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Launching my area's Strategic Clinical Network

John is making sure people with lung conditions have their voice heard.

I’m 65 now, and was diagnosed with COPD about 10 years ago. From an early age – and I mean really early – I was a persistent smoker. I was really cool and didn’t have a care in the world. I could always stop if I wanted to, no problem – or so I thought at the time.

Like millions of others I was hooked. I couldn’t stop. Years later I knew I absolutely had to stop, for my family’s sake. It was really affecting my relationship with my wife, my children found me unbearable to be around because of the smell, and I had started buying cigarettes instead of paying the bills.

I knew it had to stop

I realised I was so selfish and, on reflection, I was a horrible person to be with. My family is the most important thing in the world to me, I really don't know how I could go on without them.

One of my children now lives in China and we used to go over to visit him two or three times a year - but now, because of my condition, I can’t go over anymore. It’s heart-breaking. I spent thousands of pounds trying to find a cure for my habit.

Eventually I found an NHS stop smoking service nearby and received excellent support. I managed to quit because of them. I was so grateful that I felt I needed to give something back, so I told them that I wanted to help in any way I could.

They welcomed me with open arms and I was soon going round the hospital wards talking to people who wanted help to quit. Sadly it was brought to an end by politics and the stop smoking service was disbanded. Can you believe it? I certainly couldn't – and it only made me even more determined to help as many people as possible get the support they deserve.

Our local Breathe Easy support group

One day, completely out of the blue, I was contacted by Claire from the British Lung Foundation, who asked if I’d be interested in forming a local support group for people with lung conditions. Of course, I was more than happy to go along.

At the first meeting I met others in a similar situation to my own, and a fledgling Breathe Easy group was formed. A few months later we had our official launch and we were on our way. I now chair the group and we work as closely as possible with local health care professionals. We need them to help us spread the word about the group and how we can help. They also come along to talk at our meetings. They help us, and we help them – everybody wins.

Through Breathe Easy, I was able to join our area’s respiratory network as a patient representative. When asked, I was very humbled, but knew I could make a significant contribution. It allows me to put forward the views of the group to the people that matter and make sure our voices are heard.

It’s all very new to me, especially the medical jargon, but it’s a fascinating insight into how our local top health professionals are shaping the future of health care for people with lung conditions and how passionate they are about this vital work. I really do feel so privileged.

Launching the Strategic Clinical Network

And then earlier this year I was asked to get involved in the Strategic Clinical Network (I’ll just call it SCN from now on) that we’ve just launched. Its aim is to bring together everybody involved in respiratory health care – from the people already living with a condition or at risk of developing one, all the way up to the NHS’s ‘top dogs’ – to make sure the services are the very best they can be.

The SCN for respiratory in my area came about after some re-organisation at the NHS. Unexpectedly, I was invited to chair the launch. Daunting! It was somewhat out of my usual comfort zone but I saw it as an opportunity to fly the flag for our Breathe Easy group as well as the BLF, so I grabbed it with both hands and accepted the invitation.

The launch was a great success and attended by more than 100 people. We had a really varied selection of speakers. Every one of the audience listened with great interest and lots of them engaged in the fascinating question and answer sessions that took place after each speaker’s presentation. I am very humbled and incredibly proud to be associated with the launch of a network that will – I am absolutely sure – change lives for the better and give them greater hope of a healthier future, not just for themselves but also for their children and future generations to come.

All those years ago, I was hurt by the internal politics that ended the stop smoking service. I think that has really helped motivate me to make a difference and ensure nothing like that can ever happen again. I hope that the SCN will help us achieve a more joined up respiratory health service in every respect and from every angle, and that it will be such a success that it can be replicated elsewhere in the country.

The BLF fights to make sure people with lung conditions get the best care possible. If you can spare a couple of pounds to make a donation today, you can make a big difference.

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5 August 2014