In Charity News, Press Releases, Uncategorized

“Tessa Jowell Brain Cancer Mission reveals its exciting plan to award outstanding neuro-oncology centres ‘Tessa Jowell Centre’ status within weeks – recognising centres who offer excellence in brain tumour treatment and aligned research with a strong focus on quality of life care”.

Today, two years on from Dame Tessa Jowell’s passing, Tessa’s legacy remains strong as the Tessa Jowell Brain Cancer Mission (TJBCM) announces its plans to found a national network of Tessa Jowell Centres of Excellence for brain tumour treatment and care in adults. This initiative is driven by, and for, the community of people living with a brain tumour, health professionals and scientists who have worked together to define, identify and promote excellence.

During the final year of her life, Tessa was diagnosed with a glioblastoma, one of the most aggressive brain tumours in adults. Over one hundred thousand people are currently living with a brain tumour in the UK and each year 11,400 new patients are diagnosed with a primary brain tumour. Only a quarter of those diagnosed with a glioblastoma survive more than a year. Equality of access to outstanding treatment, care and research was the call to arms Tessa ignited in her final parliamentary speech in Jan 2018, just three months before she died. Tessa suggested that all patients should benefit from “the latest and greatest science” and called on us to focus on “living well with cancer, not just dying from it”. This seminal speech received the first ever standing ovation in the House of Lords.

This exceptional call to action united the brain tumour community, galvanising overwhelming support from government, clinicians, scientists, charities and people living with a brain tumour. Together, they are realising Tessa’s dream by establishing the TJBCM and bringing excellence to as many patients as possible through the Tessa Jowell Centre Network.

Tessa Jowell’s daughter Jess Mills, who has been closely involved in designing the Tessa Jowell Centre Programme, said that “The delivery of the Tessa Jowell Centres will be a huge moment in delivering my mum’s call to action through setting a new benchmark for the outstanding delivery of care for brain cancer patients. I have been touched to see everyone work together so efficiently and have been inspired by eagerness of the brain tumour community to collectively step up and raise the bar.”

How it works – Excellence in every step of the patient pathway

Pockets of excellence are established across the UK: one hospital may have state of the art brain imaging facilities; another may have excellent and tailored rehabilitation facilities. But few centres excel in each and every step of the patient journey; as a result, many patients across the UK miss out on innovative treatment.

Based on extensive research, the TJBCM has identified and defined high standards for every step of the patient pathway, ranging from clinical care and patient quality of life through to access to innovative clinical trials. Following the launch of the programme, UK hospitals will be able to apply to take part in the rigorous assessment process to become a Tessa Jowell Centre. Hospitals that meet the standards will be awarded ‘Tessa Jowell Centre’ status. For hospitals, this award will mean that their staff will be congratulated and recognised for going ‘above and beyond’ for their patients.

For people living with a brain tumour, the award will provide reassurance that they will receive the best possible brain tumour care in those centres – for their entire pathway. The increased transparency as a result of the awards will help people to decide where to go for their treatment. Importantly, Tessa’s call was very much about bringing equality to ‘all patients’: We envisage that more and more hospitals will step up to raise the standards of the treatment they offer. As a result, a growing number of patients will be able to benefit from excellence in every step of the patient pathway.

Professor Richard Gilbertson, the Chair of the TJBCM said “this grassroots initiative has gained huge momentum over the last few months. I am delighted by the enormous interest shown already by NHS Trusts across the country who are stepping up to join us in responding to Dame Tessa’s call to action. We are currently piloting the process in a small series of Centres and we anticipate that over the next months, more and more Trusts will follow. We believe that this initiative will be a major step forward in transforming the care of patients with these underserved cancers”.

The initiative has benefitted from the leadership of a very experienced Chair, Kate Bushby (Emeritus Professor of Neuromuscular Genetics at Newcastle University). As former Vice Chair of the European Union Committee of Experts on Rare Diseases, she has extensive national and international experience in setting up centres of excellence in rare diseases. Recently, her husband sadly died from the same tumour as Tessa, and she has come out of retirement to apply her experience in overseeing the process of bringing excellence to brain tumour patients. Reflecting on the process, Katie said “It is well known that concentration of expertise and sharing of best practice leads to better outcomes for patients. When defining and setting the standards we were always thinking ‘is this good enough so that I would confidently send my own family member there for treatment?’ If the answer to the question was yes, then we included this in our standard”.

Collaborating with the NHS and charities

The team has worked in close collaboration on the initiative with the NHS. Professor Peter Johnson, The National Clinical Director for Cancer at NHS England said: “Brain tumours are among the most challenging to treat cancers. Partnership between the NHS and the Tessa Jowell Brain Cancer Mission to found the Tessa Jowell Centres, represents an enormous step forward in ensuring equality and excellence in care for patients across the UK, wherever they live.”

Helen Bulbeck, Director of policy and services at brainstrust – the brain cancer people said: “Before we are patients, we are people. We are so privileged to be part of this initiative. It means that people will be able to have the wraparound care they need and to which they are entitled, so that they can have their best possible day, no matter where they are on the brain tumour pathway.”

Catherine Fraher, Director of Services at The Brain Tumour Charity, said: “Our community wants everyone affected by this shocking and life-changing disease to have an exceptional standard of treatment and support, no matter where they live in the country, no matter what type of tumour they have. Equal access to treatment and care has been a central strand of our strategy to double survival and halve the harm caused by brain tumours. Driving excellence through the Tessa Jowell Centres status will help deliver that sooner. The Brain Tumour Charity’s community stand together with the Tessa Jowell Brain Cancer Mission to back this initiative that will drive change for everyone affected.

TJBCM is supported by the Department of Health and Social Care and brings together leading clinicians and academics, Cancer Research UK, The Brain Tumour Charity, Brain Tumour Research and brainstrust, amongst others.

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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