In Charity News

Three of our amazing supporters Steve Gore, Innes Taylor and David Hamlett decided they wanted to do something HUGE for brain tumour support, as they all have friends who have been affected by a terrifying diagnosis.

The three chose to cycle the ‘Way of the Roses’ over the August bank holiday weekend- a route which travels from Morecambe through to York then over to meet the east coast in Bridlington and is approximately 170 miles long. Not satisfied with this though, they decided that they’d begin by cycling from Manchester to Morecambe, adding an additional 50 miles. 

So, in total, Steve, Innes and David cycled a massive 220 miles, with 9000 feet of climbing, and went on to raise an incredible £1,200 for our support service.

Chaps, you’re amazing. 

Steve has shared with us his (very entertaining) account of the cycle ride:  

Morecombe to Bridlington is a classic cycling route through some gorgeous countryside, and has been travelled by many cyclists over the years. Two fat fellers and a skinny experienced cyclist decided to ride it for brainstrust, as we all have to many friends currently suffering with Brain Tumours. So great idea but how to get to Morecombe to start it??? Answer cycle there! Seemed like such a good idea at the time but at 5am on Sunday the 30th of September I can assure you it wasn’t!

 

We set off in the dark, lights flashing and what can only be called a brisk English summer morning… one thing we did find out from the experienced cyclist was that if you stick newspapers up your shirt it keeps you warm!! Dave and I had never ridden further than 30 mile without a break so this first 50 was going to be tough, but we needed to get to Morecombe by 9am to give us any chance of arriving at our hotel in Pateley Bridge by 6pm. In the end it was a steady and pretty uneventful ride, other than Innes trying to push the tempo up, because I had told him the wrong mileage and he thought we were adding more on after Morecombe than we were. BUT everything went to plan and we sailed into Morecombe at 8.50 am some 3 hours and 50 minutes later… Not bad for two old fat blokes.

 

Breakfast in a greasy spoon was totally the wrong idea 30 min later we hit the road with a lead grease ball sitting in our stomachs, not good and it took an hour of riding to just get our systems to work its way through the fried bread and bacon. Suffice it to say we had a great ride through the back lanes of Morecombe and Lancaster, heading out to Settle where we would have our lunch break and start to prepare ourselves for what was going to be the hardest part of the route. The hills of Yorkshire…..

 

This is where it started to go a little wrong.. 72 miles in we are starting to feel the distance in our legs, lard gone from our stomachs and starting to run out of water. More great quiet country roads, and a sign ahead that says Settle 3 mile going left… But the route we are taking sends us right, in completely the opposite direction. A further 15 miles later and we are still three miles from Settle… essentially the route is taking us around and around settle to find the safest route in, we are basically settling into settle the way a dog lies on the floor. Around and around and around until finally the road runs into the town centre. 85+ miles or so and legs are definitely feeling the distance.

 

A quick lunch, fill the bottles then it is a battle with the cars to get out of the town centre… and then we start to go up! And I mean up! A 1 in 5 incline that stretches for what seems like forever out of settle up to the moors. The incline is so steep that if you sit on your sit the front wheel of the bike lifts of the road and you end up doing a wheelie… it’s so steep you can’t stop because if you get off your bike you can’t get back on! And at 2 mile an hour this stretch took almost 45 minutes to complete! Pain is not in it…. I have no idea how the guys do this sort of hill in the tour de France.

 

When we did get to the top, or what we thought was the top the scenery was spectacular, but then more hills, and more hills for the next 30 miles. The final gruelling A road just stretched on for what seemed like and age, but finally we started a long and dangerous high speed descent into Pateley Bridge our stop for the night. My on board stopped at 45 miles an hour with both of my brakes on, but Dave behind me had a minor panic as his brakes failed on the descent.

 

But we got there 111 miles and we arrived at the Crown Pub in the heart of Pateley bridge, great food, great rooms and beer.

 

Early night for us all and a little bit of a lie in as breakfast wasn’t until 8.

 

Sitting on the bikes the next day was somewhat painful and then of course straight out of the hotel and ….. you guessed it up hill. More damn hills… in fact the first 50 miles of this part of the route was almost as hard as the previous 111. After about 58 miles of amzing scenery we arrived at a little town called Stamford bridge, and a break at a little café there to try and dry out.. oh yes forgot to say Sunday RAIN! At this Café we met a couple of old people one in particular a lady called Maureen who was in her 80s recovered from a brain tumour and recently had a coronary… A brilliant lady who reached into her purse and gave us £10 for our efforts. Her friend an ex Beefeeter who had just turned 90 and was a spritely old chap donated as well so we met some great people who thought we were mad..

 

Back on the bike for the last 60 miles in what we thought would be flat riding but turned out to have even more hills…. The rain started to fade and we could see Bridlington in the distance and at 8 miles out we thought that our pain would soon be over.. But oh no! the designer of this route had us crisscrossing rail lines, and going in the opposite direction to signs directing us to Bridlington for a further 28 miles before our last down hill ride into the town and then the beach to get our photo by the sign and a well earned pint.

 

A long long ride, but worth it for a great cause, if we can help one person deal with cancer its worth it.

 

Thanks to Dave and Innes for making this a fantastic two days.

 

Steve Gore , sore old cyclist.

 

If you too would like to take on a challenge for brainstrust, so that we can support more people in the UK to feel less afraid, less alone and more in control in the face of a terrifying brain tumour diagnosis, then we’ll help you with it every step of the way. Visit our team brainstrust page to pick one of our challenges or simply get in touch with tessa@brainstrust.org.uk if you’d like to plan one of your own.

Brain Tumour Research joining us for Wear Grey for a DayCharity News
Wear Grey for a Day 2015Charity News

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