Pumping Marvellous

Our Heart Failure patient toolkit is the most comprehensive patient self care programme for Heart Failure patients. Where your journey starts at A&E or even your GP through to maybe acute and then into community care, the toolkit is a guide for not only you but also your carer and family as to how to manage your new life and opportunities. Throughout the world we see different methods of engagement with patients from clinicians engaging with patients through a checklist to handing out books to read.

The difference between our toolkit and others is this -

• It is authored and put together by a Heart Failure patients experiences
• Subject matter is from patient and carer inputs from all over the world
• Specialist charities and organisations have written there own sections
• Clinicians from the NHS Trusts have provided the technical data
• Companies specialism in heart failure treatments have lent their hand
• It is geographically transferable
• It is attractive and engaging for patients
• It is digitally available to specialist heart failure nurses along with a suite of APPs for tablets therefore enriching the patient experience and self learning.

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

Where it all began in 2010

Heart Failure Chairty Winners

A need for Pumping Marvellous was identified by heart failure patient Nick Hartshorne-Evans in February 2010 to quickly address support and care of a non clinical nature after initial diagnosis for heart failure patients in the East Lancs area.

As of yet we have not found any support function like Pumping Marvellous outside the clinical element of treatment for Heart Failure. There seems to be support functions for cardio care and education in general and for heart attacks but not for the broad range of clinical conditions that sit under the umbrella of heart failure.

As you may be aware there are various levels of “heart failure” but what every patient needs who has a lifelong chronic condition is support and a friendly arm. However its effectiveness goes deeper than that as Pumping Marvellous is designed to create expert patients and if the patient is either too unwell or in denial then it will create expert carers. It will achieve this through its website, blog forums, webinars and most importantly patient participation.

We will aim for Pumping Marvellous to be a staple part of every heart failure patients extra curricula care in the East Lancs area by the start of January 2012. Already Pumping Marvellous since its birth in July 2010 has over 200 articles on the blog that are designed to inform and help both patients and carers. This number is being added to every week therefore it is up to date, relevant and pertinent to the patient’s condition. It is a wealth of resource for heart failure patients to challenge their current situation creating positive situational outcomes and wellbeing.

It has allowed the founder of Pumping Marvellous to manage his condition.

Pumping Marvellous also launched its new site Pumpingmarvellous.org which moves away from the Patient Blog site. Therefore we are represented 2 times on the web. Pumpingmarvellous.com which is our patient blog and Pumpingmarvellous.org which is a more informative site around Heart Failure and Heart Health.

Patients of the East Lancashire Primary Care Trust also regularly input into Pumping Marvellous so it should give you a relaxed and informative read.

Although we work alongside and help patients who are being cared for by the NHS East Lancashire Hospital Trust and occasionaly ask their opinion on our work they have no liability as to the information that is posted on this website and that includes any comments by clinical staff as well. The posts and commentary are our opinions and we have the final say as to whether articles are published or not. You must always consult your clinician before you alter your treatment.

Our current Board of Trustees

Nick Hartshorne-Evans

Natasha Hanson

Mark Hargreaves

Jonathan Evans

Andrew Evans

Caroline Terry

Our Current Writers and guest bloggers

Nick Hartshorne-Evans (Editor)

Andy Evans (Sub Editor)

Beth Baron – Cardiac Practioner

Kate Reid – Health Improvement Specialist

Angela Graves – Heart Failure Nurse

AF Association

Northerm Dragons – Tai Chi

We have no affliation with any NHS Trust and the views and opinions are of the writers and Pumping Marvellous.

Registered Charity No 1145140

Image via Wikipedia

Flu Jab

You must be sick and tired of us reminding you but it is very important that you make an appointment to see a Nurse to get your seasonal flu jab. Flu of any type can be very dangerous for people with Heart Failure therefore it is important to protect yourself.  You can also now go to your Local Pharmacy and pay for a Flu Jab. I was in Asda this morning and customers were queuing for their Flu Jabs.

Also make sure that when you see your clinician they have had one to. Believe it or not but some NHS Trusts in the UK only have a 10% uptake, the average is 26% of the seasonal flu jab by members of the Trust which we think is pretty disgraceful considering the “At Risk” patients they work with. So ask the question!

Nearly time to protect against seasonal flu

Over the next few months it’s the time for Heart Failure patients to get that all important flu jab. An extra two million flu vaccines have been ordered and an emergency “shot-pile”
is being set up as health officials prepare for the flu season.

Last year, 14.7 million shots were ordered. For this winter 16.7 million have been ordered and 400,000 will be kept in reserve.

For the second year running there will be no advertising campaign in England to raise awareness, unlike in Scotland and Northern Ireland. Chief Medical Officer Pro Dame Sally Davies questioned the usefulness of adverts, saying people “listen to trusted sources, not government”. She is instead relying on health workers, charities and pharmacies to target those at risk. Bags of medicine from the pharmacist will carry messages encouraging people to have the jab as “patients in at risk groups are taking medicines,” she  said. Last winter more than 600 people in the UK died as a direct result of catching flu.

The vaccine itself, based on advice from the World Health Organization, will again protect against swine flu (H1N1) as well as the H3N2 and Flu B strains.

These are the same three viruses as last winter, but the government’s director of immunisation, Prof David Salisbury, warned patients they would be gambling if they were not immunised again this year.He warned there was no evidence that last year’s shot would still offer protection and that “it’s playing high risk stakes thinking you’re protected”.

Prof Davies again criticised healthcare workers who did not get vaccinated, saying they were “selfish” for not protecting their patients. Last year 35% were vaccinated, up from 26% the year before.

Prof Salisbury said there had been renewed attempts to “persuade, influence and cajole employees”, but there also needed to be improvements within hospitals to make it easier for staff to get vaccinated. He said that at Birmingham Children’s Hospital Foundation NHS Trust, 95% of front-line staff had had the seasonal flu jab, but that figure was as low as 10% in other areas.

So the messsage here is to get vaccinated yourself but ask your Doctor or Nurse if they have been vaccinated and if not why?