure come and join our marvellous heart failure community on Facebook

To learn about heart failure go to this link

Need patient information – visit this link to our marvellous library

Simple £15 Blood Test

Simple £15 Blood Test

Simple £15 Blood Test

A father claims his GP failed to give him a simple £15 blood test which could have saved him from suffering heart failure at the age of 39.

Nick Hartshorne-Evans spent five weeks visiting his doctor with breathlessness and swollen ankles – classic symptoms of the condition – but was sent away with cough medicine and antibiotics but no simple £15 blood test.

It was only when he found himself struggling to walk and he was rushed to A&E that medics discovered his heart was failing, likely as a complication from Swine Flu. The entrepreneur, now 47, has hit out at the “postcode lottery” in testing for levels of a certain protein that are higher than normal when you have heart failure after hearing from scores of patients who had similar experiences but not having experienced this simple £15 blood test.

Heart failure affects at least 900,000 adults in the UK. Campaigners argue the test should be made available to all hospitals and GPs.

Experts say this would speed up diagnosis and save the health service millions of pounds each year. Heart failure accounts for a total of 1 million inpatient bed‑days – 2 per cent of all NHS inpatient bed-days – and 5 per cent of all emergency medical admissions to hospital, according to the National Institute for Health and Clinical Excellence (NICE). Hospital admissions because of the condition are projected to rise by 50 per cent over the next two decades, largely as a result of the ageing population. According to NHS Improvement, testing for brain natriuretic peptide (BNP), which costs from £15-£25, can be used to confirm or rule out heart failure with 98 per cent accuracy and is more useful than an electrocardiogram (ECG). BNP is a hormone released by the heart when the ventricles are stretched. ‘Terrifying’ Yet a survey of cardiac networks by the organisation in 2009 showed that only 46 per cent of PCTs provided such testing for GPs in primary care.

In a recent survey conducted by the Pumping Marvellous Foundation, 22 per cent of areas had no access to natriuretic peptide testing.

Mr Hartshorne-Evans, who set up the charity The Pumping Marvellous Foundation to raise awareness of the issue, said being diagnosed with heart failure so young was “terrifying”. He said: “Those two words really hit you. You feel dazed and confused, I felt like I had done ten rounds with Mohammad Ali. We know that if I’d have had that simple test that I could have been prevented from suffering heart failure.” And while the father to two teenage girls has a good prognosis following an operation in 2013, he is keen to prevent anyone else going through what he has. “I am lucky in that I was fairly young and fit and I had outstanding care after my diagnosis,” he said. “But many won’t be so lucky, especially if they’re older. “We conducted a survey of our members of the charity and out of 170 respondents, 65 per cent had never heard of the BNP test which suggests that they never had it. “Heart failure affects people of so many levels – physically, emotionally and financially. The cost to the NHS is astounding too. Potentially thousands of lives could be saved if there is more access and awareness of this test.”

Read more at: https://inews.co.uk/news/health/exclusive-a-simple-15-blood-test-could-have-saved-me-from-heart-failure-says-father/

Visit PMTVLive – The Pumping Marvellous Foundations YouTube channel
Visit Heart Failure Aware – The Pumping Marvellous Foundations awareness page

If you need help and you have heart failure or you are a carer of family member with heart failure come and join our marvellous heart failure community on Facebook

To learn about heart failure go to this link

Need patient information – visit this link to our marvellous library

Heart Failure Infographic

Heart Failure Infographic

Heart Failure Infographic makes Heart Failure clearer for everyone

Heart failure is a syndrome caused by many different reasons. We have produced this heart failure infographic to help people understand –

  • What it is
  • What are the common symptoms of heart failure
  • What are the common causes of heart failure
  • Some facts and figures around the impact of heart failure
  • Some of the positive steps we can take to make living with heart failure better

The patients tell us what we need to do

The patients in our online communities – our closed community support group on facebook and our heart failure page on facebook told us there appeared to be a lack of good quality understandable information about heart failure in the UK. With their help we developed a list of priorities and showcased them in an heart failure infographic.

You can download the infographic here or open up as a pdf. We encourage you to share this page and help the Pumping Marvellous Foundation build awareness of what heart is, it’s causes and symptoms and it’s impact. Most importantly what we and others should be doing about making lives for heart failure patients better.

If you know someone with heart failure give them a gift and tell them about the Pumping Marvellous Foundation. Telling them about the support available is important.

 

Marvellous Awards 2018 - Heart Failure specialists recognised

Marvellous Awards 2018 – Heart Failure specialists recognised

Marvellous Heart Failure Awards 2018

Heart Failure Health Care Professionals recognised for marvellous quality of care by the UK’s Heart Failure charity. The Pumping Marvellous Foundation awards UK Health Care Professionals for being simply marvellous.

Preston, Lancashire, December 2017 –

Health Care Professionals throughout the UK have been recognised and honoured by patients for their exceptional quality of care and treatment. Sponsored by The Pumping Marvellous Foundation, this award acknowledges the value that these Health Care Professionals bring to the treatment of Heart Failure, improving patient outcomes throughout the UK. Measured by the individual patients’ experience, this award reflects the direct impact these three outstanding Health Care Professionals have in the local community, producing the highest standards of care for their patients.
2018.

The winners are:-

Matthew Sunter – Heart Failure Nurse Specialist – Based at St Georges Hospital in Tooting, London – nominated by heart failure patient Bev Keddo
Dr Kate Gatenby – Cardiologist – Based at Leeds General Infirmary, Leeds, West Yorkshire – nominated by heart failure patient Rich Cleverley
Sarah Mills – Heart Failure Nurse Specialist – Based at Kidderminster Hospital, Kidderminster – nominated by heart failure patient Steve Squire

Cardiac Team of the Year goes to – The Golden Jubilee National Hospital, Clydebank, Scotland – Nominated by heart failure patient Stephen Taylor

As the representative of the UK Heart Failure patients’ voice, The Pumping Marvellous Foundation emphasises the importance of the patient perspective in recognising and rewarding Health Care Professionals.

“We are delighted that our patient community has chosen these heart failure specialists to receive these yearly awards from the charity. It’s so important that patients and their families can work with and operate as a team with their Health Care Professional. A superb achievement and all three of the Health Care Professionals and the team at the Golden Jubilee should be proud of themselves”, explains Nick Hartshorne Evans, Founder and CEO of The Pumping Marvellous Foundation.

Awards are currently being received by Health Care Professionals this week alongside a personalised commendation letter explaining the reasons behind their selection.

“Congratulations to all the winners. We recognise that there are so many fantastic Health Care Professionals out there and to all those who haven’t won, I’d like to take this opportunity to thank you for all your amazing work,” says Angela Graves, Clinical Lead of The Pumping Marvellous Foundation.

Ends – For more information please contact The Pumping Marvellous Foundation +44 (0) 1772 796542 or +44 (0) 7854 407050, hearts@pumpingmarvellous.org

Notes for Editors

The Pumping Marvellous Foundation (PMF) is the UK’s patient led Heart Failure charity. It was founded by a heart failure patient whose experiences whilst rehabilitating have shaped the Foundation’s goals and principles of a patient-centric charity focused on improved patient outcomes.

 

Heart Failure affects 900,000 people in the UK – https://www.nice.org.uk/guidance/cg108/chapter/Introduction

 

Heart failure is debilitating and outcomes are poor: 5 year survival rate is worse than breast or prostate cancer – http://circoutcomes.ahajournals.org/content/circcvoq/early/2010/10/05/CIRCOUTCOMES.110.957571.full.pdf

 

30-40% of those diagnosed with heart failure die within the first year – http://heart.bmj.com/content/83/5/505.long

 

Heart failure is a major cost to the NHS. It is a leading cause of hospital admission in over 65s – https://www.nice.org.uk/guidance/cg187

 

Earlier Access to New Therapies in the NHS

Earlier Access to New Therapies in the NHS

PATIENTS TO GET BREAKTHROUGH TECHNOLOGIES AND TREATMENTS UP TO FOUR YEARS EARLIER THROUGH NEW ACCELERATED ACCESS SCHEME

Does this mean earlier access? – A new, fast-track route into the NHS for “breakthrough” medicines and technologies has been announced by the Government in a bid to dramatically speed up the time it takes for patients to benefit from ground-breaking products for conditions such as cancer, dementia and diabetes.

From April 2018, the new Accelerated Access Pathway will mean selected products with the greatest potential to change lives could be available up to four years earlier by reducing the time taken to negotiate the evaluation and financial approvals necessary before the NHS can purchase them.

Under the scheme, each year a number of products would receive “breakthrough” designation, unlocking a comprehensive package of support that will allow firms to accelerate clinical development and benefit from a fast-track route through the NHS’s approval processes.

Health Minister, Lord O’Shaughnessy, said:

“I want the UK to be the best place in the world to develop new drugs and medical technology – but despite the innovation happening here, our uptake in the NHS can be too slow.

“Today’s new measures will not only benefit patients by improving how quickly and easily we can get innovative products from the lab to the bedside, but will guarantee future collaboration between the life sciences sector and the NHS post-Brexit – benefiting the British economy and creating jobs.”

Sir Andrew Witty, former chief executive of GlaxoSmithKline will lead the Accelerated Access Collaborative, which will make decisions on which products should be granted access to the pathway, drawing on advice from patients, clinicians and industry.

In return, life sciences firms will be expected to deliver additional value for the taxpayer, with a new Strategic Commercial Unit being created within NHS England to help negotiate cost effective deals with innovators.

Sir Andrew Witty, Chair of the Accelerated Access Collaborative, said:

“Patients, scientists and the UK economy will all benefit from the positive steps outlined by the government today.

“The opportunity to ensure the NHS gets rapid access to cost effective breakthrough technologies is vitally important, and I’m delighted to help lead the effort to deliver this.”

UK Bio Industry Association CEO, Steve Bates, said:

“This new fast track pathway should both speed up access for NHS patients to the latest therapies and help to ensure the UK remains a globally attractive cluster in which to start, scale and grow leading life sciences businesses.

“Sir Andrew Witty’s leadership of the Accelerated Access Collaborative means significant industrial insight into the selection process for products able to access this new accelerated route to market.”

The Government is also providing an £86 million funding package to help innovators of all sizes to access the NHS market, and help ensure that these products get to the patients that need them.

This includes:

  • More support for small and medium-sized enterprises to help them build a stronger evidence base for their products, with £35 million over four years to help SMEs with digital products, and a £6 million scheme to support medtech, diagnostics and pharmaceutical products.
  • £6 million to support clinicians to use new treatments and technologies in everyday practice.
  • £39m to encourage grassroots adoption and uptake of new medical technologies, driven by 15 Academic Health Science Networks which are responsible for identifying high potential products, supporting their adoption regionally and sharing lessons across the wider NHS.

A Full Press release by the UK Government in response to the Accelerated Access Review can be found here

The Pumping Marvellous Foundation response

So does this mean earlier access to the latest therapies?

Earlier access through the new Accelerated Access Scheme to innovative therapies seems to demonstrate  a firm commitment to better patient access with the extension of the medical score card system now including medical technologies which is an important area of progressive treatments for people with heart failure.

The area of concern and where this may just be a big sound bite is that it seems –

  • Light on detail
  • Reimbursement models and incentives are not clear
  • How will the Accelerated Access Scheme interact with everyday life in the health system especially with the remodelling throughout the system

These are fundamental questions that need to be answered before the scheme becomes real.

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.

Collaboration

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