In Brain News, Research News

The latest Coronavirus guidance for people with a brain tumour

On 31st October, the government announced the details of new national restrictions that will take place in England from 5th November until 2nd December. You can view the details of these new restrictions here.

Just like last time, we are still here for you during this lockdown and beyond. Whether you want to join us for a virtual meetup or webinar or arrange some coaching sessions with a support specialist – you don’t need to face this alone.

Give us a call on 01983 292 405 if you don’t know where to start, or drop an email to hello@brainstrust.org.uk

In this article you can read:

  • The latest guidance for the clinically extremely vulnerable in England
  • The current restrictions and guidance in Scotland, Wales and Northern Ireland
  • What has changed in England
  • The updated guidance for children and teenagers with a brain tumour

The latest guidance for the clinically extremely vulnerable in England

Alongside the new restrictions, there is also additional guidance for clinically extremely vulnerable people. For people living with a brain tumour diagnosis, this guidance applies to people having chemotherapy or who are on a high dose of steroids. Clinically extremely vulnerable people who are on the Shielded Patient List, will receive a letter with details of the updated guidance. This is what the letter will say (please understand until you receive a personal letter this is for reference only).

Scotland, Wales and Northern Ireland have different national restrictions and advice for clinically extremely vulnerable people.

Scotland: There is currently a system of local protection levels in place across Scotland. You can view details of these levels here.

Wales: Wales is currently under Firebreak restrictions until 9th November, when new restrictions will be announced. These current restrictions apply to everybody who lives in Wales. You can view details of guidance for clinically extremely vulnerable people in Wales here.

Northern Ireland: The current restrictions for Northern Ireland have been in place since 16th October and will run for 4 weeks. There are no additional restrictions for clinically extremely vulnerable people. You can view details of the current guidance here.

So what has changed for people who are clinically extremely vulnerable?

From 5 November, new national restrictions will be put in place in England. The additional guidance for clinically extremely vulnerable people is:

  • Stay at home as much as possible, except to go outdoors for exercise or to attend essential health appointments
  • Work from home where possible. If you cannot work from home, it is advised that you do not attend work for this period of restrictions. You may be eligible to apply for financial support during this period and may be able to use any official communications advising you to shield as evidence to help you access this support.
  • Avoid all non-essential travel by private or public transport. This includes not travelling to work, school, shops or pharmacy. Where possible you should ask others to collect and deliver items on your behalf. This can be done by friends, family members or volunteer groups. You can also register for additional support which includes access to priority supermarket delivery slots. You can find more information about this here.

Full details of the new restrictions can be found here.

It is important that you still continue to seek support from the NHS and other healthcare providers for existing health conditions and any new health concerns you may be experiencing.

Latest COVID-19 guidance for children and teenagers with a brain tumour

At the start of the Coronavirus outbreak many children and young people with a brain tumour were identified as a clinically vulnerable and were placed on the shielding list. At the time the decision was based on limited evidence. With more data analysis and research, the advice about which children are at a higher risk of infection because they are classed as ‘clinically extremely vulnerable’ has been updated. Many children and young people that were on the list for shielding originally may not be now. This is because the risk of COVID-19 for children and young people with cancer remains low (CCLG).

Children and young people with a brain tumour may be placed in two groups:

  • Extremely vulnerable group: Children in this group are typically on active treatment for certain tumours and are at risk of contracting other infections apart from Coronavirus. Because of this, children in this group are not recommended to attend school or nursery. They should follow the government guidance of social distancing and hand washing. They do not need to follow strict shielding rules. Siblings of children in this group can continue to go to school as child to child transmission remains low. You may want to keep all your children at home, but it is important you discuss this with your child’s clinical team and respective schools.
  • Vulnerable group: These children can continue to attend school and families do not need to follow strict shielding rules. Families should follow government guidance and follow good hygiene to prevent infections. Children and young people in this group can go out for exercise but must remain in their households or support bubbles.

For full details of which grouping your child may fall in to have a read of the guidance published by CCLG. For many children and young people with a brain tumour, clinicians may evaluate this case by case to decide whether the person needs to remain on the shielding list and what guidance you should follow. If your child is on treatment, the team at the hospital will inform you of any changes you need to follow to feel safe during this lockdown. For those that are not currently in treatment, you will need to get in touch with your child’s GP for guidance on what grouping they are in.

If you are a parent or caregiver, and you are unclear as to whether your child falls under the extremely vulnerable group, please reach out to your clinical team or GP.

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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