In Charity News, Uncategorized

Name: Carol Cochrane

Role: Support Specialist and Volunteer Manager for Scotland

Tell us a bit about your role and the type of things that you do day-to-day.

I support people at any stage in their brain tumour journey. This can be by providing brainstrust resources, through coaching, answering any questions they have and generally being a pair of ears removed from their situation but, having been there myself, that understands.

What are your favourite things about your role?

Most definitely the people I meet through my work. It’s a hugely humbling job and there is a great deal of trust that you build up with the people that you’re working with. The feedback from people is always lovely knowing the impact we make as a team.

I’m also lucky I get to attend conferences so I get the opportunity to see any progress made on the medical side of things.

Our work evolves all the time and with changes we’re constantly learning. No two days are the same.

What are the biggest challenges of your role?

You want to be able to reach everyone who needs support and you want everyone to have access to our information. Thankfully I’ve built relationships with other cancer charities who are happy to stock some of our resources and signpost people to us.

Some of us work from home which could be a challenge but we speak and meet regularly so we’re always there to support one another.

What are your hopes and plans for your community?

To have a community where people feel supported and resourced with the opportunity to meet others through our meet ups and well-being workshops. The social aspect is so important as it can be very isolating. Meeting with others in a friendly, informal setting is priceless.

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

In a nutshell – the support my family received from brainstrust!!

My super healthy dad was diagnosed with a glioblastoma in July 2012. Sadly there was nothing that could be done to treat him and we were sent home and told he would be dead within six months. My dad didn’t want to know anything about the tumour, my mum struggled to cope so I felt I had to try to regain some control of the situation to ensure dad’s wishes were met. My dad’s only wish was to die at home and I was willing to move mountains to ensure this would happen.

The feelings following the diagnosis were awful – people were so lovely to us but no one really understood the impact, fear and isolation we were feeling. I applied for a brain box and it was a defining moment for us. From then on brainstrust ensured we were never alone.

We fulfilled dad’s wish to die at home and the last six months we spent making memories with dad, ensuring nothing was left unsaid and his final journey was wrapped in warmth and love.

Losing dad was the hardest thing I’ve ever had to face but brainstrust supported us every step of the way and ensured we were able to care for dad at home whilst making precious memories.

I loved the whole ethos of brainstrust and felt no one came close to offering what they did. The loss of my dad left a huge gap in my life but a passion to want to help families just like ours. The opportunity for regional support came up in my region and I felt I had something to offer.

What is something you’re particularly proud of?

As a family we regularly fundraise in memory of my Dad. A few years ago I was looking for something that I thought would challenge me as it might be a way of getting more donations! I hate heights ( you can’t even get me up in loft in our house!) and for some reason I thought a sky dive seemed a good idea.

Within a fortnight I had exceeded my fundraising target so there was really no going back. Some of my friends from the brain tumour community had donated for me to wear grey pins with their loved ones names on it on my sky diving suit.

The day itself was a beautiful clear day and it was nerve racking as the plane climbed to 10,000 feet. The drop itself was over quickly but nowhere near as bad as I had anticipated. My tandem instructor, Chris, even persuaded me to open my eyes to point out some landmarks on the way down.

It was a once in a lifetime experience and only my Dad and raising money for brainstrust would have got me to do it, but I like to think Dad would be proud. It’s still not cured my fear of heights mind you!!

If you live in Scotland and would like to get in touch with Carol, please email carol@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