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Tessa Jowell Centre of Excellence logoWith 12,000 people diagnosed with a brain tumour every year, and with March being UK Brain Tumour Awareness Month, there has never been a more important time to recognise the work of the teams that have helped patients through their brain tumour journey

  

  

More on this announcement

  • The newly introduced ‘Tessa Jowell Centre of Excellence status’ recognises the delivery of outstanding care and treatment by NHS staff in their efforts to provide above excellent patient care through a difficult time
  • Three years ago, Baroness Tessa Jowell gave her powerful speech in the House of Lords recognising the need to improve brain tumour treatment, care and survival for all patients
  • Brain tumours are often found at later stages; only 12% of adults survive for five years after diagnosis highlighting the need for further innovation in brain tumour care
  • The mission is delighted to be embarking on the pathway to excellence with the 20 applicant centres, nine of whom have already achieved centre of excellence status in the first round.

 

Nine NHS hospital brain tumour centres across the UK have been recognised as a Tessa Jowell Centre of Excellence following the first round of rigorous expert-led assessments by the Tessa Jowell Brain Cancer Mission.

With more than 12,000 people diagnosed every year with a primary brain tumour in the UK, the award has been introduced to recognise hospitals for their excellence in patient care. It represents a step change in the neuro-oncology landscape across the UK. Centres were measured on a range of criteria including excellent clinical practice and training opportunities; emphasis on patient quality of life; providing clinical trials and offering a high standard of research opportunities. Led by a committee of experts in the field and virtual site visits, the assessments were backed up by patients, validated by those who are living with a brain tumour diagnosis.

At least 88,000 British people are currently living with a brain tumour and over 5,000 people a year will lose their lives to it. 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. As a result, centres are increasingly adapting to the challenges of Covid-19 and are now offering virtual clinics for their patients.

Founded to design a new national strategy for brain tumours, the Tessa Jowell Brain Cancer Mission is committed to helping as many hospitals as possible achieve “Excellence” status in the future. To achieve this, the mission is launching the Tessa Jowell Academy, a national platform allowing hospitals to share best-practice to improve their services, as well as one-year fellowships for doctors to further specialise in brain tumours. 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.

Jess Mills and Tessa JowellJess Mills, Co-Founder of the Tessa Jowell Brain Cancer Mission and Tessa’s daughter, said: “Mum’s mission throughout 50 years of her political life was to tackle systemic inequality. So, it was tragic whilst fitting, that her final campaign was a call to arms to create universal equality in access to excellence in cancer care throughout the NHS. It is with immeasurable pride that just 3 years later, the Tessa Jowell Brain Cancer Mission has begun the real-world translation of that vision into reality. 

 

“We are thrilled to have awarded nine centres for their excellent ongoing work for patients and commitment to support other centres in reaching the same level of Excellence. Shockingly, the UK still has one of the worst cancer survival rates in Europe, but in time, the Tessa Jowell Centres will make the UK a global leader in the treatment and care of brain tumour patients. We have a long way to go until the cutting edge of science is delivered to every patient, but this is a huge and transformational first step.”

 

Which hospitals have been successful?

Tessa Jowell Centres of Excellence:

  1.  University Hospitals Birmingham NHS Foundation Trust
  2. Edinburgh Centre for Neuro-oncology
  3. King’s Health Partners / King’s College Hospital & Guy’s and St Thomas’s Hospitals
  4. Leeds Teaching Hospitals NHS Trust
  5. Salford Royal Foundation Trust and The Christie
  6. Newcastle upon Tyne Hospitals NHS Foundation Trust
  7. Nottingham University Hospitals
  8. St George’s University Hospital, Royal Marsden Hospital and Royal Surrey County Hospital
  9. University College Hospital London NHS Foundation Trust

Over £700M is spent on cancer research in the UK every year, yet less than 2% of that is dedicated to brain tumours. The Mission, which will be supported by the All-Parliamentary Group on Brain Tumours chaired by Derek Thomas MP, is calling upon further support for NHS centres to enable more of them to achieve “Excellence” status in the future.

5 key points for TJBCM centresProfessor Richard Gilbertson, Chair of the Mission, highlights: “When we put out a call to apply, we received an overwhelming and enthusiastic response from the community. There was a real sense of pride from NHS staff about the service they have been providing and how they strive to provide the very best care for patients, even in the midst of a pandemic.

All of these centres excelled during their rigorous assessments in 5 key areas. They deliver excellent treatment; have an emphasis on patient quality of life; offer opportunities to engage with brain tumour research and trials; provide good training and development opportunities for staff; and they are site for excellence and innovation in brain tumour research.

What does it mean if my hospital isn’t one of the nine centres? 

First of all, not every hospital was ready to apply with many deciding to defer their application because of the pressures of COVID-19 on care. For many, this has taken precedent.

Professor Richard Gilbertson also says:

All applying hospitals were working to provide best care and we will be supporting those not yet ready for Centre of Excellence status to enact best practice across all areas. We will use the evidence collected from the applications forms to make a strong case to further equip these centres.”

Will Jones, Chief Executive at brainstrust and TJBCM Joint Strategy Board member adds:

We should all be excited about the change that this represents, no matter which hospital is looking after us. The challenge now is manifold as we strive together as a community, for the community, to move every UK centre that treats people with a brain tumour from good to great.

The hope is that every centre can become a centre of excellence. In the meantime, care across the UK at all hospitals is safe and it is good. If you have any questions or concerns then speak to your clinical team, or call us at brainstrust and you will get the help you need.

The brain tumour patient guide to care and treatment

Today, right now, you can already see if your hospital is delivering a standard of care to NICE guidance, and also get help with what to expect on your journey by reading the brainstrust patient guides. More on these here: www.brainstrust.org.uk/patient-guides/

The NICE guidance in itself sets a bar for excellence. 

 

What do the hospitals say?

Cally Palmer, NHS England national cancer director, sets the scene “This award is a fitting tribute to Tessa Jowell and her dedication to excellence in cancer care, as well as to all the NHS staff who have worked tirelessly throughout the pandemic to continue to provide life-saving cancer services, and it is great to see NHS hospitals across the country being recognised as centres of excellence.

“NHS services are open and ready to help those who need cancer care, and I encourage anyone who is experiencing any worrying symptoms to contact their GP immediately to improve chances of a successful recovery.”

 

Birmingham Queen Elizabeth Hospital

We are delighted that our model of patient-centred, consultant-led, research-orientated care for brain cancer patients has been recognised in this way. This award is a tribute to the whole multidisciplinary team who put patients at the centre of everything they do and take real pride in delivering best practice for everyone.  Prof. Colin Watts – Chair Birmingham Brain Cancer Program and honorary consultant neurosurgeon

 

Leeds Teaching Hospitals Trust

We are immensely proud of the excellent care delivered by the whole neuro oncology team in Leeds and very pleased to be able to contribute to a national effort to improve the experience of all brain tumour patients through designation as a Tessa Jowell Centre of Excellence ‘ Prof Susan Short – Professor of Clinical Oncology and Neuro-Oncology

 

King’s College Hospital and Guy’s and St Thomas’

“Designation as a Tessa Jowell Centre of Excellence is an immense honour and privilege for my team and I. It reassures and reinforces the team to continue on their chosen path to provide excellent care; it builds confidence in the service for our patients; and it provides us with the legitimacy to fight for resources we believe are needed even harder to do even better for our patients; after all they deserve nothing less.”

Prof Keyoumars Ashkan, Professor of Neurosurgery and Clinical Lead for Neuro-Oncology)

 

Newcastle Hospitals

“This fantastic honour will mean so much to the patients of the North East and Cumbria knowing that they are receiving care in a centre of excellence. The wider Newcastle/North East neuro-oncology team are delighted that there is recognition of their efforts to provide such a high standard of care. 

“It is the Geordie “shy bairns get nowt” tenacity of so many members of the team that has resulted in the holistic, integrated multi-disciplinary care pathway for patients and specialist interventions such as bevacizumab for symptomatic radiotherapy effects.

“We look forward to supporting the Tessa Jowell Brain Cancer Mission in its aim to promote excellence in care for brain tumour patients and assisting the Tessa Jowell Academy in disseminating evidence of great practice. No one unit gets everything right all the time so we know there is a lot we can learn and hopefully help other units too.”

“To be designated by the Tessa Jowell Brain Cancer Mission is a great honour for the team,” adds Dr Joanne Lewis, Consultant Clinical Oncologist at the Freeman Hospital’s Northern Centre for Cancer Care. 

“The recognition of our “human centred culture of kindness and compassion” was the highest compliment we could have wished for. I am excited by the opportunities we have to push forward change for brain tumour patients, we are also keen to adopt best practise and learn from the Tessa Jowell Academy. This award has made us even more determined to give our patients the best possible care.”

Damian Holliman, Consultant Neurosurgeon and Neuro-oncology MDT Lead

 

 

What happens next?

There is a road map here for excellence to become the norm. This is an important moment for the brain tumour community no matter who or where you are in the UK. We should first congratulate these first 9 centres and with the community’s continued support in not too many years to come, the gold standard should become the normal standard – people with a brain tumour can be confident that they will be getting the best possible care so that they can live their best possible lives in the face of their diagnosis.

 

The biggest challenge that faces the Mission now is to make sure excellence is shared so that others can attain Centre of Excellence Status, and to ensure that support is in place so that the rigorous process of accreditation and review can be sustained and scaled. The mission is a ‘convening body’ that receives its funding from the partner organisations, so your ongoing support of brain tumour charities, like brainstrust will help this to happen.

 

 

About the Tessa Jowell Brain Cancer Mission

Tessa Jowell Brain Cancer Mission LogoThe Tessa Jowell Brain Cancer Mission is supported by the Department of Health and Social Care and brings together leading clinicians and academics, Brain Tumour Research, Cancer Research UK, The Brain Tumour Charity, brainstrust, Brain Tumour Support, The Minderoo Foundation, The Tessa Jowell Foundation, Act for Cancer and the National Cancer Research Institute, amongst others.

 

In her famous last speech in the House of Lords, Baroness Tessa Jowell appealed for society’s big problems to not be put into the “too difficult box”. The Tessa Jowell Brain Cancer Mission was later set up to deliver the MP’s defining public health strategies and design innovative solutions to transform brain tumour treatment, research and survival to ensure all patients across the UK receive the best possible care, regardless of where they live. It serves as a convening body for these organisations, enabling them to work together to make a tangible change in brain tumour treatment and research. TJBCM is neither a charity, fundraising nor grant-awarding body.

 

Over the next five years the TJBCM is focusing on six strategic objectives, organised through individual Strategic Programmes. The mission is working on initiatives in the areas of patients, clinical trials, training for physicians, research, emerging data and technology and the Tessa Jowell Centre Designation. The Centre designation programme was chaired by Emerita Professor Kate Bushby from Newcastle University, whose husband Jimmy Steele died with a glioblastoma in 2017.

 

In line with Tessa’s aspiration of “I hope that cancer patients like me, can live well with cancer, not just be dying of it,” the reviewers paid special attention to neuro centre’s patient quality of life care and looked for a culture of kindness and respect. The Tessa Jowell Centres of Excellence will form a world-class network of brain tumour treatment and research centres, providing patients with access to the very best treatment and research opportunities.

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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