Navigating your pathway

Living with a brain tumour is bewildering, isolating and scary. There are key things you should be doing that will help. One is to keep records of everything (our patient folder which comes with our brain box helps here) and the other is to always get a copy set of your MRI scans. As a patient, this is your data – it belongs to you. Ask your imaging department for a copy set.

Having the information that you need at your fingertips can transform the feeling of control that you have, whether you are a patient or a caregiver.

On this page you will find:

  • What to expect from your pathway
  • The Neuroscience Multidisciplinary Team (MDT)

A typical pathway

But nobody is ‘typical’ – and when you add in the fact that there are many different types of brain tumours, all of which have different prognoses and their own idiosyncrasies, this kind of pathway is only ever going to be big picture.

So use our patient guides to help you navigate. This is the only comprehensive, easy to understand guide of the adult brain tumour pathway. They will help you to know more about what to expect so that you can feel more in control.

And of course, for those particularly thorny questions you can always email or call 01983 292405.

The Neuroscience Multidisciplinary Team (MDT)

We’re great believers in knowing the big picture, then you know what your options are. Equally, though, we know that not everyone wants to know about their diagnosis. Everybody has a different way of dealing with an illness. So this information is for you to use – or not. It’s up to you.  And of course, even if you have made a decision, you can always alter course. Having a route mapped out doesn’t mean that you have to stick with it. Once your brain tumour has been diagnosed your case should be discussed at a multidisciplinary team meeting (MDT meeting). A key recommendation of the NICE* ‘Improving Outcomes Guidance’ is that:

The care of all patients with brain and other central nervous system (CNS) tumours should be coordinated through a specific model of multidisciplinary assessment and care:

  • a designated lead in every acute trust
  • a neuroscience brain and other CNS tumours MDT
  • a cancer network brain and other CNS tumours MDT
  • a key worker

As a number of options will be available for your treatment these meetings are very important and should be the minimum which you can expect. The MDT meeting will enable your case to be discussed by radiologists, neurosurgeons and oncologists. They will the best pathway for you.

Treatments will depend on the type and grade of brain tumour. The most common forms of treatment are:

  • Watch and wait
  • Surgery
  • Drug therapy (chemotherapy, immunotherapy, gene therapy)
  • Radiotherapy
  • Combined chemo/radiotherapy
  • Best supportive care

Your treatment plan will either be radical and/or palliative:

Radical: In some cancers the intent is to cure. For brain tumours the aim is to stabilize the disease with best standard treatment which currently is a combination of radiotherapy and oral chemotherapy.

Palliative: The intent here is to relieve the symptoms when a cure is not possible. Sometimes it is better to look after the symptoms because to deal with the cause may be too damaging.

However, it would be nice to think that you might be included in these decisions too! So these are the things that you should consider, to make sure that your care pathway belongs to you and not the MDT:

  • Your wishes regarding your treatment
  • The type of tumour
  • Where it is located
  • The size of tumour
  • The risks and potential benefits of available treatment options
  • Your overall health
  • Your age
  • The type of healthcare services available and your ability to travel
  • What other options are available outside your locality, even country
MDT member Description
Neurosurgeon(s) A specialist neurosurgeon who spends at least 50% of clinical programmed activities in neuro-oncological surgery and is regularly involved in dedicated speciality clinics caring for these patients.
Neuroradiologist A consultant radiologist with at least 50% of clinical programmed activities spent in the practice of neuroradiology.
Neuropathologist Registered as a Neuropathologist or histopathologist and has specialist expertise in neuro-oncology..
Neurologist A consultant neurologist with expertise in neuro-oncology, epilepsy or neuro-rehabilitation.
Oncologist A clinical oncologist with a special interest in tumours of the CNS
Clinical nurse specialist A nurse with specialist knowledge of CNS tumours and skills in communication
Palliative care A healthcare professional (normally a member of the palliative care team) with experience and expertise in the provision of palliative care services for patients with CNS tumours
Neuropsychologist A clinical neuropsychologist with a special interest in tumours of the CNS
Specialist allied health professionals (AHP) Representative of AHPs, including occupational therapy, physiotherapy, speech and language therapy, dietetics and others as appropriate, who have knowledge and experience of dealing with the patient group, with responsibility for education and liaison with other local AHPs
Coordinators An administrative post responsible for coordinating patient registration with the neuroscience MDT and data collection
Others as required E.g. representatives from ward nursing, community palliative nursing, psychology/psychiatry and epilepsy nurse specialists

The best practice should look like this, so that you don’t become ‘lost’ in the system:

patient pathway

For more information about some of these professionals have a look at our Who’s Who in Your Clinical Team booklet.

The website you have prepared is impressive and very helpful to many of those struggling with their diagnosis and treatment.

Professor Roy Rampling, Glasgow

Resources used in creating this page:

brainstrust patient/carer representative

Consultant Neurosurgeon

Clinical nurse specialist

National Institute for Health and Clinical Excellence guidelines – Improving Outcomes Guidance Brain and CNS Tumours 2006

Living with a Brain Tumour  (Peter Black) 2009

Fast Facts – Brain Tumors (Abrey and Mason) 2009

Primary Central Nervous System Tumors – pathogenesis and therapy (Current Clinical Oncology, Humana Press 2011)

The cancer council

Did this information make you feel more resourced, more confident or more in control?

Date published: 17-05-2009
Last edited: 28-02-2018
Due for review: 28-02-2021

This information is currently being reviewed as of Feb-2022

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sidebar brainbox


The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here:


The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.


Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites


The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.


Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.


The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.


More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here: