In Fundraising

Sophie Rolf When four year old Sophie Rolf from the Isle of Wight developed a tremor in her left arm, her parents were immediately worried.

Although initially they went to their GP for advice, they were concerned enough to make a quick appointment with their emergency department at a local medical centre in May 2012. The doctor carried out a series of tests and concluded that Sophie needed to be referred to the paediatrics department. However, the two month wait for a referral appointment seemed too far away, so Sophie’s parents, Aaron and Gemma, took matters into their own hands and were seen almost immediately after phoning the department themselves.

10 week wait for MRI scan averted

Tests were conducted with results promised, and an MRI booked for ten weeks time. However, one morning little Sophie woke up and complained of seeing flashing stars and then later in the day, she said she could see two televisions. With some panic, Aaron and Gemma desperately tried to get an earlier scan and with much perseverance, and a wonderfully accommodating member of staff in the MRI department, Sophie was scanned that afternoon. This is when the real emergency started with the doctor explaining that Sophie had a brain tumour and needed to be transferred immediately to Southampton Hospital. The date was Monday the 11th June 2012.

On Tuesday Sophie had a stent put into her skull to drain the fluid that was causing the blurry vision and was kept in until the end of the week, was scanned again and then allowed to return home.

Sophie’s Diagnosis

Two weeks later the news came that every parent dreads – Sophie had a Supratentorial High Grade Bilateral Thalmic Tumour – an inoperable brain tumour and the prognosis with treatment was one to two years. A proposed course of radiotherapy and chemotherapy for six weeks was agreed as well as enrolling Sophie on a clinical trial for a new treatment not yet licensed in the UK.

Helping Sophie find her way

This devastating news for the family was greeted not by despair but by a desire to help Sophie to find her way through the treatment and the next few months so they immediately set up a fund with brainstrust to raise money for the travelling and associated expenses that would be incurred helping their little girl through this awful time. brainstrust works nationally, helping patients from the point of diagnosis with help, support, practical advice and a listening ear to patients and carers. We were able to help the Rolf family to access the correct medical professionals and are now helping to administrate the fundraising campaign for the family. Also hugely supportive are family friends Paul and Jo Blackley whose daughter is friends with Sophie – they have been instrumental in getting a website up and running and managing much of the valiant efforts to raise money.

Fundraising for Sophie

Within two weeks of the fund going live, over £12,000 in donations has been received and the family is stunned by the response. Sophie is coping really well with her treatment, is a bright and positive little girl and never complains or moans. Her parents are immensely proud of her and the smile on her face.

The fund is called KissyPuppy which is a special kind of kiss and cuddle that Sophie likes to give her big brother Jack (although he’s not so keen being 8 and very grown-up!) Sophie will be five years old on the 23rd August and the family would love to spread the word about her story and raise awareness of the importance of early diagnosis, of being kept informed of all the options surrounding brain tumours and to encourage others to seek help as soon as they can.

Help Sophie battle her brain tumour

To find out how you can help Sophie, and for more about her fund, please visit www.kissypuppy.co.uk, and to make a donation online, please visit www.justgiving.com/kissypuppy

If you would like to set up your own fund, then give us a call on 01983 292405 or email hello@brainstrust.org.uk To see some of the funds that are currently raising money under our umbrella, please visit www.brainstrust.org.uk/little-ships.php

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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