We interviewed Professor Ian Lewis, one of the founding trustees of the Bone Cancer Research Trust. Now retired, Professor Lewis reflects on some of the challenges the charity faced back in 2006 and why the success of the Bone Cancer Research Trust is built on trust, collaboration and putting patients and their families at the centre of the charity’s existence.

How was the charity formed?

The Bone Cancer Research Trust was originally born because parents of children that had died of bone cancer had a deep desire to try and do something that would prevent other families having the same awful experiences. Each of the originally very small number of families had raised funds with the aim of wanting to support research that could lead to better survival, but they were all struggling to find anywhere to achieve this. I became involved at the start because I happened to be chairing the National Bone Cancer Group and two of the families contacted me independently to ask the same question ‘where can we most usefully put our money?’. Between us we knew of several other families with similar aims and in September 2004 we held the first ever meeting of these families. What the families immediately recognised was the strength they could achieve if they grouped together and pooled their resources. Over the next year the group met every couple of months, we were joined by additional families and agreed that the best way forward was to create a charity that had two very clear aims - firstly to promote and support research into the causes and treatment of primary bone cancer, and secondly to provide counselling, support and information for patients and their families.

What were the challenges patients and their families faced before 2006?

Bone cancer is rare and those affected by it and their families are launched into a place they have no desire to be and with little understanding of what they are about to face. The strange and unfamiliar medical world of hospitals, difficult and stressful treatment, and having to face the possibility of disability or death can shock or disrupt the most stable of individuals and families even with the support of expert and empathetic clinical teams. It can be, and usually is a very lonely place but one of the most important things that came with the formation of the Bone Cancer Research Trust in 2006 was a place that patients and their families could be signposted to, hopefully where they felt less alone and where they could find others who had comparable experiences and an independent source of helpful and reliable information.

What were the challenges in the early days?

There were lots of challenges; becoming recognised as a reliable source of research funding and accurate and trusted information, being accessible to patients and families and developing a national (and then hopefully international) community who shared the overall aims of improving outcomes for primary bone cancer through research and collaboration.

What were some of the goals you wanted the charity to achieve?

What we really wanted to see was more patients surviving bone cancer with less disability. There were some factors that we identified at a very early stage that would be key to improving survival and treatment, such as to try and lessen the time it takes to diagnose bone cancer. There have now been many initiatives and campaigns over the last 15 years trying to improve awareness of bone cancer with professionals and the public with the aim of enabling earlier diagnosis. Also, the need for scientists to have access to bone cancer tissue from patients if we were to improve our understanding of the different forms of bone cancer and to test out possible new treatment approaches. Before the Bone Cancer Research Trust was formed there was no clear path or system for clinical teams to ask patients if they would agree for their bone tumours to be used in research. The Bone Cancer Research Trust’s Infrastructure Grants are a game changer and the work to link clinical centres with researchers will continue to be key to achieving the charity’s aims.

The Bone Cancer Research Trust is now the leading charity dedicated to fighting primary bone cancer, how does that make you feel?

I have enormous pride that I was able to contribute to the Bone Cancer Research Trust and by what was achieved as we took off and started to fly. We only did that because the charity was built on collaboration, trust, and holding fast to a set of values that puts patients and their families at the centre of our existence.

I have immense admiration and gratitude for my colleagues and friends who have been trustees, members of staff and supporters who have built the Bone Cancer Research Trust into the foremost charity dedicated to primary bone cancer. I look at the fundraising efforts that seem to be incredible, particularly given the challenging year we have been through. I look at the range and scope of the research the charity is now funding and how far the Bone Cancer Research Trust has come. I look at the information and various campaigns and how many desperate people are now being helped – it is wonderful!

Is there a message you would like to send to our supporters both new and old?

Everyone’s contribution is really valued and important but there is still much to do before every person who is newly diagnosed with bone cancer is treated successfully. Until that happens the need for the Bone Cancer Research Trust to exist continues and so the work must go on.