In Charity News, Press Releases

If you think you have a brain tumour, or are worried about cancer, please contact your GP. The NHS is still open.

The NHS is very much open for people with cancer, or suspected cancer. GPs (primary care) and hospitals (secondary care) are concerned that they are seeing fewer people with signs of cancer. This includes people with brain tumour symptoms. We know that neurosurgical departments are seeing fewer cases at a number of hospitals, and also that the number of people being referred to hospitals through the two-week wait (2WW) referral system has dropped by 75%. This is for all cancers. As ever, being diagnosed with a brain tumour is a little different with nearly 60% of people being diagnosed through accident and emergency.

What is the impact?

Two large hospitals have reported to brainstrust a very worrying drop in people having neurosurgery for the most aggressive brain tumour, a glioblastoma (GBM). One major centre that usually has 3 to 4 GBMs every week discussed at MDT – there have been none in the last three weeks. Another neuroscience centre usually has 6 GBM surgeries every week. It has had one in the last 2 weeks and none booked for the foreseeable future. These cases are being referred straight to palliative care and are having no active treatment.

So – if you are worried and think you may have a brain tumour, your GP is your first port of call, or A&E if you feel your symptoms need urgent attention – such as if you have had a seizure for the first time, or you have signs or symptoms like those associated with a stroke.

Helen Bulbeck, brainstrust’s Director of Services, is working closely hospitals in understanding the impact of COVID-19 on people with a brain tumour. She says: “It is vital that people are diagnosed promptly if they have cancer, including a brain tumour. And we all have a part to play in getting diagnostic services switched on again too. If you have signs or symptoms that are associated with a brain tumour then we’d urge you to seek medical advice, either from your GP or A&E if you require urgent help for severe signs”.

During Wednesday’s briefing from NHS England on cancer care in the context of COVID-19 we highlighted the challenge: “There is urgent need for stronger messaging that the NHS is still open. We are concerned that [in some hospitals] the most aggressive brain cancer (glioblastoma – GBM) cases have evaporated. We know of one hospital that would usually have 3 to 4 GBMs every week discussed at MDT – there have been none in the last three weeks. And another that usually has 6 GBM surgeries every week. They have had one in the last 2 weeks and none booked for the foreseeable future. These cases are being referred straight to palliative care and are having no active treatment. On average this shortens these people’s lives by a year.”

NHS England’s Clinical Director for Cancer responded that he would look into this straight away. And on Wednesday, Secretary of State for Health, Matt Hancock said in response to a question from Labour MP Rosie Cooper, that whilst he can’t give a guarantee that all cancer treatment will go ahead, that there is enough capacity in the NHS for cancer patients. He added that while “the virus is still at large” there is some cancer treatment that is “clinically inadvisable to undertake now”. “Having said that, we do want people to come forward – we want as much cancer treatment going ahead as possible,” he adds.

But we must remember that we all have a role to play too. If you suspect you have a brain tumour, if you have a brain tumour and you’re feeling things are worse than they have been previously, or if you suspect cancer at all, you should speak to a doctor.

Signs and symptoms

We have compiled a list of brain tumour symptoms on our website, but please bear in mind that we cannot advise whether or not you have a brain tumour – only a doctor can do that. Our support is available once you have received a diagnosis.

You can read about the red flags for a brain tumour here.

And don’t forget, if you are unwell, your doctor wants to help you.

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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