In Charity News, Patient story

Our Shop’s Had a MakeoverWristbands

We’re really excited to be announcing that our brainstrust shop has had a makeover, it’s now fully refreshed and looking fabulous! Selling merchandise is an important part of our fundraising helping us raise vital funds. Getting out and about in the world with brainstrust merchandise on also helps raise awareness of us as a charity – you never know when it might spark a conversation.

The Shoot Day

On a grey Monday in April, we headed over to the University of Huddersfield on a mission to add a bit of colour to our brainstrust shop.

Three brilliant final year student photographers from the Photography BA course signed up to help us shoot all our merchandise. We arrived alongside our model, Michelle, and the students quickly got to work setting up the shoot. It was all hands-on deck ironing our stock ready for Michelle to get in front of the camera.

Michelle and the student photographers were amazing and soon flew through our branded clothing – they even roped the brainstrust team into some modelling!

Our wristbands, water bottles and other accessories got their moment in the limelight too with a special stock photo shoot going on alongside the model shoot.

It was a great day out with lots of giggles and some great results for our shop. But most importantly we are now able to showcase our merchandise with a member of the brain tumour community, so when people come to our store they see not just what we have to sell, but who we are selling it for.

Meet Our brainstrust Model, Michelle

Michelle is a member of the brainstrust community who very kindly came along to model our merch. We’ve spoken to Michelle about the shoot, and what it means to her to be involved in brainstrust.

Could you start by telling us a bit about yourself and how you became a part of the brainstrust community?

brainstrust shop makeoverI’d never heard of a Meningioma before I was diagnosed in 2016. From then on, I had an annual MRI scan, after time spent on ‘watch and wait’ I went in for surgery in 2020. While the doctor was in there, he thought oh we’ll have a bit of a party and removed 4! Right now, I’m waiting for the second surgery.

It was during this time that I found brainstrust. At the time you get diagnosed you start to research but try and avoid google. brainstrust was one of the ones I came across. I liked that it was smaller and more local, it felt more personal.

I get the brainstrust newsletter to find out about research and information. There’s just that confidence of knowing that if you needed to go and find something, you’ve got a port of call. And the newsletters make you think of things that you may have seen and forgotten about, or never thought of before.

When you saw our call out for models, what made you sign up and come along?

I nearly didn’t at one point! It was an impulsive, spur of the moment thing. I’ve never done owt like that before! It’s not like me, normally I plan meticulously, but because I haven’t worked for a couple of year I’ve been sat in limbo, so I though oh why not!

For a while I thought ‘what the hell have I done’, but it was locally enough for me to get involved without relying on someone else. I’ve got the opportunity to help, it’s something different, why not!

Plus, me being a model for the shop is an important part of raising awareness around meningioma’s. When people think of brain tumours, it’s the C word, it’s cancer. It’s not always just that. You can have brain tumours that are not cancerous and still have the same treatments, the same effects. A lot of people don’t realise that. It’s more common than people think, we need to raise awareness of this.

Getting out there, it’s helped me give back, we all have a role to play.

You seemed like a natural to us, but how did you find the shoot day yourself?brainstrust shop makeover

I was expecting formality, but actually although it was professional it was also informal and relaxed. We got to chat like we’d met loads of times before.

And the students were so organised, they were so good! I enjoyed it.

Do you have a favourite item from our store?

The beanie hat. You get pom pom hats, and you can’t get your hood up. The beanie just sits there nice.

And the grey t-shirt… I like them… grey hoodie, I like them… I just like grey actually!

Plus the clothes are really great quality, you can’t always tell when you’re ordering online, but it’s all great quality.

 

Thanks so much to Michelle for coming along to model for us. It’s important to us that our shop reflected the community we support, having Michelle as the face of our shop means that whenever someone comes to our store, they see the real brainstrust community.

 

Click here to visit our store and check out the new look!

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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