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Stories from June, 2013


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Join The Breathtember Challenge this September

September is Breathtember – Pulmonary Fibrosis Awareness Month

 Get out of Breath for Breathtember

Tweet Tweet!

To help raise awareness, we would ask that supporters tweet different challenges each day in September including the term ‘#Breathtember’ and to ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath could mean:

The important thing is that you tweet your challenge every day including the term ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  This September, we want as many people as possible to see the term ‘#Breathtember’.  To make the biggest impact, the aim is to get the term ‘#Breathtember’ to trend. 

Register on the Breathing Matters website for further details:








Charity Bike Ride 9th June 2013

Everyone came out in force on Sunday for the fourth annual UCLH Charity Bike Ride. This year’s event was the most successful yet with more cyclists supporting more UCLH funds than ever before.

Almost 100 riders cycled seven miles around beautiful Richmond Park on Sunday 9th June 2013 in support of five UCLH Charity funds; Breathing Matters, Dementia Care, Leukaemia and Lymphoma Unit, Rays of Hope and TTP Research.

 Cyclists included patients, relatives, doctors, researchers and families with children as young as four years old – and quite a few dogs, wearing our lovely purple T-shirts! [Dexter photo]  The sense of community was enhanced by the growing numbers of UCLH staff who joined us this year. 

It looks as if Bradley Wiggins also joined us … or was it Elvis Presley!

Thank you to Jonathan Edwards for providing a cycle maintenance point and to Cadbury’s for donating chocolate, both gratefully received!

We are once again very grateful to our fabulous volunteers including a few mum and dads, without whose help this event could not have taken place.  We are indebted to you all.

Over £3,500 has been raised so far for this event for Breathing Matters.

Look out for the 2014 date!

A Patient’s Experience of Helping Doctors

By John Hayward 

My name is John Hayward and I have had Pulmonary Hypertension for about twelve years now.  Recently, I have been well enough to attend PasTest courses for qualified doctors.  I am viewed as an interesting case, so I go along to be examined by the doctors, who then present their diagnosis to a senior registrar or consultant. 

Founded in 1972, PasTest offers a study scheme that helps doctors to pass the Royal College of Physicians MRCP2 examination.  Around 8,000 doctors have used PasTest and their exam success rate is 68%. 

A typical day starts at 8.30am with tea or coffee and biscuits and by 9.00am the course starts.  Several patients are examined by doctors, who have five minutes to complete their examination.  After they have examined all the patients, the group will visit each patient with the consultant to discuss their diagnosis and highlight something that was maybe overlooked or where there might be a better approach to the examination.  Naturally, they are respectful of patient confidentiality and comply with the Data Protection Act. 

There is a mid-morning coffee break and an hour for lunch plus another break in the afternoon.  The courses finish at 4.45pm.  The patients are paid £45 per day and all travel expenses are paid.  Some patients will arrive by taxis arranged for them by the company. 

Everyone really appreciates the effort of patients to attend and you are made very welcome.  I find it enjoyable and, as Pulmonary Hypertension is a rare disease, it gives doctors the opportunity they might otherwise not have to examine a PH patient and also, of course, it helps to spread the word about Pulmonary Hypertension.

Currently, PasTest is looking for patients to attend courses in North and Central London.  Courses run in January, May and August. 

For further details regarding PasTest courses, please contact: Wendy Slinger, Operations Co-ordinator, PasTest Ltd, Egerton Court, Parkgate Industrial Estate, Knutsford.  WA16 8DX. Tel:  01565 752016