It has been three months since our newest service, that support the Thames Valley region, launched. The service runs from Oxford Children’s Hospital and is already reporting significant impact. We took a moment this Children’s Mental Health Week to catch up with Dr Emily Townsend, our Tom’s Trust clinical psychologist. We discuss her first three months, how she supports families through a child’s brain tumour diagnosis, and what areas she would like to investigate further in the future.
Dr Emily Townsend, Tom’s Trust clinical psychologist
You are three months in and your presence is already having a big impact on your service. Can you talk us through the top three improvements you have seen since you started?
I can’t believe it’s been three months; it’s gone so fast!
Firstly, we have managed to get everyone booked in from the waiting list for both neuropsychological assessment and therapy. As a result of that I’ve met with 38 families in the last three months. That’s the achievement I’m most proud of.
Secondly, with this post we have much greater flexibility of what we can offer. We’re able to reach more families but also provide them with a greater breadth and depth of work. I have been able to be reactive and see the families that needed it, including those who are in for surgery, multiple times which has been great. I have also been able to offer more sessions for individual therapeutic work, and for siblings – that is something we couldn’t offer before.
Finally, I would say working on the processes that are behind what we do. In any service, the processes behind how they work are important to make sure we’re working effectively and reaching everyone and have equal access to the team for families. I’ve been in touch with the other Tom’s Trust psychologists and integrated myself into the wider hospital team and connected with related organisations.
What is your focus for the next three months?
There’s so much we want to do and finding a focus has been quite difficult. I’m aiming to keep getting to know as many families on treatment as possible and to make sure that that support is available for the families who want to access it. For families that don’t need the support now, I want to make sure they know who we are and how to get in touch with us if things change. It’s much easier to do that if you know the face behind it.
Getting families views is important. We want our service development to be guided by their needs and aligned with their priorities to make sure that what we’re doing has the biggest impact and is what people want. I’m keeping track of the themes that are coming up in one-to-one work to help us to think about some future groups.
Another focus is establishing myself further in the role, working with the oncology team, thinking about our priorities as a wider team, building the networks with NHS colleagues, wider systems, and making sure that the Tom’s Trust role is really integrated into all of those different aspects.
This is your first qualified role, how are you settling in? What have you enjoyed and have there been any challenges?
It’s an amazing first role to have. The Oxford team is incredible and supportive, and Tom’s Trust have also been wonderful and make me feel so valued, which has been great.
A challenge has been there’s lots to learn, which is a nice challenge to have. I’ve been accessing training and drawing on all the expertise and experience in our neuro-oncology team and getting to know the specific patient group and getting more of a sense of what the children and young people and their families experience on different pathways. So, finding out the difference between someone who might be having surgery versus surveillance scans versus chemotherapy versus radiotherapy or a combination of them. There’s so much variation and experience. I’m developing a bit more of an idea on what the different challenges are for families and the experiences that they have.
There has been lots of space for creativity, which I really appreciate, something that really drew me to working with children in the first place. And I just feel very lucky to work with such an astonishing group of young people. I’m finding service development to be exciting. Jeni and I have so many ideas, we’re excited for lots of things, and it’s been a case of kind of getting some of the foundations in place so we can start planning and doing those.
How do you support families and children facing a child’s brain tumour diagnosis?
Working with this patient group is a really different way of working to some of the teams that I’ve been with before. In some teams, people are either open to the team and they’re having regular therapy, or they’re not open to the team. Our service can account for the fact that families are on a long journey of ups and downs, and we can be much more responsive to that.
We offer therapy to the young person, and siblings and parents, school liaison, inpatient work, check-ins if children come in for day care, neuropsychology assessment, and end of treatment reviews – there is a real range of ways we help. We can be integrative with techniques and approaches. We are always considering the child or young person’s neuropsychological impact of having a brain tumour or brain injury, as well as social and psychological factors. We can use and draw on lots of different modalities. In the last three months, I’ve been using cognitive behavioural therapy, compassion focused therapy, narrative approaches, and of course, all the work with systems around the young person. When families need things that are other than psychological support, we can also signpost them to other teams. We have that overview of the system, and we can link people in with the most appropriate support at the right time.
The greater capacity with my role means we can do more proactive work as well. I’ve managed to see some of the families before surgery as well as after, and we can do more extensive work. As a team, our support is all about being flexible and responsive to needs and being able to draw on that kind of lifespan training across different techniques to provide the best support for the family.
What areas of interest would you be keen to explore further to support this unique group of children, and their families?
The thing that I’m really excited about right now is working towards running some groups, which I think will really help young people and their families to make connections with other people who have had / are having a similar experience. Most of the young people I see haven’t met another person with a brain tumour, let alone another person their age. Creating a space for that social support and that shared experience is something that I’m keen to provide.
We aim now to see everyone at the end of treatment for a review. Wouldn’t it be great to have the opportunity to link families in with one another and with medics and onward support at that time, which can be a time of celebration but can also feel really daunting for families. So having a specific group around that point would also be helpful.
I’m very interested in school liaison. I speak with a lot of schools, whether it’s passing on recommendations from a neuropsychology assessment and adaptations or around anxiety, returning to school. There are lots of reasons why I would be in touch with them, so we’re planning on developing some school passports so that children can have that document that travels through the years and between schools with them. It’s great if we can talk to class teachers but then they move years, so it then relies on the schools to be sharing that information. It would be great for there to be something that the young person and parent can take with them. We always try and see children just before transition to senior school or if we can see GCSEs are coming up – we’re mindful of those events in a child’s life, making sure that they’ve got the support in place. But this would really empower families and young people to be able to do some of that advocacy for themselves.
Why do you think families need support from Tom’s Trust?
There’s such a wide range of experiences across all the families that we support. But for all of them, it is an experience that’s difficult and unusual. And being able to offer flexible support within that is something that’s fantastic. The impact of our work is not just felt by the child, but by their families, schools, and I think the wider care team as well, knowing there’s kind of that containment there. As clinical psychologists, we’re lucky we have that overview of all the teams and support involved. We can help people to be plugged in with the right support then at the right time, which is why that integration into all those different teams is something I’ve been really prioritising.
I saw a sweet girl who said, ‘this is the best doctor’s appointment ever’. I saw her again last week and her parents said, ‘oh she’s been telling everyone she’s going to see her favourite doctor’. Providing those experiences with children who may have had adverse experiences in the hospital is incredibly important. We are working as psychologists, more often within an area with some heaviness to it – so it is a pleasure to have those little moments of joy. It’s hard to articulate the change but it’s in those little moments where you think ‘I’m so privileged’.
It is nice to be able to work with our family’s long term. When we’re doing our psychology assessments we can book ahead by years. We and our families know that we are still here if anything changes, and they can reach out if they need us. It’s a different way of working but an amazing one.
About the team at OUH:
Dr Jeni Tregay & Dr Emily Townsend doing their T for Tom
Dr Emily Townsend is our clinical psychologist based at Oxford Children’s Hospital. Emily has experience in a variety of different services including CAMHS, community neurorehabilitation, paediatric psychology, and paediatric neuropsychology, and has developed a particular interest in neuro-oncology. Emily enjoys working creatively and using people’s interests to promote engagement in psychological work.
Emily is supported and supervised by Dr Jeni Tregay, a clinical neuropsychologist with a special interest in paediatric neuro-oncology. She is a full member of the BPS Division of Neuropsychology and is on the UK Specialist Register of Clinical Neuropsychologists. Jeni has worked in the paediatric neuropsychology service at the Oxford Children’s Hospital since 2015, where she leads the psychology service for children and young people with primary brain tumours.