Remembering Oliver Lewington
Oli was a talented professional, a passionate community advocate and a kind and caring man. He made a vital contribution to an enormous range of activity that helped to change thousands of lives.
David Ramsden, Chief Executive of Cystic Fibrosis Trust
Emma Lake, who has CF and is Community Communications Project Manager at Cystic Fibrosis Trust, shares her memories of working with Oli.
Oli joined the Trust aged 21, working as a Patient Advocate for the South East, joining the same day as me. Oli and I, a mere month apart in age, joined the Trust in October 2003, when thanks to funding by the National Lottery Fund, they were able to expand their patient advocate service. We were part of a team of 13 people with cystic fibrosis who worked with the CF community, the CF care teams and the NHS to help improve quality and access to services
I was lucky enough to share my patch with Oli during his original time at the Trust and together we managed to see some real positive and meaningful changes for our community.
While waiting for his transplant he was a passionate campaigner for organ donation and as well as becoming a founding Trustee of the charity Live Life Give Life. He also continued to support the work of the Trust, becoming a prominent and respected speaker at events.
He also became one of our official Ambassadors. As part of that role we , along with some other amazing people living with cystic fibrosis were lucky enough to be able to represent the Trust during our 45th Anniversary Reception at St James Palace.
I remember being jealous of Oli as he got to swan about in the throne room and I was much further down the pecking order! However, we did manage a cheeky wave every now and again, even with the strict cross infection protocols in place.
When the Trust relaunched CF Talk, a magazine for adults, Oli was keen to be involved. Again, we ended up teaming up for the first issue which was themed around sex and relationships.
We wrote a joint piece examining how difficult it can be to feel sexy when you have a condition like cystic fibrosis and looking at how that can be different depending on your gender. I might be biased, but it was clearly the best thing in it, and we did have a giggle that the Trust was posting out an adult magazine with the word sex all over it.
After he received his life-saving transplant in 2007, Oli eventually became the editor of CF Talk and issues were produced around a range of topics such as food, exercise, nutrition, music – all written and put together by adults with CF.
He had continued to be a supportive (and hilarious) friend and I think I had begun to believe he was invincible, due to how long ago he had his transplant and how many other friends and colleagues had passed away in that time. It can be tough to be one of the ones left behind and I think he understood that better than most. It still surprises me even after all this time how much you can miss people you never met. I think this reflects how close the CF community can be and the strength of Oli’s place in it.
Emma Lake
When Oli rejoined the Trust in 2014, he worked as Director of Marketing and Communications, sitting on the Senior Leadership Team. He was a talented professional and a passionate community advocate.
Oli worked here until 2020 and made a vital contribution to an enormous range of activity, including the move from Bromley to Aldgate, and played a central role in establishing the Access to Medicines campaign.
It was a joy (most of the time) to be able to work closely with my friend again, and to be able to join forces on so many projects that are still impacting and improving not just the work of the Trust, but our whole community.
He was a key driving force behind the Life Unlimited, Our Enough is Enough campaign to improve access to dedicated inpatient facilities, and the development of our current forum.
I’ll always remember him as being happiest when he was writing and creating: “I think that is why we got on so well, that is my happy place too. Unlike Oli I haven’t managed to write and publish my memoirs yet, but behind the scenes our team got to contribute to scripts on storylines in the media including Casualty and Eastenders and help authors such as Jill Mansell and Alice Peterson portray the realities of CF in their fictional accounts.
Everyone who worked with Oli knew him as a kind and caring man who did so much for everyone affected by cystic fibrosis. Our thoughts are with his wife, family and friends.