Our collaborations and partnerships

Our ethos is that ‘none of us is as smart as all of us’. Meaningful collaboration and co-creation is a key component of our approach as we work to secure the best outcomes for anyone who is living with a brain tumour. This page is dedicated to highlighting and celebrating the collaborative work we are engaging with. It’s thanks to these effective partnerships that we are able to make such a difference. Find out more about the impact our work is having here.

If you’d like to support our work please get in touch with us on hello@brainstrust.org.uk or 01983 292 405.

Our funding partners

Garfield Weston Foundation

We are proud to be a charity partner with Garfield Weston Foundation. The foundation is generously supporting our core costs with a grant of £30,000 this year.

A family-founded grant-maker, in the most recent financial year Garfield Weston Foundation gave away nearly £90 million to over 1,980 charities across the UK.

Find out more about Garfield Weston Foundation.

The Rank Foundation

PRIME Partner: The Rank Foundation

We are proud to be a charity partner with The Rank Foundation and to be a member of the RankNet community. The foundation has generously supported brainstrust over many years, helping us to develop leadership and innovative approaches. Most recently, a Golden Award grant of £20,000 has helped us to expand our proven coaching services and develop new tools to help people with brain tumours to become co-pilots in their care.

The Rank Foundation is a philanthropic organisation and the charitable legacy of Joseph Arthur Rank (1888-1972).

Find out more about PRIME | Find out more about Thrive | Find out more about The Rank Foundation

Edward Gosling Foundation


We are proud to be a Charity Partner with The Edward Gosling Foundation. The foundation helped us to navigate the Covid-19 pandemic and is now generously supporting our essential frontline services with a grant of £25,000 this year.

Click here to find out more about the Edward Gosling Foundation.

The National Lottery Community Fund

The National Lottery Community Fund, the largest funder of community activity in the UK, has granted us £9,995 through Awards for All England to deliver ‘health and wellbeing events for the North of England brain tumour community‘. These events will connect our community and offer a supportive space for people affected by a brain tumour to increase their well-being and learn effective coping strategies. They have also granted us £10,000 towards the core cost of our brainstrust service in Scotland, this grant will support the service for 12 months, ensuring we can be there for everyone in Scotland who needs us.

Naseem’s Manx Brain Tumour Charity

Our PRIME service is supported by Naseem’s Manx Brain Tumour Charity who have granted brainstrust £10,000 to help grow and scale PRIME’s integral patient involvement work. This funding will help PRIME continue to support the design of brain tumour clinical trials.

Naseem’s Manx Brain Tumour Charity supports Isle of Man residents who are suffering with a brain tumour by way of giving them financial support and providing the latest information about brain tumours.

Find out more about PRIME | Find out more about Naseem’s Manx Brain Tumour Charity

Moondance Foundation

We are delighted to have funding from the Moondance Foundation to support our dedicated service in Wales. The Moondance Foundation is a family charitable foundation set up in 2010 by Diane Briere de l’Isle and Henry Engelhardt to further their family’s philanthropy and giving with a focus on activities in Wales.

Click here to find out more about the Moondance Foundation.

The Hospital Saturday Fund

We are delighted to have the support of The Hospital Saturday Fund. The fund is supporting the running costs of our 24/7 support and unique high impact coaching service to people living with a brain tumour diagnosis with a grant of £2,000 this year.

Find out more about The Hospital Saturday Fund.

Hodge Foundation

We are delighted to have received a grant from the Hodge Foundation towards our specialist support service for people living in Wales. Established in 1962 by Sir Julian Hodge, the Hodge Foundation supports projects that have effective solutions to helping those most in need.

Find out more about the Hodge Foundation here.

Collaborations across the charity sector

Brain tumour research


Brain Tumour Research are collaborating with brainstrust to accelerate the work of brainstrust‘s Patient Research Involvement Movement (PRIME). PRIME puts people affected by a brain tumour diagnosis at the heart of clinical research studies. This growing programme strengthens the quality of research applications and has helped researchers to attract over £17m funding to date.

“Our vision is to find a cure for all types of brain tumours and brain tumour patients are at the heart of everything we do, to this end we are very keen to enable meaningful conversations between researchers and patients We are extremely pleased to be investing in this important collaboration which will help the brain tumour community to feel more involved in shaping the future of research.” – Dr Karen Nobel, Director of Research, Policy and Innovation

Find out more about PRIME and our partnership with Brain Tumour Research.

Tessa Jowell Brain Cancer Mission

We have enjoyed our continued support of the Tessa Jowell Brain Cancer Mission (TJBCM).  brainstrust provides financial support to the mission’s work, and our chief executive, Will Jones, shares our experiences, insights and the voices of our communities through his role on the Join Strategy Board of TJBCM.

Macmillan Horizon Centre

Our collaborative work with Macmillan Horizon Centre, based in Brighton, plays an important role in our regional support for London and the South East. Working with Macmillan Horizon Centre on the delivery of workshops, events and support groups for people affected by brain tumours has allowed us to provide the best support possible to local community.

Find out more about the Macmillan Horizon Centre.

Further collaborations

We are actively involved in Cancer52 network of charities; we represent children and young people with brain cancer through our role on the steering group of the Children and Young People with Cancer Coalition; and we work closely with Cancer Research UK on matters relating to brain cancer and clinical research.

Organisational partnerships and collaborations

We work with a broad range of companies outside the health and charity sector. These relationships enhance our capabilities, capacity and expertise, and they all contribute meaningfully to our mission and our impact. We would like to express our specific appreciation to:

  • Anaplan
  • Baker McKenzie
  • Charisma Charity Recruitment
  • Class Networks
  • Eric Callister
  • Google UK
  • Harrison Black
  • Irene Clark
  • J Pullan & Sons
  • Louise Baker
  • McQueenie Mulholland
  • Nifty Communications
  • Salesforce
  • Smarter Not Harder (SNH)
  • TechSoup
  • Think Creative Consultants Ltd
  • Thrive
  • Tim Colman
  • Vicki Munro

Patient-focused partnerships

Patient Information Forum

In partnership with the Patient Information Forum we can provide robust, trustworthy and understandable information for people with a brain tumour.

Find out more about the Patient Information Forum here.

Jersey Brain Tumour Charity

Together with the Jersey Brain Tumour Charity, we are providing Brain Boxes and resources to people diagnosed with a Brain Tumour on the Island of Jersey. These people face unique challenges with isolation and complex care pathways where travel is required to the mainland UK.

Click here to find out more about Jersey Brain Tumour Charity.

Brain Tumour Support New Zealand

Recognising the need to reduce duplication of effort at a global level, we support the charity Brain Tumour Support New Zealand with the production of reliable, trustworthy and accessible brain tumour patient information so that people with a brain tumour in New Zealand can feel more in control on their journey.

Click here to find out more about Brain Tumour Support New Zealand.

Use MY data

We are working with Use MY data to build confidence in the use of patient data to save lives and improve outcomes for people with a brain tumour.

Click here to find out more about Use MY data. 

Neurological Alliance of Scotland

brainstrust is an active member of the the Neurological Alliance of Scotland, and Carol Cochrane, brainstrust’s Support Specialist for Scotland, acts as a trustee and  member of the executive who oversees governance of the Alliance.

The Neurological Alliance of Scotland is an umbrella body of organisations that represent people with a neurological condition and those who support them. By working together we can ensure that the issues facing people living with neurological conditions are understood, and that services are improved.

Find out more about the Neurological Alliance of Scotland.

Collaborations with the clinical community

We work with associations that include BNOS, EANO and the SBNS so that patient voice informs the clinical agenda, and so that clinical expertise is easier to access and understand for the brain tumour patient community.

Find out more about BNOS | Find out more about SBNS | Find out more about EANO

National Cancer Research Institute

In partnership with the National Cancer Research Institute (NCRI) we are bringing people with a brain tumour closer to research, and research closer to patients.

Click here to find out more about NCRI.

Influential and high profile ambassadors

World Record holder Jack Jarvis

In December 2021 British soldier Jack Jarvis embarked on a world record breaking row to raise money for brainstrust. The challenge – dubbed ‘United We Conquer’ – was taken on in memory of his late grandfather, who he sadly lost to a brain tumour in 2007. Jack raised over £70,000 for brainstrust and helped spread vital awareness of our services.

Jack continues to support brainstrust work, getting involved in raising awareness across his platforms and supporting brainstrust campaigns such as Wear Grey.

Read more about Jack’s epic row for brainstrust.

jack-gwr-2

Sammy Taylor

Sammy discovered brainstrust after being diagnosed with a brain tumour, and the experience led her to become a long term supporter of our work.

It got so much that I didn’t know who else to turn to and I reached out brainstrust one night because I just needed someone to offload to. It restored my faith in humankind completely. Jane from brainstrust contacted me to say she’d been thinking about my case more and to help me make this decision a little easier they will pay for me to have a consultation with Andrew McAvoy – a world leading neurosurgeon, also voted best brain surgeon in the UK.

It has changed the way I view fundraising and charities forever, seeing first-hand what a huge difference it can make.

Sammy’s business Beauty in the Brain donates 10% of all profits to brainstrust and Sammy continues to use her platform to help raise awareness of brain tumours and brainstrust services.

Read more about Sammy’ s own experience of living with a brain tumour here. | Visit Beauty in the Brain.

sammy bitb pic

Gabby Allen

Reality TV star and fitness instructor Gabby Allen knows first-hand the benefit of brainstrust support, as her father, Mike, was diagnosed with a GBM in 2012. He reached out to brainstrust to get support for his family:

“brainstrust were so helpful with my dad – they knew it wasn’t just about him and his illness, but how it affected everyone around him as well. That’s what my dad loved about the charity, it was a whole family matter, and it was about the person, not the patient. So he trusted them enough to know that we weren’t on our own.”

Ravi Adelekan

At age 7 Ravi Adelekan was diagnosed with a non-malignant tumour on his brain stem, Ravi underwent surgery that partially removed the tumour and he continues to live with the side effects today. brainstrust supported Ravi and his family throughout his aftercare. To mark the anniversary of his surgery Ravi recorded a charity single to help all children with a brain tumour get the help they need. Ravi donated half of all funds raised to brainstrust and helped raise a huge amount of awareness around childhood brain tumours.

Find out more about Ravi’s Dream.

Ravi Adelekan

Work with us

Partnerships and collaborations are vital to our mission to build a better world for people affected by a brain tumour. If you’d like to work with us, please get in touch. Email: hello@brainstrust.org.uk Call: 01983 292 405

Keep up to date on how you can change lives for people living with a brain tumour.

Our impact

Our work is driving an 18% increase in the wellbeing of people we support.

Find out more about how we’re securing better outcomes for people living with a brain tumour.

Visit our impact page

Stay up to date with the latest news

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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