Our CEO, Rebecca Wood, joined Tom’s Trust in 2020, following a career spanning 23 years in senior roles at fast-growing charities. For 17 years she was CEO of Alzheimer’s Research UK, while there she grew the organisation from a team of two to over 70 employees and left it a multi-million-pound income charity. This allowed the charity to fund £53m of innovative dementia research across the UK.
Prior to joining Tom’s Trust Rebecca was CEO of Blue Smile, a Cambridgeshire children’s mental health charity. Rebecca managed the launch of two new services during her time there and doubled the charity’s income.
Four years on from joining Tom’s Trust, and as we launch our fourth service that will support the Thames Valley region, we take a moment with her to consider how the charity has grown, what is next, and what the main challenges facing the organisation are.
You have been at Tom’s Trust now for four years. How has the charity changed since you joined?
Tom’s Trust has changed a lot in the last four years. When I initially met with Debs, she was the CEO. She had developed the charity fantastically from scratch, but she didn’t have the experience to draw on to take it further and she felt that it was time for her to step aside. In 2020 we were very much a Cambridge charity. Although Cambridge will always be our home we are now much more of a national charity. When I joined, we already had our vision that ‘every child would have access to the mental health support that they needed, along with their families, after a brain tumour diagnosis’ but because it was a small charity and had grown organically, we didn’t have a strategy for what we needed to do to build the charity to achieve that. We now have our strategy and understand the steps we need to take, along with key foundational elements such as our information stream and our clinical psychologist network in place.
You are in the process of developing the charity’s next five-year strategy. Can you give us any insights into the vision you have for the charity?
It is always so exciting to develop the next stage of a strategy. I look back to the past three years and can see how much we have achieved; it has been great. Lots of those things will stay. We will look at how we can spread into new centres and regions, we are already putting a call out for the next two centres. We know we can do more with the clinical psychologist network – the neuro-oncology special interest group, so that we can support clinical psychologists who have their own vision of what each of their services could achieve with our support.
We are developing an information hub on our website, will be really important for us where, like with the sibling toolkit, we can develop resources to support lots of people (both patients and clinical psychologists) straight away. Thanks to National Lottery funding we have our new Director of Services Development, Clinical Psychologist – Dr Lynda Teape. Also in place, thanks National Lottery Funding, is Laura Bowditch, our Family Liaison Coordinator who is looking at how we can support families more broadly.
We also have exciting things like our transition work that we have already started to build in, our clinical work, our research, and we will be looking at what we can do to build a better life for children in the long-term after a brain tumour.
We have lots to consider, but at the heart is what is unique to Tom’s Trust and the work we do. We are keen to work with others, we are not looking to duplicate. We really want to fill some of the gaps that exist for our families.
Our fourth service is about to open in the Oxford Children’s Hospital, covering the Thames Valley region? Why was Oxford chosen?
We considered Oxford in 2022 at our last panel. It was then that we chose two centres to open – Alder Hey and Oxford. We opened Alder Hey in June 2023, and Oxford this autumn. We can see that Oxford has excellent leadership in Dr Jeni Tregay, but they have little resource. We felt that Oxford are in a position to share a lot of expertise and learnings with the rest of the network, and it will help that Jeni is now chairing the neuro-oncology special interest group. Also, they have an idea to support school reintegration and the concept of looking at the role that school can play in a child’s rehabilitation struck us a lot. It is an area that comes up with our other services and through our families. Current gaps for them are in developing support for bereavement and transition to adult services, both are areas we are very keen to explore.
What is the plan for the roll out of future services?
Our view, as we have discussed the strategy and developed ideas, is that we still want to continue our clinical psychology service and opening new centres is very important, but we have to consider the support that is needed for that, while looking at how we can improve things nationally and aspects that aren’t being covered by other charities. We know we need to be able to afford it. We must assess how long we support our services for, we would never want to abandon a service but for us we need to be sure that eventually the funding is adopted by the NHS. It is always a balance between continuing to support those in areas we are in and reaching those in new areas who have only access to the most basic support.
What are the main challenges facing Tom’s Trust today, and how can our supporters help?
The biggest challenge for us is funding, we have more ideas that we have the money for at the moment. We know we can develop over the next five years with sufficient funding, but it is always the balance of resource, especially in fundraising and communications. One of the biggest areas I ensured development of at Alzheimer’s Research UK was communications, the how you communicate is important. If people don’t know about you and don’t know what you do, families can’t access you and people won’t fundraise for you. Continuing to develop those areas is really important.
What does the role of a Charity CEO involve? Is there a typical day?
Every day is so different, particularly in a growing charity. You often adopt multiple roles as you go along, and eventually you’ll be able to bring specific expertise on board. I always liken the role to being a bit like a conductor once you become more overarching and less ‘doing’. It’s not that a good orchestra can’t proceed and get through, but it won’t be the same and you won’t have that strategic view of what you were trying to do. Particularly that long term view, you can’t have that without a CEO. It’s what small charities really struggle with. That is what I have been able to bring to Tom’s Trust.
Your career spans over 27 years in high profile leadership charity roles. What advice would you give to anyone looking to work in charity leadership?
Learning a wide range of skills is really important and understanding those aspects. Training is good but also, I would recommend becoming a charity trustee. You will be able to understand much more of what it feels like on the other side of the table – it gives you a real overview that you may not have in your current role. Getting involved with other aspects of the charity that aren’t particularly in your role will make you better at your job. We know that charity leadership is stressful, you need to be sure it is for you and make sure you pick the right charity that you feel passionate about.
What do you love about your work?
I really enjoy the variety and being able to bring that experience to my position. My most difficult thing is controlling my enthusiasm for all the things I would like us to do, and that we can’t afford to do yet or don’t have time or the resource. But it is also joyful to have that passion, and brilliant when we get a large sum in to commit to work or have helped a family or child. That worthwhile feeling is why we are all in the charity sector.
What is tough about your work?
The time to do things. Particularly when you have your head in so many spaces. Like many I procrastinate about the things I enjoy the least, but it doesn’t mean that they aren’t valuable. That’s the downside of small charities – sometimes you have to work without the specific expertise needed, nobody else has it either, so you have to try and work it out.
What are you most proud of in your career?
Going back to Alzheimer’s Research UK, we started as a half a million-pound charity and when I left, we were a 14-million-pound charity with a lot of influence. It is even bigger now. At a conference the then Chief Medical Officer said ‘we wouldn’t be here today if it wasn’t for Rebecca’ – pushing through from an unknown disease to gaining recognition that this was a major health problem that we needed to tackle. In all the work that I have done I tend to be a growth person, and that is what I get the thrill out of. I have been fortunate to be part of teams where we have managed to grow income and services, and we have kept developing the charity – that has kept interest going so it feels like a new job every day.
If you weren’t doing this role, what would you be doing?
More holidays and maybe I would start a dog walking business! Or more likely consultancy in charities and grant giving. The nice part of working directly in a charity though is being part of a team, and we really do have a lovely team.