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Cornwall respiratory patient champions research legacy

A FALMOUTH woman hopes her commitment to taking part in research into the treatment of a chronic lung condition will be her legacy for future patients. 

Ann Bennett has Idiopathic Pulmonary Fibrosis (IPF), which scars the lungs and reduces the efficiency of breathing. The build-up of scar tissue called fibrosis causes the lungs to stiffen and lose their elasticity so they are less able to inflate and take oxygen from the air breathed. The British Lung Foundation says about 6,000 people are diagnosed with this progressive condition every year in the UK.

Ann’s symptoms developed over a six year period from a cough to increasingly becoming breathless even when walking around in her bungalow home. A CT scan in 2014 confirmed a diagnosis of IPF.

Ann says: “The diagnosis of IPF was devastating as the only treatment I was offered was oxygen. As well as being concerned about the deterioration in my own health, I was also very worried about the impact on my role as a carer for my husband Peter.

“As I became more breathless I was unable to continue my active lifestyle until I was assessed for oxygen therapy. My general health is fine but I have to factor in how I can continue to receive the oxygen when I am out and about and I am more vulnerable to coughs, colds and infections.

“In 2015 I was offered medication to try to slow down the progress of IPF but this treatment involved travelling to London every 12 weeks with at least one overnight stay and it became more difficult to manage when my husband needed me to look after him.”

Ann’s care was transferred from the Royal Brompton hospital to the Royal Devon & Exeter hospital. In early 2016 respiratory consultant Dr Michael Gibbons offered Ann the opportunity to participate in a clinical research trial. She didn’t hesitate in accepting: “I had nothing to lose and so much to gain whether I was receiving the actual drug being trialled or the placebo because I am closely monitored every three months for any changes in my condition.”

Retired Chartered Physiotherapist Ann added: “I feel it is very important to explore all the avenues in the search for a cure for IPF. At present there is only medication available which might slow down the damage caused by this disease but there is no cure. I consider taking part in research to improve treatments my legacy for patients in the future.

“I feel privileged to be part of a research study and being part of scientific progress which may benefit me and other people. I don’t know whether I am receiving the drug or placebo (dummy version) but I have felt my health has improved. Within five weeks of being on the study, my cough had improved and people commented on how well I look. I am reassured by the regular and thorough check ups and respiratory tests I have done.”

Although Ann no longer has to make the arduous journey to the capital city for treatment, she does travel from her home in Falmouth to Exeter to participate in this research trial.

She says she couldn’t do this without a lot of advance planning to ensure her husband is cared for in her absence and the support of her family.

Back in Cornwall her research participation commitment takes pretty much a whole morning once a week when a nurse, engaged by the pharmaceutical company leading the trial, visits her at home to administer an injection and observe Ann afterwards. Ann also liaises with the Royal Devon & Exeter hospital regarding the delivery by courier of drugs and storage of her medicines.

A passionate advocate for supporting clinical research Ann said: “Medical advancement cannot take place without research and clinical research is an essential part of this. There will be no cure for many conditions without trials; trials cannot take place without volunteer patients and the funding to support the research. A cure will be found for IPF but the road to success is slow and needs many willing volunteers to make progress.”

In 2016/17, twenty respiratory studies on the National Institute for Health Research (NIHR) portfolio were conducted by acute hospital trusts and GP practices across Somerset, Devon, Cornwall and the Isles of Scilly.

The Royal Devon & Exeter NHS Foundation Trust conducted seven of the 20 respiratory studies with 48 participants out of the total 272 recruited across the NIHR Clinical Research Network South West Peninsula (Devon, Somerset, Cornwall and the Isles of Scilly).

RD&E Respiratory Consultant Dr Michael Gibbons said: “Patient participants are an essential partner in health research. We cannot thank patients like Ann enough for giving their time to research and placing their trust in us as we seek to get a better understanding of conditions and how best to treat them.”

Dr Gibbons, who is the NIHR Clinical Research Network South West Peninsula Clinical Research Speciality Lead for respiratory disorders, added: “Respiratory conditions, like Idiopathic Pulmonary Fibrosis, can require more effort to carry out everyday tasks so we do not underestimate the determination and commitment patients make when they travel and take part in research studies. It is a privilege to work with patients like Ann who generously support research to benefit future generations.”

Ann says since diagnosis she has learned a lot more about IPF and has become an active campaigner for people with this condition. In 2015 she was invited to be part of a British Lung Foundation parliamentary awareness campaign group which lobbied Westminster. She has shared her experience of living with IPF with talks to professional healthcare staff and lay public audiences and through a blog about the things people living with lung conditions would like everyone to know.

Currently Ann and her husband are representatives on the British Lung Foundation South West forum for Devon and Cornwall and they play an active part in a local social and exercise support group called Breathe Falmouth.

The Clinical Research Network in the South West is celebrating International Clinical Trials Day on May 20, 2017 with activities and public engagement events in hospitals, GP practices and community healthcare settings to raise awareness about the benefits and opportunities for taking part in and supporting health research.

To find out more about getting involved in research visit: www.iamresearch.co.uk and to find out what clinical research is taking place in your area: www.ukctg.nihr.ac.uk