In Brain News, Press Releases

Two more NHS brain tumour centres obtain Tessa Jowell Centre of Excellence status

Excellence status has been awarded to Barts Health and the Liverpool Network, joining nine other UK NHS neuro-centres as Tessa Jowell Centres of Excellence.

The centres underwent an extensive assessment process and were assessed on a range of criteria including excellent clinical practice, emphasis on patient quality of life, staff training opportunities and the ability to offer research opportunities to patients. Both centres passed a rigorous review conducted by an expert assessment committee which was discussed during virtual site visits.

brainstrust Chief Executive, Will Jones, said:

Against the backdrop of a global pandemic that has exerted extraordinary pressure on health systems we should congratulate, unreservedly, the teams that have continued to strive for excellence in brain tumour care. It is fantastic that there remains such broad clinical support for this scheme. Even better, that two more NHS centres have achieved Centre of Excellence status. This is a vital programme to improve care, experience and outcomes for our too-long neglected community. We look forward to the day when all centres are Centres of Excellence and at brainstrust we will continue to support clinical teams who are working towards this goal. We need excellence everywhere. 

Dimitrios Paraskevopoulos, Neurosurgeon from Barts Health welcomed the announcement and said that:

“We are thrilled that Barts Health has been designated as a TJ Centre of Excellence. This acknowledges the hard work and dedication in our team to provide excellent patient-focussed care to a diverse population. We are able to provide strong links with basic cancer research and access to clinical trials, cutting edge treatment as well as rehabilitation support. We look forward to working with the Tessa Jowell Academy to provide even more opportunities for our patients and share our expertise.”

What does it mean?

The “Excellence” status provides reassurance about the availability of excellent care within the NHS and positive recognition for its staff who, despite the challenges of the Covid-19 pandemic, continue to go above and beyond for their patients.

Founded in 2018 to lead a new national strategy for brain tumours, the Tessa Jowell Brain Cancer Mission has led the national assessment and is committed to help all UK centres achieve “Excellence” status in the future. The 28 of 30 UK Brain Tumour Centres have by now participated in this extensive review; 11 have obtained Excellence status and the remaining centres are currently working hard to obtain this status as soon as possible.

Following recommendations of the assessment committee many previously assessed centres have already made considerable improvements and are expected to obtain excellence status in 2022.  Improvements made include increasing access to rehabilitation and psychological support services, recruiting additional staff members, developing pathways for tumour biobanking and widening access to research opportunities for patients. TJBCM stressed that all UK Brain Tumour Centres who participated in the review provide safe and good care, meeting national guidelines.

The Tessa Jowell Academy

Barts Health, Liverpool and the other Centres of Excellence are expected to take a leading role in the Tessa Jowell Academy, which is launching early 2022. The Academy will be a new national learning and networking platform for brain tumour specialists to share cutting edge knowledge between centres, to support the improvement of services. It is hoped that with the support of the Academy more centres will qualify for excellence status in the future, extending the reassurance of excellent NHS care more broadly and ensuring no patient is left behind.

Prof Kate Bushby, who led the assessment said:

“I am thrilled to announce two new Centres of Excellence who each demonstrated unique areas of excellence from which patients benefit. Throughout 2021, we have witnessed first-hand how centres have been increasingly sharing information and are innovating how they provide patient care. I look forward to seeing this upward trajectory continue over the next few years and see how patients and their families will have access to ever improving care”

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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