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.
Gene Therapy for UK Heart Failure Patients
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.”
and if Carlsberg made patient waiting rooms…
We are pleased to announce that if you like reading or would like to give a perfect present then visit the Royal Blackburn Cardiology Out Patients Department for a selection of superb books by famous authors including Tom Clancy, Lee Childs, John Grisham, Michael Connolly, Stephen Brown and David Baldacci to name a few.
All I can say is a very generous man called Russ who lives near Ewood Park has donated over 200 books to the charity. Now these aren’t tatty books these are hardback books with covers and are in perfect condition and we mean perfect.
If you bought all these books from Amazon or a book shop you would be looking to pay at least £2800.
Questions about Digoxin
We think it would be prudent to get a balanced report on the latest on Digoxin and it’s links to Deaths with people with Atrial Fibrillation which is a heart rhythm condition as these reports tend to have a habit of spreading like a wild fire and by the time you hear of it the message has been put on the grapevine and the real messages have fallen off the cliff!
The study, which was published online in the European Heart Journal on Nov. 27, 2012, showed that patients who took digoxin who had atrial fibrillation (AF) died in significant numbers whilst on the medication.
Digoxin is made from an extract from the foxglove plant used on patients who have AF and heart failure. Theoretically, it makes the heart beat stronger and more regularly. It is notoriously hard to use because there is a narrow dose range between where it is helpful and when it can cause harm. High doses have been seen to increase death in patients.
For the study, researchers looked at data from 4,060 AF patients who took digoxin before or during the 3.5 year study. The subjects had all enrolled in the Atrial Fibrillation Follow-up Investigation of Rhythm Management (AFFIRM) to determine any affects digoxin had on increased death rates.
Digoxin was associated with a 41% increase in deaths from any cause, after controlling for other factors. Patients who took digoxin also had a 35 percent increase in deaths from cardiovascular causes, and a 61 percent increase in deaths from arrhythmias, or problems with heart rate.
“These results mean that among AF patients taking digoxin compared to those not on digoxin in the AFFIRM trial, within five years one additional patient out of six will die from any cause, one additional patient out of eight will die from cardiovascular causes, and one additional patient out of 16 will die from arrhythmias,” Samy Claude Elayi, associate professor of medicine at the Gill Heart Institute, University of Kentucky, in Lexington said in a press release.
Elayi added that the results show that widespread use of dioxin may be detrimental to patients who are suffering from AF. However, the findings do not show that the medication is bad for everyone he pointed out to Reuters.
“But in patients that have no heart failure and (have) atrial fibrillation, I think there is no reason to use this drug as a first line,” Elayi said.
Dr. Ali Ahmed, who has studied digoxin at the University of Alabama at Birmingham, told Reuters in a later statement that the study was flawed because it was looking for problems caused by digoxin and did not assign people blindly to the study. He said other “…other patient diseases may have caused the deaths.
“This should be taken with extreme caution, because of the potential for confounding and bias from a variety of sources,” Ahmed, who wasn’t involved in the new research, said.
Natasha Stewart, senior cardiac nurse at the British Heart Foundation (BHF), added to the BBC that while digoxin isn’t the first medication of choice in the U.K., some patients are taking it — and there are plenty of benefits for AF and heart failure patients.
“Before we jump to any conclusions about the dangers of the drug, we’d need to see further research into what might be causing these increased risks,” she said. “Patients who are prescribed digoxin should not stop taking their meds without discussing their concerns with their doctor.”
I think the last statement says it all really and it is important that if you are concerned that you should discuss your concerns with your Doctor or Heart Failure Nurse and not change your medication in anyway unless directed to do so.
Nick our Founder and heart failure patient himself was invited to speak at the North West Heart Failure Nurses Conference in front of 50 representatives from the NHS Northwest region on the 21/11/2012. He was asked to speak about self care in heart failure patients and the new patient system of self care that has been devised by the charity – “The Toolkit”. The Toolkit has been developed by patients, carers, clinicians, rehabilitation practitioners, charities and organisations who have a stake in heart failure. The Toolkit is written in patient speak so it is easy to understand and is not overly technical like the majority of literature that is given to patients.
The toolkit was funded by the NHS North West and is a pilot case that is currently running in the East Lancashire area. On the day we polled the heart failure clinicians on how they thought their patients would want to change the way they were cared for. We managed to get significant valuable feedback that we will be using in later versions.
We are always pleased to be given the opportunity to talk about how patients perceive and would want to change the way they interact with their own care as this is the way change is brought about.
Evidence is gathering that cardiac rehabilitation is a significant factor in the stabilisation of heart failure and unfortunately there are many of us who aren’t good at it. That includes patients, the NHS, local government and other health providers. There is no magic wand to this so we decided to help with producing a booklet that helps facilitate physical movement leading onto exercise. The booklet alone won’t do the work but it will highlight the wide variety of programmes and courses available to Heart Failure patients in the East Lancashire area where people get accustomed to the fact that exercise doesn’t have to mean the GYM; it is social interaction, it’s about having a laugh and a joke and who could think of anything better than that as well as being good for you!
We really wish we had the resources to pull this together for all Heart Failure patients but we don’t, however we are unsure what the future holds so we will have to wait and see.
Co-operative Funeralcare leading the way
The Co-operative Funeralcare has just had an excellent couple of days raising money for our “Mirrens Campaign”. They have raised around £4000 so that we can get badly needed AED’s into schools so we thank you and raise our hat to you. Let’s hope we can influence other businesses to donate £1200 for an AED to their local schools through your lead and of course the training is free…