This website exists to help people affected by brain and spinal tumours find clear information, practical guidance and access compassionate support. It was created after realising that many patients and carers were asking the same questions, often without a reliable place to find background information.
Our aim is to help patients understand and optimise their care by working closely with their local oncology teams.
We also host monthly Horizons in Neuro-Oncology webinars, where leading experts discuss the latest clinically relevant research and developments.
ABOUT HORIZONS IN NEURO-ONCOLOGY
Instead, our focus is on what else might be available, because that’s where many people find gaps in the information they’re given. We concentrate on areas such as additional treatment options, clinical trials, and patient experiences - drawing on the expertise of professionals, the insights of patients and carers, and the latest evidence. Our aim is to help you explore these possibilities so you can have more informed conversations with your own medical team.
We’ve created this resource for patients, carers, families and friends affected by brain and spinal tumours. It’s not a beginner’s guide - there are already excellent organisations that explain the basics, and we link to them where relevant.
How we work
Access to promising new therapies and studies
CLINICAL TRIALS
Support for you and your loved ones
COMPASSIONATE CARE
Advanced therapies like Optune and Immunotherapy
INNOVATIVE TREATMENTS
Treatments guided by the latest research
EVIDENCE BASED OPTIONS
Tests and scans to diagnose a brain or spine tumour
DIAGNOSIS
Treatment explanations and statistics
Your local hospital and Neuro-oncology team
Treatment explanations and statistics
Emotional, financial and practical support
Overview of tumour types and standard pathways
Clear guides on how to navigate care and clinical trials
Trusted general diagnosis and treatment information
where else to look for basics
Additional treatment options that may be available to you
Advanced therapies
Clinical research opportunities
what this site covers
Whenever possible, we base our information on the best available evidence, and we make it clear when something comes from the lived experience of patients, carers or professionals rather than from research. While the evidence we draw on is often international, our guidance is designed for patients in the UK - though people from other countries may also find it useful.
At Horizons in Neuro-Oncology, creating meaningful, trustworthy resources is a shared effort. Consultant Clinical Oncologist Dr Matt Williams and Neuro-Oncology Clinical Research Practitioner Ms Lillie Pakzad-Shahabi work as part of a wider multidisciplinary team that includes clinicians, practitioners, researchers, patients and carers, all contributing to the development of clear, evidence-based information and support for people affected by brain and spinal tumours.
Together, the team brings extensive experience in neuro-oncology alongside lived experience, helping to bridge the gap between clinical research and real-world patient and carer needs. This collaborative approach ensures that information is not only clinically robust, but also accessible, practical and grounded in the questions and challenges people face at every stage of their journey.
By combining medical expertise, research insight and personal perspective, Horizons in Neuro-Oncology is committed to improving understanding, access and communication, and to making trusted, up-to-date information available to everyone who needs it.
Holds an undergraduate degree in Biomedical Science and a Master's degree in Neuroscience,
Lillie provides the organisational and administrative support for the monthly Optune Support Group
Leads the Patient and Public Involvement and Engagement (PPIE) work in the field OF Neuro-Oncology
Runs a Clinical Research Practitioner (CRP) clinic as part of the Whole-Genome Sequencing pathway in neuro-oncology
Lillie is often the first point of contact for patients and families. She helps coordinate consultations, gather medical information and organise imaging transfers, ensuring the process runs smoothly. Alongside this, she plays a key role in developing and coordinating research and patient-focused projects.
With over a decade of experience in neuro-oncology, Lillie combines a strong scientific background with a commitment to patient engagement. Her practical approach and clear communication help make complex information more accessible and empower patients and carers to feel confident in their next steps.
Esther combines her experience of supporting her husband, Stu, through a brain tumour diagnosis with a professional background in design and communication. Having created Inside Stuart’s Head, she understands first-hand how important clear, accessible information is for families affected by brain tumours. As part of the HINO team, she contributes both lived experience and professional expertise to help ensure every resource is clear, compassionate and easy to navigate.
Fiona Jones is an experienced brain tumour specialist nurse. She has spent more than 15 years working as a clinical nurse specialist, helping to coordinate care for patients and carers across a range of brain tumour diagnoses, including benign and malignant tumours and brain metastases.
Dhriti was diagnosed with glioblastoma in 2023 after experiencing changes in movement and severe headaches. As a young patient at the prime of her professional career, she researched extensively to explore alternative treatment avenues alongside standard of care, without resigning herself to the usual narrative of a 15–18 month prognosis. After coming across several people with radically better outcomes, she became keen to help other newly diagnosed patients build tangible hope and access available resources, particularly those in the Global South.
This section will include information about Oliver, outlining his lived experience of being diagnosed with a brain tumour and his role as a patient advocate. It will describe how his perspective helps shape the information shared on the site, ensuring it remains relevant, accessible and grounded in real patient experience.
Dr Seema Dadhania is a Consultant Clinical Oncologist at Imperial College Healthcare NHS Trust and an Honorary Senior Lecturer at Imperial College. Her PhD focused on the BrainWear clinical trial, which explored the use of smart watches in patients with brain tumours.
David brings his experience of caring for his father, who was diagnosed with a glioblastoma, together with a professional background in IT as an installation engineer. He offers a dual perspective - that of a primary carer and of someone interested in how technology can support patients and families throughout treatment.
David’s experience of his father’s care, delivered with professionalism and compassion even during the challenges of COVID, shapes his commitment to helping ensure information and support are accessible, practical and patient-centred.
Nicola became involved in brain tumour advocacy following her daughter Laura’s diagnosis with glioblastoma. Since then, she has worked as a fundraiser, speaker and campaigner, collaborating with charities including Our Brain Bank and The Brain Tumour Charity to support improvements in understanding, research and treatment, particularly for young adults. She is also the author of The Stars Will Still Be There and founded the Be More Laura Foundation, which funds research into kinder, more effective treatments.
As part of the HINO team, Nicola brings lived experience and advocacy insight to help shape resources that are clear, compassionate and grounded in the realities faced by patients and families.
Chief Medical Officer - personalised cancer treatment with Biotech
PEAR BIO
Strong Academic and Research background - improving access to evidence-based care
RESEARCH & CLINICAL TRIALS
Leads Computational Oncology Group - data-led innovation in brain cancer
IMPERIAL
COLLEGE LONDON
NHS Clinical Practice - treating patients in West London
CHARING
CROSS HOSPITAL
Dr Williams specialises in the treatment of adult brain tumours, working alongside a wider team of experts to ensure patients have access to the most up-to-date, evidence-based treatments - from standard therapies such as radiotherapy and chemotherapy to newer options including Optune, immunotherapy and personalised medicine.
He has introduced Optune in the UK, helped expand the use of combined chemotherapy for glioblastoma multiforme (GBM), and led multiple UK and international research projects and clinical trials, including BrainWear, BrainApp, Capable, PEAR-GLIO and BEAT-Breast. His research focuses on improving outcomes, broadening treatment choices and ensuring patients can access care as close to home as possible.
Cross-specialty trial focused on treating brain metastases
BEAT-Breast
2023
AI-driven personalised treatment planning for glioblastoma
PEAR-GLIO
2022
Decision-support tool for precision oncology planning
Capable
2021
Mobile-based app for symptom tracking and patient engagement
BrainApp
2020
Wearable tech trial to monitor brain tumour patients remotely
BrainWear
2019
Patients family
Access to a website like this would have been a breath of fresh air during the chaos and confusion that followed my husband’s diagnosis. Having clear, specialist-led information in one place would have helped us better understand what was happening, what options existed and how to navigate decisions with more confidence. At a time when everything felt overwhelming, clarity and compassion in how information was presented would have made a real difference. I’m really glad that this website now exists for others facing a similar situation.
Patients family
Tackling a GBM diagnosis is extraordinarily overwhelming, the stats bulldoze you & researching treatment options online is sole destroying. Having one consolidated place to connect with other patients, understand additional treatment options & potential trials & follow others journeys is incredibly comforting and very much needed. Thank you. It’s a tough journey and we only get through it by all sharing our discoveries to make each others experiences that little bit easier.
Thank you for putting the time aside for this website. Being a caregiver to a 10momths in GBM patient I can honestly say that this website will benefit future patients enormously.
Patient
When everything changed, I didn’t want medical jargon or endless links. I just wanted clear, honest information I could actually understand.
Having it all in one place helped. Finding the information together was a huge relief. We could stop Googling and start getting a clearer picture of what was going on.
I could come back when I was ready. Some days I read a lot. Some days I couldn’t read anything at all. Knowing I could come back without pressure really helped.
Knowing more made things feel less chaotic. Understanding my options didn’t fix everything, but it helped things feel a little less out of control.
This was about more than treatment. This affected my whole life - not just my health. Seeing emotional and practical support included made me feel like that was understood. I didn’t feel like I was doing this alone. It felt like someone had already done the hard work of pulling this all together for me - and that meant a lot!
This website is an independent resource, developed by the Horizons in Neuro-Oncology (HINO) team in the UK. Initial development was supported by Dr Matt Williams and Lillie Pakzad-Shahabi, with grant funding from Novocure to support ongoing work.
HINO maintains editorial independence. While the team collaborates with a range of healthcare organisations and receives grant support from Novocure, all content is created and reviewed by the HINO team and reflects their combined clinical expertise, professional experience, and lived experience as patients and caregivers.
While content is based on UK clinical practice, much of the information may be relevant to international readers. It is provided for general guidance and should not replace medical advice from your own healthcare team.
Please use this information to support discussions with your local oncology team, or see our advice on obtaining a second opinion.
