In Brain News, Campaign News, Charity News, Press Releases, Research News

One year on since Tessa Jowell’s final speech to the Lords

Friends, colleagues and family gather this afternoon to remember Tessa Jowell’s “seminal and moving” final speech to the Lords.

On Tuesday 22 January, from 4.30PM, the Tessa Jowell Brain Cancer Mission and Tessa’s family will host a reception to commemorate the one-year anniversary of Dame Tessa Jowell’s speech in the House of Lords. MPs and Peers, friends and family of Tessa are attending what is expected to be both an emotional and celebrational event.

It has been a year since Tessa’s inspirational speech in which she called for ‘greater collaboration’ and the use of ‘adaptive trials’ to give patients access to innovative treatments. She said: “I am not afraid, but I am fearful that this new and important approach may be put in the ‘too difficult’ box.”

Since her speech, the Tessa Jowell Brain Cancer Mission has been formed, with brainstrust’s involvement, to develop a new national strategy for combatting brain tumours. The mission unites professional, patient, charity and government groups to work together to make a tangible change in brain tumour treatment and research. You can read more about what the mission looks like here.

Today’s reception sees brainstrust and the other members of the Mission share the progress that we have made in Tessa Jowell’s name.

  • We will welcome the recent launch of the Tessa Jowell BRAIN-MATRIX: a ground-breaking UK-wide trial aimed at increasing opportunities for brain tumour patients to try non-standard treatments. The BRAIN-MATRIX is being funded with a £2.8m investment from The Brain Tumour Charity and will be led by Professor Colin Watts, with brainstrust facilitating the patient and caregiver participation and input into the trial design.
  • Announce the creation of dedicated neuro-oncology fellowships, to train the next generation of world-class doctors in the UK. We are working with the group to ensure that the fellowships reflect what you need along the whole brain tumour journey. For example we know there is a desperate need for dedicated training for neuro-oncologists and those with an interest in palliative care, where we know that the needs of people with a brain tumour are so different to that of any other illness
  • Announce plans to improve the pathway of care for all neuro-oncology patients across the UK, ensuring that all patients receive the same high standard of care
  • Reveal plans to attract and train bright scientists, bringing new ideas and people to further grow the brain tumour research community

One year on…

Jess Mills (Daughter of Tessa Jowell) said: “It’s hard to comprehend that it is only a year since Mum’s seminal speech. The daily physical absence of her in my life is impossibly painful – but every day as we work on delivering her vision I feel her leadership guiding and leading us forward, always encouraging us to be more ambitious, courageous and uncompromising in the pursuit of achieving the best possible outcomes. We have achieved an extraordinary amount in just a year and that is just another huge testament to what a giant of leadership she is, even in her passing. As we celebrate all we have done and all that is to come, my heart is full with pride today, as I know Mums would be too if she could see the change we are creating together.”

Lord (Charles) Falconer (Labour Peer and close friend of Tessa Jowell) said: “Tessa’s speech a year ago this week was one of the most special and moving moments I can remember in Parliament. It is fantastic to see that Tessa’s bravery and determination to help other cancer patients is continuing to have an impact, and the launch of the first ever adaptive trial for brain cancer in the UK will undoubtedly save lives in the future. There is much to do, but Tessa would be immensely proud today, and we are all proud of her”.

Dr. Nicky Huskens (Director of the mission) said: “It has been remarkable to see how the mission has evolved over the past few months. I have seen incredible drive and energy from everyone involved and I am particularly pleased with how the charities in this space have come together to realise our ambitions. Tessa’s daughter Jess has given us invaluable leadership and support. She is inspirational to work with.”

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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