In Press Releases

Children and Young People’s Cancer Coalition (CYPCC) research reveals the impact of Covid-19 on charity services.

brainstrust is a proud member of the CYPCC, a sector wide coalition of 24 charities working together to improve cancer care for children and young people with cancer.

The impact of Covid-19 on charity services

“Whilst overall the numbers of people we are helping is consistent with before the pandemic, these people are contacting us much later in their journey. We are reaching fewer families who have just received a brain tumour diagnosis, who will be terrified, alone and confused. It is vital we get back to working with these people, and sooner on their journey. No family should have to pick up the pieces following their diagnosis on their own.” Will Jones, chief executive at brainstrust.

With the resurgence of Coronavirus cases and restrictions now being heightened, the CYPCC survey is a ‘wake-up call,’ highlighting the challenges cancer charities face at a time of great uncertainty. The Coalition found that:

  • Coronavirus had affected the annual income of nearly all charities (23 of 24) with the proportion of lost income for most estimated to be between 30-60%
  • Organisations had to stop some services, whilst others have had to scale them down in order to keep them going
  • All respondents said that their ability to deliver services will be affected by Coronavirus – 50% reported longer term impact and of those remaining, the majority anticipate an effect in the next 9 or 12 months

At brainstrust we felt the drastic impact of Coronavirus as we had to completely cancel a calendar of fully booked events for people with a brain tumour, and shift to a programme of online support.

Will Jones says: “brainstrust is a fantastic organisation that can weather most storms. This is because of the incredible commitment, passion, agility and energy of our team and our supporters. We managed to get our ship in shape very quickly in April to trim costs to meet the projected drop in income and with more hard work we don’t doubt that we can balance our books and continue to provide an incredible service for years to come. However what we’re finding very very difficult right now is that we know that groups of people who benefited from our help before Covid-19 aren’t finding us now. Whilst overall the numbers of people we are helping is consistent with before the pandemic, these people are contacting us much later in their journey. We are reaching fewer families who have just received a brain tumour diagnosis, who will be terrified, alone and confused. It is vital we get back to working with these people, and sooner on their journey. No family should have to pick up the pieces following their diagnosis on their own.”

“We are looking at how to make referrals and signposting easier during remote consultations, and our team is doing more outreach work and looking closely at the promotion, content and accessibility of our events. I don’t doubt that we can tackle this challenge, but it’s a devastating fact that Covid-19 has meant that hundreds of families are getting support far too late. It is important we reach as many families as possible now even more than before, as they are not only fighting an isolated journey against a brain tumour diagnosis but also many families are filled with fear of Covid-19 and their children returning to school. In contrast some families have been living in isolation for years, since their child’s first diagnosis. We are here to help each family to feel less isolated, more supported and part of a community through our tailored support services.” Khadijha Sundus, support specialist for children and families.

Find the results of the Children and Young People’s Cancer Coalition survey here.

You have kept our support going during this pandemic. Thank you for your continued generosity. To donate to brainstrust so that we can reach the people that need us most, click here.
89863087 10156822078876697 2452790650911850496 o 10156822078856697
Oliver’s storylittle brainstrust, Patient story
anita memory picture
Memory mishaps: life after brain surgeryBrain News, Patient story, Press Releases

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