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Jodie is one of our excellent coaches, having completed her ILM level 5 coaching training. Coaching at brainstrust is creating the most impact in driving engagement with care and building communities for people with a brain tumour, with people reporting 32% improvement in feeling part of a community, and 28% increase in engagement with clinical care.

 Name: Jodie Eveleigh

Role: Support Specialist and Volunteer Manager for the Midlands.  

Tell us a bit about your role and the type of things you do day-t0-day:

My role is very varied but it is all about supporting people at whatever stage they are in their brain tumour journey. This can be by answering specific questions, signposting to our resources or other services that may support them, or by being a listening and supportive ear to people in need. I also spend time travelling around the region organising Meetups and events, or visiting other groups to talk about the work of brainstrust.

What are your favourite things about your role?

One of my favourite things about my role is building relationships with the people we support. People can get in touch with us at any stage, whether that be at the point of diagnosis or a couple of years down the line, and I always feel quite honoured to be able to have the personalised contact with them. That is at the heart of what brainstrust does.

I also really enjoy meeting people in our community and seeing them build relationships and connections at our events. It is encouraging to see people being able to share their experiences with others who understand what they are going through.

What are the biggest challenges of your role?

I always want to do more and if I could make sure that everyone knew about brainstrust at the point of diagnosis then I would. Reaching out to hospitals and other support services is a key part of my role as it means that people can get the support that they need at the earliest opportunity.

What are your hopes and plans for your community?

I want to continue making sure that as many people as possible have access to our support. When faced with a brain tumour diagnosis knowing where to turn to for help can often be challenging so I want to keep spreading the word about brainstrust so people know we are here.

I also want to make sure people have access to a varied calendar of events across the Midlands region, which will give them not only the opportunity to meet others but also to learn about different topics such as fatigue and nutrition, that may help them throughout their journey.

What led you to apply for the role of support specialist at brainstrust?

My family experienced the impact of brainstrust‘s support services when my sister was diagnosed with a pilocytic astrocytoma aged 18. On hearing this news, we didn’t know where to turn, until my mum discovered a leaflet about brainstrust.

As an older sister I was struggling to process what was happening so I threw myself into finding out more about the charity and getting involved as a volunteer. As a family we held a number of fundraising events over the years and my sister even climbed Mount Snowdon with a group of friends after her surgery.

The support we received from brainstrust helped us to deal with the uncertainty that came with my sister’s brain tumour diagnosis. It meant a lot to know that there were people out there who understood.

Living with a brain tumour diagnosis is terrifying for everyone involved. Whether it is yourself or you are a parent, sibling, grandparent or friend, I aim to support people as much as brainstrust supported us.

What is something you’re proud of?

One thing that I am proud of has to be the people I have met within our community who do all the amazing things they do whilst going through this journey. It makes me feel incredibly humbled to hear about the different challenges and fundraising activities that people do for us as a direct result of the support they have received.

If you live in the Midlands and would like to get in touch with Jodie, please email jodie@brainstrust.org.uk

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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