Our people

Our Leadership Team

brainstrust has a stable, experienced and committed leadership team who are aligned in delivering our mission and who are the strongest advocates of our ‘people first’ vision and values. Day to day the leadership team work to promote, develop and instil purpose, autonomy and mastery throughout the organisation through a ‘tight-loose’ approach which is manifested in tightly defined objectives for each member of the team, but loosely defined method. This allows people to work the way that suits them best to achieve the right goals for brainstrust and our beneficiaries.

 

Will Jones– Chief Executive

Will Jones, brainstrust

Will joined brainstrust as Development Manager in 2009, having worked in strategy and account management in the publishing and marketing sectors. This included 4 years at one of the UK’s largest independent communications agencies, collaborating with clients that included Action Aid; Seven Seas; Yorkshire Forward; Yorkshire Building Society; the Department for Children Schools and Families; and UK Trade and Investment. Will became Director of Development at brainstrust in 2011, and took on the broader responsibilities of Chief Executive in October 2016.

 

Dr Helen Bulbeck– Founder and Director of Services and Policy

Helen Bulbeck, brainstrustHelen is co-founder of brainstrust and has experienced cancer as both a patient and a caregiver. She leads our Support Team and is passionate about using her experience to support the thousands of patients who have brain cancer. Her 360-degree view means that she is well placed to understand the perspectives of patients, caregivers and health care professionals; these are her key drivers with whom she interacts daily. Her ethos of ‘none of us is as smart as all of us’ is a core value for her.

 

 

Kathy Springate– Head of Finance

Kathy has worked in finance for over 40 years, including 20 years in the Treasury Division of Lloyds Bank plc. She joined brainstrust in 2016 as Finance Administrator, and brings a range of experience to brainstrust working closely alongside the Trust Administrator to ensure the production of accurate & timely accounts conforming to the statutory requirements.

Our team

The leadership team support the wider team of brainstrust experts and specialists in delivering our vital work.

Carol Cochrane brainstrust

“Working for brainstrust is hugely satisfying. We’re there to support people at any stage on their brain tumour journey, and every day, I see and hear how much this support means. At brainstrust we all work together as a team with a common goal”

Carol Cochrane, brainstrust Support Specialist

 

 

Carol Cochrane – Support Specialist, High Grade Brain Tumours

Kieran Robinson – Communications and Community Fund Raising Assistant

Rebecca Cheriyan – Resources Officer

Jodie Eveleigh – Head of Support (presently on maternity leave)

Mariel Compton-James – Support Specialist, Low Grade Brain Tumours

Adam Thomson – Patient Involvement Officer and Impact Lead

Catherine Fitton – Designer

Eleanor Baker – Support Specialist, Low Grade Brain Tumours

David Lavelle – Communications Manager

Sandra Portas – Grants and Trusts Fundraising Manager

Steph Coffey – Senior Fundraising Officer

Ashley Hawkins – Fundraising Events Manager

Karen Egerton – Finance and Governance Officer

Our Trustees

‘We believe good governance is an essential component of our success, particularly as we grow. It underpins our integrity, reinforces the trust and confidence our patients and partners place in us, and contributes to a strong high-performance culture.’

Chris Baker, Chair of Trustees, brainstrust

 

Chris Baker – Chair of Trustees. Chris is Managing Director for Europe, Middle East and Africa at a global technology company and has over 20 years’ experience driving growth and managing change at some of the highest-profile software companies in the world including Microsoft, Salesforce, and SAP. Chris has a technology MSc from the University of Sussex and a BA(Hons) in Philosophy and Psychology from Keele University, and has has been Chair of Trustees at brainstrust for over four years.

Kevin Higgs – Kevin works in finance and has been a trustee for nearly 10 years. A chance meeting whilst at a previous employer, Kevin was immediately taken by the dedication and commitment of the charity to focus on the support and well-being of patients and families diagnosed with a brain tumour. Kevin knew immediately that he wanted to be a part of the “journey” that brainstrust has been on since 2006.

Stephen Warrington – Stephen brings to the organisation extensive experience leading professional services businesses and consulting for major multinationals. Stephen’s teenage son was diagnosed with a brain tumour and underwent successful surgery.

Puneet Plaha – Puneet is a consultant neuro-oncology surgeon in Oxford, with a specialist interest in brain tumours, especially endoscopic minimally invasive surgery and awake surgery. Puneet advocates for effective patient engagement with clinical research and he support brainstrust’s mission with PRIME, to ensure that the patient perspective is suitable acknowledged and valued so that ultimately more research can take place and be meaningful for the patient community.

Jack Jarvis – Serving British Army Commando, and record setting transatlantic solo rower, Jack brings tenacity, energy and a high-performance mindset to our board. Jack is an ardent and successful fundraiser, motivated by personal experience of a glioblastoma in his family, as well as his by his own experience navigating a complex rehabilitative journey after a serious accident. He understands the value, opportunity and impact that brainstrust’s work bears, and is our newest board member, joining in January 2024.

Stephen Venables, mountaineer and brainstrust patron. Photo taken on Mount Everest 1988 (c) Ed Webster

Our patrons

Peter Black, MD, PhD, FACS– Professor of Neurosurgery, Harvard Medical School, Children’s Hospital Boston and The Brigham and Women’s Hospital

Andrew McEvoy, MB, BS, BSc(Hons), MD, FRCS(Eng), FRCS(SN)– Consultant Neurosurgeon, National Hospital of Neurology and Neurosurgery

Paul Grundy, FRCS– Consultant Neurosurgeon, Wessex Neurological Centre

Stephen Venables– mountaineer, explorer, writer, broadcaster and public speaker

 ‘the brainstrust’ – Our patient and caregiver advisory panel

 All our work is produced collaboratively with our team of patients, caregivers and healthcare professionals, known as ‘the brainstrust’.

This team oversees and contributes to the development of activity and is a sounding board for new initiatives. This ensures that our activity is relevant and meaningful for our community.

Each information project on which we embark has its own team hand-picked from the brainstrust. These teams are formed carefully so that conflict of interest is avoided and so that the patients, their caregivers and clinicians with the most relevant experiences are called upon for insight.

Currently 46 experts give their time and expertise freely to ‘the brainstrust’: 23 volunteer members represent the clinical community; 12 are patients; and 11 are caregivers. The clinical community has a broad reach and includes the following roles:

Specialist nurse
Consultant neurologist
Medical oncologist
Consultant neurosurgeon
Scientific adviser
Clinical psychologist
Consultant palliative care specialist
Expert coach, consultant and trainer
Clinical fellow
Radiation oncologist
Clinical specialist radiographer
Psychotherapist
Consultant clinical oncologist
Professor of targeted therapy and oncology
Senior nurse specialist, stereotactic radiosurgery
Therapeutic radiographer
Advanced nurse practitioner, late effects
Teenage and young adult therapy radiographer

Our high profile supporters

Everyone one of our supporters is very special, but we also have a few that you might know:

David Gower- Cricketer and commentator

Tiff Needell- Racing driver and presenter

Alan Igglesden- Cricketer and patient advocate

Andrew Norris- Children’s author and TV screenwriter

Toby Jones- Successful actor and writer

Julie Walters- Actress and star of our Radio 4 appeal. Julie comes to brainstrust having experienced the effect that brain tumours can have whilst playing Mo Mowlem in the TV drama, Mo

Julian Fellowes – Baron Fellowes of West Stafford DL is a revered English actor, novelist, film director and screenwriter, and a Conservative Peer of the House of Lords. Lord Fellowes joined brainstrust at Knightsbridge Barracks as part of our ‘evening with’ series of events, raising over £20,000 for our work.

Julia Somerville – Newsreader Julia Somerville presents our 2016 BBC Lifeline appeal, and shares her own experiences of living with and beyond a brain tumour.

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.” – Gabby Allen

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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