Tom Ross was appointed a Trustee in 1997, became Chairman in 2001 and retired from the Board in February 2020. Here he reflects on CLDF’s achievements over his time as a Trustee, and on the challenges and opportunities for CLDF in years to come.
I first became involved with CLDF purely by chance. I had known my predecessor as Chairman of the Trustee Board, David Bullough, through business for several years but after he retired from his company, we lost touch. Then, in 1997, we bumped into each other at Marylebone station and travelled out to Amersham together. As well as much catching up, David shrewdly sowed a seed by suggesting that, now that I was well into the second half of my professional life, it was time that I thought about “putting something back” by becoming involved in the voluntary sector. And as it so happened, he was Chairman of the Trustees of a children’s charity, CLDF, which I had never heard of, but which was looking to appoint another Trustee. The rest, as they say, is history!
The Trustee’s role is an important and responsible one. It boils down to three things. First, providing input into the strategic direction of the organisation. For example, in CLDF’s case, striking the balance between its key activities of family support, information and education, and research funding, taking account of trends in things like the use of technology and the improving survival prospects of children with liver conditions (the latter being, for me, the most remarkable and positive evidence of progress during my time as a Trustee). Second, being a support and sounding board for the Chief Executive and her team as they run the organisation from day to day. A good example of that is help with fundraising. And thirdly, providing independent oversight to ensure that the Charity is being run in accordance with its charitable and strategic objectives.
To do its job effectively, the Trustee Board needs to have members with a wide variety of backgrounds and experience. That includes people with backgrounds in, among others, medicine, social care, business and finance, technology, communications, and, very importantly, families who have used the Charity’s services. The relationship between the Chairman and the Chief Executive is particularly important – collaborative, supportive, trusting, but not too cosy! I was very fortunate that, in my time as Chairman, I worked with two outstanding Chief Executives, Catherine Arkley and Alison Taylor. Different characters of course, but they share an absolute commitment to the CLDF cause. I would pay tribute too to my fellow Trustees and medical advisers over the years who have given freely of their time and expertise in support of CLDF.
Above all else, CLDF is there for children and families at their time of greatest need, and families play a major part in raising the funds that enable the Charity to carry out its work. These vital efforts have been complemented by two headline events introduced during my time as Chairman. Big Yellow Friday in early March each year provides a focus for families, schools, workplaces and so on to organise local fun events that not only raise much needed funds but also give friends, colleagues and organisations the opportunity to come closer together in support of a good cause. The biennial Chefs’ Gala Dinner, also usually in March every other year, by contrast is a glittering fund raising dinner supported by an array of household name chefs, which has been a great success since it was first held in the Savoy hotel in London in 2001. It is a great shame that the 2021 editions of both these events have fallen victim to the Covid pandemic, but I am sure that they will return and enjoy further success when the pandemic is behind us.
Tom with his fellow trustees at the CLDF Chefs’ Gala Dinner in 2019
Perhaps the biggest, and certainly most pleasing, change in CLDF’s work in the past 20 years has been the increasing emphasis on providing support to children (and their families) as they progress from childhood to being young adults with exciting futures ahead of them. It is a tribute to many people, professionals and others, that the life chances of babies and children with liver conditions are today far better than they were 20 years ago. CLDF has played an important part in that success through its support of research, its championing of early diagnosis and its advocacy with the health authorities of the case for directing scarce resources to what is, in reality, a series of comparatively rare conditions. It is not possible to say exactly how big a part CLDF played, but regardless of that, it is an outcome of which everyone connected with the Charity can be proud.
Finally, what about the future? The last 12 months have been difficult and traumatic for everyone, and CLDF has been no exception. But the Charity has demonstrated over its 40 year history that its services are vital for children and families and that it is very resilient when times are difficult.
I would expect that support and information to families and young people will continue to be central to what CLDF does. How that is delivered, however, is going to change in an ever more digital world. Of course, this is already happening, spurred on by the constraints imposed by the pandemic, and I can see that trend accelerating. As far as the lives of children and young people are concerned, the emphasis in research and service delivery is likely to gravitate more towards improving the quality of life through continuous improvements in diagnosis and treatment of all liver conditions. Funding research is expensive, and a key challenge for CLDF will continue to be how to use limited funds for research as effectively as possible. Inspiring young researchers to become involved in CLDF’s specialised areas through PhD awards has been successful and it is to be hoped that these awards can continue. Collaborating with other charities in related fields and with relevant grant giving organisations might be a good way to become involved with larger research projects.
What many families would like to be discovered are the causes of liver diseases in childhood so that, ultimately, the focus moves from treatment to prevention. It would be wonderful if, with the amazing advances in medical research, that aspiration could become a reality well within the next 40 years in the life of our remarkable Charity.