In Brain News, Fundraising

The start

Over 7 days Graydon Downs, Ian Hardy, Dan Howard, and Richard Stewart tackled Hadrian’s Wall, on foot, to raise money for brainstrust’s work to help people living with a brain tumour. 

The team started their walk at Bowness-in-Solway on the West coast and trekked 84 miles along the length of Hadrian’s Wall to finish on Wednesday 2nd May at Wallsend, Newcastle.

The four men from the North East know all too well what life is like with a brain tumour, having all been diagnosed with aggressive and incurable brain tumours.

Walking against the odds

Ian Hardy, 52, from Gateshead, a former art teacher, Graydon Downs, 39, a commercial manager who lives in Sunderland, Newcastle boxer Dan Howard, 25, now a personal trainer were all diagnosed more than five years ago with grade 4 glioblastoma multiforme (GBM4) brain tumours, and Richard Stewart, 63, from Seaton Sluice was diagnosed nearly three years ago.

Richard Stewart fundraising for brain tumour support

Richard Stewart

The experience of outliving the prognosis for this type of brain tumour (the average life expectancy for this type of brain tumour is 12-18 months), has given the team an inspiring list of motives for completing the walk.

They said, “We have all had to learn to live with ongoing issues as a result of our brain tumours, ranging from the risk of having another seizure to balance, sight and speech problems, or in Dan’s case losing the use of his right side. But this doesn’t mean we’re housebound”.

Walking to inspire others

The group not only wanted to prove to themselves that they could complete the challenge, but also to inspire others. Ian says,

“Walking 84 miles along Hadrian’s Wall over the course of a week might not sound that hard-core to serious athletes, but some days we struggle to walk 20 metres as a result of our condition” “‘I hope we have done something for others, to inspire them to do something like this”.

Dan says, “Life is much more important than anything else we have. All we have done is catch it. We were supposed to be dead after 1 year. What we are doing here is catching life”.

Ian commented: “I have had brain cancer for the last seven years and been unable to work all that time. For the last five years, my time has been dedicated to numerous charities, including local community work and working with people affected by strokes.”

The recipe for success

And the key to success? It would seem to be the combination of good humour, Graydon’s singing, and looking out for each other. “We all looked after each other, it makes a big difference”,

Having conquered the length Of Hadrian’s wall, the group now feels well qualified to comment on the ultimate downfall of the empire, “the Roman empire would have been successful if they weren’t wearing sandals”.

The Three Tumours team

(L to R) Ian, Vincent, Graydon, Dan and Richard

And what’s next? Watch this space, but the group is quick to add that they are looking forward to a few days off from walking.

Incredible fundraising for the brain tumour community

At the time of writing, Ian, Dan, Graydon and Richard have raised an incredible £7,7000 towards their £50,000 target. The money is to be distributed between UK brain tumour charities to help people with incurable brain tumours live a better life, and to support work that keeps people living with the disease engaged with work and their communities.

‘Someone in our position sitting in a house, and they don’t know what to do next, to set a challenge for themselves that they can conquer. The main things is that all of this… is that it’s good to have a purpose. Everybody loses their self worth at this point. Setting yourself a challenge and completing it gives you purpose’

Dan Howard, 2018

To read more, or to show your support for this incredible team, visit https://uk.virginmoneygiving.com/Team/thethreetumours

www.facebook.com/TheThreeTumours

(Front to back) Dan, Graydon, and Richard

 

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New, routinely accessible brain tumour data to help people understand the impact of the disease.Brain News, Brain Tumour Data, Charity News, Press Releases, Research News
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New dashboard helps you understand brain tumours in England and WalesBrain News, Charity News, Press Releases, Uncategorized

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