IN 2010 Hapton dad-of-two Nick Hartshorne-Evans was diagnosed with heart failure at just 39 after suffering a rare viral infection.
Feeling there was a lack of help available for patients with the condition, Nick decided to set up a patient support network, Pumping Marvellous.
Four years down the line, and what started as a small support group has turned into an national charity, helping patients deal with the day-to-day problems caused by living with heart failure.
The group became a registered charity in December 2011 and started working alongside the NHS to help support East Lancashire patients with the condition.
In 2013 the charity launched a ‘tool kit’ for patients leaving the hospital after heart failure diagnosis.
The kits, which were created alongside East Lancashire Hospitals Trust, Burnley Healthy Lifestyles Team, The Cardiomyopathy Association and other medical bodies, are currently under trial.
They include information about the charity as well as guides to the drugs and medical devices, smoking cessation and alcohol management, information for carers, and how make sure someone gets the benefits they’re entitled to.
Nick, 43, said: “We started out by speaking to patients and seeing what they felt was important. The tool kit was a new concept which aims to help patients educate themselves and learn about their condition and manage their symptoms.
“Its about equipping patients who have been newly diagnosed with information so they can self manage their condition by learning from others experience.”
Since 2011 the charity has been fundraising for 40 defibrilators to be installed across the North West. Last year, 10 defibrillators were purchased with £10,000 of funding from the Gannett Foundation, the charitable arm of Gannett Co Inc, owner of Newsquest Media Group, whose titles include the Lancashire Telegraph.
The defibrilators have been put in schools and other community buildings. They have also bought iPads to be used to help the heart assessment teams quickly identify patients who are suitable for specialist surgery or therapy.
Nick says Pumping Marvellous now hopes to increase its profile across the UK to increase awareness of heart failure.
He said: “We now have around 20 patient educators across the country who will give advice to other suffers, as well as running support groups in Yorkshire, the South West, West Midlands, London and the North West.
“We are hoping to launch our new website soon to better spread awareness of heart failure.”
For details about the charity visit www.pumpingmarvellous.com