Volunteering

Giving your time, skills or support to brainstrust is a simple, fun but very important way that you can get involved and bring your talents or products to work for good.

I want to get my local community involved

Nominate brainstrust as ‘charity of the year’ at your local school
Click here to email us – we’ll be able to show you a sample letter, and help you work out who best to speak to.

Help run brainstrust shopping events in your area
We have some lovely things that people like to buy to support our work. You’ll also find that shops in your area might be keen to run shopping evenings for brainstrust. We can help you or friends and family to approach local shops, or arrange for brainstrust stock to be sent to you for your upcoming sale. To set the ball rolling, call us on 01983 292 405, or email hello@brainstrust.org.uk

Put brainstrust collecting tins in your local shops, pubs, cafes and post offices
Our collecting tins are fab. They’re like little volunteers in themselves, sitting there quietly waiting for donations. They just need a hand getting to the right place. To arrange for some tins to be sent to you, simply click here and drop us an email.

Contact supermarkets to ask permission to organise a collection
Supermarkets are a great place to spend money, and also to raise it. We can help you contact your local supermarket to find out about awareness and fundraising opportunities. To set the ball rolling, call us on 01983 292 405, or email hello@brainstrust.org.uk

Cheque collections
As much as we’d like to be, we can’t be in all places at once. So we need your help with cheque collections. Here you are our special brainstrust representative that collects cheques on our behalf at local events, often in front of the cameras. To find out more call 01983 292 405 or email hello@brainstrust.org.uk

Set up a stall at your village, school or church fete/Christmas fayre/Christmas markets to sell our merchandise, hand out leaflets, display posters and collect money
Fayres, fetes and markets are a great place for you to get our name and what we do out and about. If you’ve the opportunity to set up a brainstrust stall near you, then we’d love to hear more. Call us now on 01983 292 405 or click here to email us.

Contact your employer and local companies who may want to adopt brainstrust as their charity of the year
Many companies have a policy whereby the donate time or money to a worthy cause. If you think our work cuts the mustard, then have a chat with your employer about how you nominate a charity. We’re happy to come along and talk about our work too if your company requires a meeting. Let us know how you get on by calling 01983 292 405 or by emailing us.

Excite others about our cause
We love it when people talk about us. Got a packed social diary? Work in a busy office? Then why not tell some of your friends and colleagues about our work. Would you like us to send you some leaflets to get the conversation going? No problem. Call us on 01983 292405, or email hello@brainstrust.org.uk Go on, make our ears glow.

Organise an awareness day in the shopping centre/health club to hand out leaflets, display posters and collect money
Awareness days have really helped spread the word about our work over the past couple of years. Can you help us to get our name and what we do out and about? You and a group of friends can easily organise an awareness day in your local shopping centre, or gym to collect money and hand out leaflets. You’ll often meet more patients and carers and brainstrust supporters along the way too. For more information call us now on 01983 292 405 or click here to email us.

Talks to some of the fab fundraising groups in your area
Fundraising organisations like the Lions, WI and Rotary groups are responsible for much of our growth over recent years. These lovely people have held some super awareness and fundraising events for brainstrust, and if asked are often prepared to do more. Do you have a group in your area? Is a friend or family member part of one of these super organisations? Call us on 01983 292 405 or email hello@brainstrust.org.uk and we can help you get the conversation started.

Put our leaflets in your library/ health club/ surgery
You know that empty space on the reception desk at work? Or on next to the till at the gym? Oh, and that space on the notice board at your local surgery? Well they’ve been left there for our little leaflets. Having leaflets in visible places is a great way for people to find out about our brain tumour support work. Our leaflets need a hand getting to their new homes, and this is where you can help. To request some leaflets, simply call us on 01983 292 405 or email hello@brainstrust.org.uk

I want to help brainstrust patients and carers directly

By using volunteers in our day to day support work we can reach more patients and carers, and help them feel less lonely, better resourced and in control of their situation more quickly. Here are just some of the ways in which you can get involved.

Getting our resources out there
You’ll be visiting your local hospitals, GP surgeries, health centres, support centres and other good homes for our leaflets, booklets and other information resources. Stocks can run out quickly, so you’ll need to top them up regularly, as well as supply new resources as they are printed.

Be a buddy
Help a patient or carer in a similar position to you as they face up to the challenge of a brain tumour diagnosis. You’ll be using your personal experience to provide an ongoing source of help and support for someone in need as they navigate their brain tumour journey. You might be helping someone to prepare for their appointments, pointing them in the direction of useful resources, helping them to weigh up different treatment options, or simply being there to listen over a cup of tea when it’s most needed. Support may be given by telephone, email or social media as well as in the “real world” environment.

Share your professional expertise
Maybe you’re a trained coach or counsellor? Perhaps you’re a practising hypnotherapist or you’re experienced in some other complimentary therapy. You could be putting your services to great use by helping brain tumour patients and carers gain more control or cope better with their situation.

Help bring our community together
You’ll be helping create more opportunities for the brain tumour community to get together in your area. You might be researching and booking venues for a meet up, organising your own socials or activity, or maybe helping to arrange a day out for children and families affected. And with specific events for carers and our volunteers planned, there are plenty of opportunities for you to put your organisational skills to great use.

Be our special representative
Although we can’t be everywhere at once, we like to be where we’re most needed. In this role you’ll be representing the charity at conferences, meetings or awareness events. You might be chatting to health professionals about our work, giving a talk to a patient support group or running an information stand introducing visitors to our fantastic resources.

Join our production team
We’re constantly developing new and innovative resources to help people affected by a brain tumour, and we’re always on the lookout for people who’ve walked this journey to review our publications to make sure they’re as useful as possible to the brain tumour community. Or you might use your research skills to help us pull together information on the best sources of support for patients and carers in your local area.

Get involved with research
We know how important this is for improving outcomes for our patients and carers, and how important it is that researchers engage with our community. In this role, you’ll be making sure that the patient and carer voice is heard in the design and delivery of research trials.

Prefer to be behind the scenes?
As you’d expect in a busy organisation like ours, none of this would be possible without good support behind the scenes, and we’ve plenty of opportunities here too. If you’re good with a computer and like digging for information, you might enjoy doing some research for grants and trusts, uploading content to our websites or even stuffing the odd envelope!

If you’re interested in volunteering in any of the above areas please get in touch to find out more. Don’t worry, we won’t throw you in at the deep end! – we’ll make sure you’re equipped with everything you need and well supported to really get the best out of your volunteering experience.

Our vital work would not be possible without you. Click here to find out how you can help us through fundraising.

I’d love to get my work place to support brainstrust

Contact your employer and local companies who may want to adopt brainstrust as their charity of the year
Many companies have a policy whereby the donate time or money to a worthy cause. If you think our work cuts the mustard, then have a chat with your employer about how you nominate a charity. We’re happy to come along and talk about our work too if your company requires a meeting. Let us know how you get on by calling 01983 292 405 or by emailing us.

Excite others about our cause
We love it when people talk about us. Got a packed social diary? Work in a busy office? Then why not tell some of your friends and colleagues about our work. Would you like us to send you some leaflets to get the conversation going? No problem. Call us on 01983 292405, or email hello@brainstrust.org.uk

I want to get friends and family involved

Help run brainstrust shopping events in your area
We have some lovely things that people like to buy to support our work. You’ll also find that shops in your area might be keen to run shopping evenings for brainstrust. We can help you or friends and family to approach local shops, or arrange for brainstrust stock to be sent to you for your upcoming sale. To set the ball rolling, call us on 01983 292 405, or email hello@brainstrust.org.uk

Set up a stall at your village, school or church fete/Christmas fayre/Christmas markets to sell our merchandise, hand out leaflets, display posters and collect money
Fayres, fetes and markets are a great place for you to get our name and what we do out and about. If you’ve the opportunity to set up a brainstrust stall near you, then we’d love to hear more. Call us now on 01983 292 405 or click here to email us.

Grants and trusts research
Much of the work we do, including our brain boxes, and the brain tumour hub, is eligble for grant funding. But grant applications take time, can you help us with these? If you think you or a friend or family member can, then why not drop us an email – hello@brainstrust.org.uk, or call us on 01983 292 405

Run our “come dine with me” campaign
Fundraise and raise awareness with Food! We’ve a campaign that’s great fun and can help you to help us spread the word about our work to even more people.

Contact your employer and local companies who may want to adopt brainstrust as their charity of the year
Many companies have a policy whereby the donate time or money to a worthy cause. If you think our work cuts the mustard, then have a chat with your employer about how you nominate a charity. We’re happy to come along and talk about our work too if your company requires a meeting. Let us know how you get on by calling 01983 292 405 or by emailing us.

Organise an awareness day in the shopping centre/health club to hand out leaflets, display posters and collect money
Awareness days have really helped spread the word about our work over the past couple of years. Can you help us to get our name and what we do out and about? You and a group of friends can easily organise an awareness day in your local shopping centre, or gym to collect money and hand out leaflets. You’ll often meet more patients and carers and brainstrust supporters along the way too. For more information call us now on 01983 292 405 or click here to email us.

Talk to some of the fab fundraising groups in your area
Fundraising organisations like the Lions, WI and Rotary groups are responsible for much of our growth over recent years. These lovely people have held some super awareness and fundraising events for brainstrust, and if asked are often prepared to do more. Do you have a group in your area? Is a friend or family member part of one of these super organisations? Call us on 01983 292 405 or email hello@brainstrust.org.uk and we can help you get the conversation started.

Put our leaflets in your library/ health club/ surgery
You know that empty space on the reception desk at work? Or on next to the till at the gym? Oh, and that space on the notice board at your local surgery? Well they’ve been left there for our little leaflets. Having leaflets in visible places is a great way for people to find out about our brain tumour support work. Our leaflets need a hand getting to their new homes, and this is where you can help. To request some leaflets, simply call us on 01983 292 405 or email hello@brainstrust.org.uk

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 cancerousNon-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