In Charity News, Fundraising

Why brainstrust?

I have a brain tumour. Grade 1, I am told. It is slow growing and non-invasive, however
anything inside the brain that shouldn’t be there can obviously affect and change your life in
a devastating manner. I live with the fear of further growth causing swelling on the brain and
the catastrophic problems this will cause.

I was diagnosed 7 years ago. I had to terminate my employment as an Administration
Manager 6 years ago as I was no longer able to cope both physically and mentally with the
pressures of the job and cope with the daily symptoms of the disease. I suffer chronic
fatigue, pain and terrible migraines. Due to the position of the tumour it is largely inoperable.
I am however on what’s called the ‘Watch and Wait’ programme. The neurosurgeon has
confirmed that it is growing and will continue to do so albeit at a slow rate, it will eventually
reach a state where part can be removed through gamma knife surgery. This would however
not remove all of it, just that part that is accessible.

Dealing with the shock of hearing this devastating diagnosis has been very difficult for me,
my family and my friends and it has taken a very long time to accept that my life has
changed completely, and I can’t do a lot of the things that I always loved to do.

I turned to social media and search engines for help, advice and as much information as was
available, and it was through this that I found brainstrust. They are a registered charity that,
among other things, provide a closed group forum offering support and networking for fellow
sufferers. They can rant, look for support or swap information on their own personal
experiences and symptoms. I have personally found the forum very helpful.

I looked at the charity itself and found that it is a small charity run by people who are living
with a brain tumour or have family or friends that do, and they give a personal touch whereas
some of the larger well-known charities while worthwhile, can lack this quality.

Making contact

It was during a particularly bad time for me that I felt I couldn’t speak to any friends or family
for fear of worrying them, so I decided to contact brainstrust to tell somebody else what I
was going through. Within less than 24 hours I received a reply that touched my heart and I
suddenly realised there was someone else there for me, who didn’t know me but knew what
I was dealing with. It was a pivotal moment and it was from that point that this charity began
to help me through my journey.

As part of their support I received a parcel through the post, a ‘brain box’. This box included
books, literature, a pink brain stress ball, a tea-bag (always good to sit and have a cuppa)
and various other items, all packed with help, tips, information etc. Within this box was a
book written by Dr Peter Black and is about all you need to know about the various types of
brain tumours and treatments that are available. It was a great comfort to me to read this
and to my husband who read it which I was happy about as he has struggled to accept the
diagnosis from the off.

Working with my GP, who has been fantastic also, brainstrust subsequently offered to fund a
private consultation at the National Hospital for Neurology and Neurosurgery. I remain under
the NHS with the NHNN and I have never felt more comfortable with my care and I feel that
whichever way this journey takes me, I am under the best care available to me and it was
because of brainstrust that this became possible.

I feel passionately about this charity and the valuable work they do to help people who find
themselves with this devastating and life changing illness. brainstrust are involved in
research studies and attend medical conferences. They support petitions to the government
for more research funding. At present, this particular cancer remains the least funded by the
government, however it sadly is one of the biggest cancer killers in children. One of
brainstrust’s drivers is to raise awareness of these types of tumour and to aid earlier
diagnosis.

Getting involved

I currently sit on the steering committee of a trial for patients with ‘atypical’ meningiomas.
They trial the differences between ‘watch and wait’ against treating with radiotherapy, with a
children’s hospital in the UK. I was approached by brainstrust to ask if I would be happy to
help, which of course I was and will remain on the committee as a ‘patients point of view’
until the end of the trial. Without this type of trial and research the slow and sometimes late
diagnosis can be catastrophic for some types of brain cancer and can be the difference
between life saving surgery and the opportunity to continue a normal a life as medically
possible.

I have worked with the lovely people that run this charity in jointly organising previous
successful charity events, the latest being a Music Festival at our local pub, The Spa. My
own lovely children have run half marathons and Colourthon 5K walks on behalf of
brainstrust. I would therefore like to continue give something back to those that give their
time to help others, so I am planning a large fundraising event for brainstrust to enable them
to continue their fantastic work behind the scenes and help and support the many people out
there struggling with a diagnosis. To give them the funds to give the sort of support they’ve
given to me, to many others that find themselves in need of the kind of assistance that I’ve
been lucky enough to receive.

The brainstrust Football Tournament

Through the events that I organised or attended and through the wider network that I
encountered, I realised that there were several people in our village that are either living with
or have had a brain tumour and very sadly there have also been several that have lost their
battle with this dreadful disease. I realised also that, as I had spent many of these 7 years
living through a very uncertain time and that even amongst a fantastic network of close
friends old and new, there were times when I felt terribly lonely, but they have helped me so
much I feel I must continue to repay their kindness in some way

So, the brainstrust Football Trophy 2018 was born. The Under 11’s Football Tournament
played for the trophy at Hockley Community Centre on Saturday 16th June 2018. It was a fantastic family day, for parents and children alike and most of all, a fun day for all. The facilities were perfect with a huge field for the football and a lovely area around this for stalls and fun games There was a bar area too with a flat screen TV, a BBQ and a Hog Roast, and we also ran a raffle. I’m so delighted that the Mini Soccer Tournament was a success, and we managed to raise an incredible £6,300 for brainstrust.

The help & support I got from my friends & family for the tournament completely overwhelmed me, I’m still speechless now as to how they all just threw themselves into the day. Even those that weren’t actually helping on the day turned up  to support me as most of them don’t have children of that age for the football! I spent most of the day fighting back the tears as I couldn’t believe the support I had from them. I am very lucky!
The emotion of the day will stay with me for a very long time!

Sharon holding the brainstrust Football Trophy

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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