Rachel’s Story

brainstrust has been a lifeline to me these past 15 months. My story began in the spring of 2023: I was suffering from a very sore tongue, everything tasted strange and my hearing was bad on the left side. I decided it was part of the ageing process.

Then in the summer I started becoming clumsy and a bit dizzy, tripping over every now and then. In September I had terrible eye pain but my optometrist couldn’t see anything wrong. Then in October I collapsed and fell in the street. It felt like someone had hit me really hard in the back. Passers-by came to my rescue and I sat for a while with my legs shaking uncontrollably.

I phoned my GP surgery and later that day received a message that the doctor would like to see me in the morning. At the time I was halfway through a masters degree in Education at the University of Exeter, I was living on my own and self-employed. I suddenly felt incredibly vulnerable

My doctor was great-I was lucky he was there, as he was a retired partner locuming that day. Within two weeks I was sent to an ear, nose and throat specialist, had a hearing test and an MRI. One evening towards the end of November, I got a phone call from a consultant who informed me that he was very sorry but the MRI showed I had a brain tumour known as a vestibular schwannoma (VS). It was very large, and he was referring me to the clever skull base specialists in Bristol. He said I might like to do some of my own research, but not to ‘Dr Google’ it. He would send some information.

Speechless and stunned, I had to tell my mum (who I was now living with, as a boomerang 54-year-old).

I found brainstrust and ordered a Brainbox – which is a priceless information pack – and became part of this unique, precious brain tumour community. My 28-year-old son Kez and 25-year-old daughter Jessie were included right from the start and helped me immensely. My younger sister Emily became my main carer, while my closest friends took it in turns to visit and look after me.

Surgery was the only option for me as the tumour was pressing on bits it shouldn’t, and hydrocephalus was present. By now I couldn’t sleep lying down, I was sleeping in a sitting position because my head felt like a wobbly water balloon. I had a lot of pressure pains in my head too. I met my neurosurgeon on the 19th January 2024 and surgery was booked for the 29th. I had 10 days to prepare: not enough time to worry, just to sort things out and be with those I love. I attended a brainstrust breathwork session at this time, and requested the soundtrack, which soothed me and helped with night-time anxiety, and later on in hospital.

My surgery was incredibly long, 15 hours. I had an EVD (external ventricular drain) to drain litres of fluid from my brain over the next two weeks. I spent two days in ICU, then 18 days on a high-observation ward. I collapsed and fainted several times after the operation but it was more scary for my loved ones than me. I felt very safe at Southmead Hospital; I am forever grateful to my neurosurgeon Mario Teo and his team, and all the nursing staff who looked after me so well.

As soon as I could, I started joining brainstrust online meetings. Their complementary therapies such as hypnotherapy with the amazing Louise, and Art Time with Maddy and Carol (see one of my paintings – left) , with all the incredible brain tumour patients also attending, have helped me rebuild my life. I have also attended a writing workshop and a focus group for VS patients.

Being a self-employed student, I was in a financial situation I didn’t expect and I am incredibly thankful to brainstrust’s Eric who helped me sort this out. My amazing coach Ellie is now helping me get back into life and find ways to deal with new everyday experiences and I have my brave, inspirational peer mentor Nikki to thank, whose chats I always look forward to. I am now on my neuro-rehabilitation journey and looking forward to the future. I will have my next MRI in August 2025 to see if the residual tumour is stable, but mentally I am feeling much better. brainstrust has been a major part of this and I have now become a brainstrust Peer Supporter to talk to and help others who may be in a situation similar to my own.

 

 

Introduction

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: http://cancerdata.nhs.uk/standardoutput

Incidence

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

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

Mortality

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.

Non-malignant

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

Survival

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

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

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

https://www.brainstrust.org.uk/advice-glossary.php