In Charity News, Do your own thing, Fundraising News

Wear Grey For A Day – A Huge Success!

On Monday 1st October, we wore grey. We wore grey to raise funds and awareness for brain tumours. To tell the world about the impact a devastating brain tumour diagnosis can have, and the ‘invisible’ challenges that a brain tumour brings. Challenges such as memory loss, fatigue and loss of identity.

This year, thousands took part in Wear Grey. Together, we drove the conversation on brain tumours, and raised thousands of pounds to support people with brain tumours.

Caren Dowsett and her colleagues at WSP – Herfordshire County Council took part in Wear Grey following the support brainstrust gave Caren when she was diagnosed with a brain tumour over 5 years ago.

 

 

 

 

 

 

 

 

 

 

 

 

 

Wear Grey for a Day 2018 – the numbers

  • Over £14,000 raised to support brain tumour patients – so far!
  • 235 Wear Grey fundraising packs sent!
  • Over 2000 participants!
  • 5000 Wear Grey stickers!
  • 357 brainstrust grey ribbon pins!
  • 126 brainstrust wristbands!
  • 192 text donations – raising over £1,000!

Tell us how you spent Wear Grey

One of our favourite things about Wear Grey for a Day is hearing the many wonderful ways you have taken part, and seeing photos of our supporters wearing grey. If you took part in Wear Grey at home, in your school or at your workplace, then we’d love to see and hear how it went! Please email Ryan and tell him all about your Wear Grey!

Laura Hunter chose to Wear Grey in memory of her uncle, and following the support she has received from brainstrust following her own diagnosis with a brain tumour.

How to pay in your fundraising

All the money raised by Wear Grey for a Day goes to supporting brain tumour patients following a devastating brain tumour diagnosis. If you fundraised as part of Wear Grey, paying in your funds is simple. You can do this by bank transfer, cheque or use Just Giving – whichever is the easiest for you.

For more information on how to pay in your donations by cheque or bank transfer, this can be done on the Donate section of our website. And if it would be easier for you to pay in your fundraising on Just Giving, this can be done by clicking here.

Steph Richards and her fellow students at Newcastle Medical School wore grey in support of her husband and all those suffering from brain cancer.

Still time to donate!

If you were unable to take part in Wear Grey but would like to donate, or if you took part and haven’t already done so, then don’t worry – there’s still time to donate! And remember, every penny raised goes towards supporting brain tumour patients, helping them to feel less alone, less afraid and better supported.

 

 

Kymmy’s Story

On 1st October, Kymberley Byrne took part in her first Wear Grey. Here, she tells us why she took part, and what Wear Grey and brainstrust mean to her.

‘On May 26th 2018, I married my best friend. Less than a month later, we were shaken with the news that I had a large brain tumour. As newlyweds, we didn’t expect to be having these life changing conversations so soon. On 23rd July, I had an emergency Craniotomy to remove the tumour, and had a Cranioplasty to replace ¼ of my skull.

Prior to surgery, I was a lively and sociable person, but after the surgery, I completely lost myself. I had to learn to use my limbs again, generated a stutter, was always tired, had terrible memory loss and was angry all the time. Then I found brainstrust and received my free brain box. Receiving this, and joining the brainstrust Facebook support group was the turning point for me.

Wear Grey for a Day for me was inspiring and therapeutic for me. I even decided to fundraise, despite recovering from my fourth surgery of the year. I woke up on 1st October to an amazing ‘Wear Grey’ newsfeed, where friends and family as far away as Canada and Vietnam wore grey for the day, and got their workplaces involved too. This sparked an awesome domino effect, creating a huge amount of awareness.

With the support of my husband, our families, my work colleagues and my amazing friends, we were able to raise a fantastic £2,261 for Wear Grey for a Day. I would not be where I am now if it was for the brainstrust support network. I am no longer scared or nervous to talk about my story, and I am so proud of my scars. I have become more determined, and I have found a strength that I never knew I had. Thank you everyone for your kindness and generosity for Wear Grey for a Day 2018, here’s to 2019!’

 

 

 

 

, , , , ,
london meetup 3 e1538586889215
Come and join us at a brainstrust Meetup!Brain News, Charity News, Patient & Carer Events
image1
Dai’s journey – from musician to patient to musician againUncategorized

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