In Charity News

team brainstrust logoThere’s been a LOT going on this year. So much so, it’s easy to gloss over some of the ‘detail’ and miss sharing with you some of the amazing feats that our patient and carer supporters undertake in order that we can continue to offer our unique and personalised support service to people affected by a brain tumour.

Here are just a few of the inspirational stories that occured in 2010, our year of adventure:

Charlie’s Jurassic Feat
Jonathan and Matt’s Worksop Workout
Keith, our knight in shining armour rides around Ireland
Daryl’s olympic hopes
Theresa and Graham’s 2010 Fundraising bonanza
Feeling inspirerd? Get involved!

Charlie Lane – Jurassic Coast Walk

Jurassic Coast Walking for charityCharlie (30) a former soldier from Welford, was diagnosed with a brain tumour in 2008. During surgery to remove his tumour, Charlie  tragically suffered a stroke. This has impaired Charlie’s speech, and he finds physical tasks tricky.

However, to show thanks for the support Charlie received from brainstrust, and to help us provide the same brain tumour support service to others in his situation, Charlie pledged to take part in a 14 mile trek, by foot, along Dorset’s Jurassic Coast.

Charlie, with his friend Kris Grzelak, raised an astonishing £2000 for our work. So guys, a huge THANK YOU from all at brainstrust. Not only will we spend the money wisely to grow our pioneering and proactive brain tumour support service, but we will always have your story in our minds – a glowing picture of positivity and enthusiasm in the face of adversity. The brainstrust fighting spirit!

If you’d like to follow in Charlie’s footsteps and take part in a Jurassic Coast trek in 2011, then please email us – tessa@brainstrust.org.uk, or give us a tinkle on 01983 292405.

 

Jonathan Mangham and Matthew Lee run the Worksop half marathon

Matthew and Jonathan ran the Worksop half for brainstrust after Matthew’s Dad, Keith was diagnosed with a terminal brain tumour last year, aged just 62.

Sadly Keith lost his life to his illness in August 2010. During Keith’s struggle, and following repeated searches for information Matthew and his family came across brainstrust, and in their words, they saw us as ‘an organisation [they] could talk to, who understood their plight, and understood that every question was important to them, even the most trivial. This is an organisation that truly helps. It gives people the tools to use the information they need and removes “jargon”, brainstrust has been [our] inspiration.’

Naturally, we’re delighted to have such glowing feedback, but having worked so closely with Matt and his family, we’re deeply saddened that Keith’s battle ended the way it did.

We know how much taking part in the Worksop half marathon meant to Matt and Jonathan, so as ever, we’ll be spending the funds that they raised in memory of Keith wisely, making sure that we’re helping others who are touched by this all too oftern devastating disease.

If you’d like to find out more, or sponsor Matt or Jonathan, then you can call us on 01983 292405 or visit either of their JustGiving pages:

www.justgiving.com/Jonathan-Mangham

www.justgiving.com/Matthew-Lee

Danny Warby, Toby Atling, Keith Knight for their cycle round Ireland – raising over £7,000

Brain tumour patient, Keith Knight from Brentwood raised a staggering £7000 for brainstrust by riding his bike 450 miles around the south west coastline of Ireland with two friends back in June.

brainstrust director, Helen, said of Keith’s adventure “We have supported Keith Knight, who has a brain tumour, and are truly moved that he wishes to demonstrate his thanks by riding 450 miles to raise much needed funds for brainstrust.  Our brain cancer community never ceases to amaze us!”

Keith Knight with friends Danny Warby and Toby Atling, also from Brentwood visited Killarney, Ballyheigue, Inch, the Dingle Peninsula, Waterville, Kenmare and Glengarriff on their mammoth trek.

Daryl’s Olympic Hopes

Daryl Gittins, brainstrust patient and all round legend, recently attended the trials for the British paralympic cycling team. But that’s not the only thing Daryl achieved this year.

When he isn’t occupied battling not one, but two brain tumours, Daryl is drumming up support for our cause in Wales. We tried to keep up with Daryl on the Merlin Bike Ride back in July, and he coerced a group of Hell’s Angels into raising money for brainstrust. In all, Daryl has been an inspiration to us at brainstrust, not just because of his incredibly positive outlook, but also because of his desire to pass his enthusiasm and experience on to others affected by a brain tumour.

Daryl has raised thousands this year for brainstrust and our work, but in sharing his experiences, he has provided invaluable motivation to many new brainstrust patients, helping them to regain control of their journey so that they can be sure they’re battling for the best outcome for their situation. Thank you Daryl!

Theresa and Graham Wadeson’s enormous 2010 fundraising calendar

An inspired idea; commited to our cause, Theresa and Graham decided on a calendar of events at the beginning of 2010, and in order to prevent people from getting fed up with visits from the pair waving their sponsorship forms, they combined all of their 2010 fund raising activities into one huge fundraising challenge!

Here’s the complete list of epic challenges that Theresa and Graham endured in 2010:

Relay for life, Portsmouth 17 July
Big Wight Matter, Isle of Wight 24 – 26 September
The Big Fun Run, Southampton, 9 October
Royal Parks Half Marathon, London, 10th October
Great South Run, Portsmouth, 24th October
Hellrunner, Longmore, 27th November
Eastbourne Santa Fun Run, 5th December.

brainstrust and our work is a cause very close to Theresa and Graham’s hearts, with Theresa undergoing chemotherapy for a reccurrent brain tumour. With their last event recently completed, can you help Theresa and Graham reach their £2000 fundraising target? When we checked just now, they were just £60 away from the mark! Click here to help them (and us!) through JustGiving.

Feeling inspired? Get involved!

So there we have it. Just a few of the spectacular feats accomplished in our ‘year of adventure’. team brainstrust logo

Next year, we’ve plenty planned, and if you feel inspired by these feats of daring do, then why not visit our events pages, give us a call on 01983 292 405 or email Tessa to find out how to take part in one or more of next year’s brainstrust adventures.

A little video about brain tumoursCharity News
Additional £25m for cancer testing – great news?Brain 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