what you will find on this page
When you’re diagnosed with a brain or spinal tumour, it’s important to know all the options available to you. Alongside standard treatments, there may be additional ways to support your care - from emerging therapies and specialist services to opportunities to join clinical trials.
HOW TO ACCESS ADDITIONAL CARE
Attend private consultation (paid, wider range of treatments may be discussed)
Appointment usually arranged within days/weeks (much faster)
Clinic confirms suitability, provides pricing and appointment options
Contact the specialist or clinic directly (self-referral)
Attend NHS second opinion (free, but limited to NHS-approved treatments)
Wait for NHS appointment (can take several weeks/months depending on availability)
Request a referral for a second opinion (GP or consultant completes referral form)
Speak to your GP or your current neuro-oncology team
- Availability and scope: NHS treatment options are limited, and specialist centres are often very busy. Some centres may not offer a second opinion if they believe the treatment you’re already receiving locally is the same as what they would recommend.
- Private options: Many of the additional treatments discussed on this site are only available privately. In these cases, some NHS centres will require a private appointment to have the time and flexibility to discuss them in detail. For example, a centre that offers combined temozolomide (TMZ) and lomustine on the NHS may be able to discuss this in an NHS second opinion, but not Optune (which is not available on the NHS).
- Referral process: NHS second opinions require a referral from your NHS doctor – this could be your GP or your local neuro-oncology team. If you’d prefer a private second opinion, you can usually self-refer, and this can sometimes be a quicker route.
NHS treatments and private-only options such as Optune
Often quicker to arrange
Can cover both NHS and private treatment options in detail
Usually no, you can self-refer
Fee-based
PRIVATE second opinion
NHS treatment like combined TMZ+Lomustine (if offered locally)
May be longer due to NHS capacity
Usually limited to NHS available treatments
Yes - from GP or neuro-oncology team
Free
nhs second opinion
examples of what may be discussed
wait time
scope of discussion
referral needed?
cost
- Arranging transfer of your imaging
- Booking an initial call with a clinician
- Following up with a clinic appointment to discuss your options
- Your contact details
- A summary of your treatment so far
- Your tumour pathology report
- Information on where your imaging was done
The information you’ll need to provide is typically the same as for NHS referrals:
You will need to provide:
- A brief summary of your diagnosis and treatment
- Any pathology reports or biopsy details
- Copies of your scans or imaging data
You can find details on how to transfer imaging safely and securely through NHS or independent services such as WeTransfer or dedicated patient portals.
We’ve included this information to help you understand the process - not to promote any specific service.
- Treatment can sometimes be delivered either by the consulting team or by your local oncologist, depending on the approach agreed and local availability. In some cases, certain treatments may not be offered locally, but options can usually be discussed to find the most appropriate route for your care.
After your consultation
- Consultations are usually available either in person (London) or via secure video call, depending on location and preference.
- The timeframe from initial enquiry to consultation is typically 3–7 days, depending on how quickly the required information is received.
Appointments
- UK patients: Imaging can usually be transferred electronically from your hospital or imaging centre to our clinic.
- International patients: Please use a secure file-sharing service, such as WeTransfer, to send your imaging files.
Imaging transfer
- Self-pay: £250 -£500 for an initial consultation
- Health insurance: Many providers will cover the cost - please confirm with your insurer before booking
fees
Largest UK brain tumour charity; information, clinical trial search tools, support lines, and specialist nurses.
WHAT THEY OFFER
Brain Tumour Support
Tessa Jowell Brain Cancer Mission
Brainstrust
Brain Tumour Research
The Brain Tumour Charity
Funds scientific research, provides educational resources, and campaigns for more treatment funding.
WHAT THEY OFFER
Brain Tumour Support
Tessa Jowell Brain Cancer Mission
Brainstrust
Brain Tumour Research
The Brain Tumour Charity
Personalised support for patients and carers, 24/7 helpline, and help navigating clinical trials.
WHAT THEY OFFER
Brain Tumour Support
Tessa Jowell Brain Cancer Mission
Brainstrust
Brain Tumour Research
The Brain Tumour Charity
Works to improve care through Centres of Excellence and promote innovation in brain tumour treatment.
WHAT THEY OFFER
Brain Tumour Support
Tessa Jowell Brain Cancer Mission
Brainstrust
Brain Tumour Research
The Brain Tumour Charity
Emotional and practical support services for anyone affected by a brain tumour across the UK.
WHAT THEY OFFER
Brain Tumour Support
Tessa Jowell Brain Cancer Mission
Brainstrust
Brain Tumour Research
The Brain Tumour Charity
Note: The information on this site is designed to help you understand your options and feel more informed. It should not replace advice from your own medical team, who know your individual situation and can guide you on what’s best for you.
These organisations focus specifically on brain tumour patients and families, offering trusted information, practical support, and help navigating treatment options.
Comprehensive cancer information, emotional and financial support, and guidance on accessing care.
WHAT THEY OFFER
Penny Brohn UK
Cancer Support UK
Maggie’s Centres
Cancer Research UK
Macmillan Cancer Support
Detailed information on cancer treatments, clinical trials, patient stories, and financial guidance.
WHAT THEY OFFER
Penny Brohn UK
Cancer Support UK
Maggie’s Centres
Cancer Research UK
Macmillan Cancer Support
Free practical, emotional, and social support in welcoming centres staffed by cancer specialists.
WHAT THEY OFFER
Penny Brohn UK
Cancer Support UK
Maggie’s Centres
Cancer Research UK
Macmillan Cancer Support
Free Cancer Kits, peer-support groups, and emotional support during and after treatment.
WHAT THEY OFFER
Penny Brohn UK
Cancer Support UK
Maggie’s Centres
Cancer Research UK
Macmillan Cancer Support
Holistic support, including nutrition, mindfulness, and physical well-being programmes alongside medical care.
WHAT THEY OFFER
Penny Brohn UK
Cancer Support UK
Maggie’s Centres
Cancer Research UK
Macmillan Cancer Support
Note: The information on this site is designed to help you understand your options and feel more informed. It should not replace advice from your own medical team, who know your individual situation and can guide you on what’s best for you.
These cancer support organisations offer information, emotional care, and sometimes help with accessing additional treatments.
Book your consultation and bring any relevant medical reports or scans
Decide whether an NHS or private consultation is best for you
Check clinical trial options and second opinion guides from Brainstrust and The Brain Tumour Charity
Explore the charity websites for information relevant to your diagnosis
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.
