In Brain News, Press Releases

Updated shielding advice

Covid 19 shielding advice

On Monday 4th January, the government announced details of new national restrictions in England that will come into effect from Tuesday 5th January and will run initially until 21 February 2021. You can view the details of the national restrictions here.

As a result of the new restrictions, formal shielding measures are now in place for people who are clinically extremely vulnerable. For people living with a brain tumour diagnosis, this guidance applies to people having chemotherapy or who are on a high dose of steroids.

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

Scotland – From Tuesday 5 January, mainland Scotland will move from Level 4 to a temporary Lockdown, with new guidance to stay at home except for essential purposes. Some islands will remain at Level 3.

You can view the guidance including that on shielding, here.

Wales – Wales is currently in alert Level 4.

You can view the guidance on shielding here.

Northern Ireland – Additional restrictions have been put in place in Northern Ireland until 6th February.

You can view the guidance on shielding here.                

Will I be told if I have to follow the shielding measures?

You will receive a letter if you are classed as being clinically extremely vulnerable and should be following the current shielding measures. This letter will replace any previous shielding letters that you may have received. You may also receive and email and/or text message reiterating this message.

What has changed?

From Tuesday 5th January, the shielding advice for clinically extremely vulnerable people in summary is:

  • You should stay at home as much as possible as per national lockdown restrictions
  • You can exercise outside and you can meet one other person from outside your household or support bubble to do so but should make sure you do this as safely as possible and follow social distancing guidelines.
  • You should continue to attend medical appointments and seek medical help if needed.
  • You should work from home where possible. If you are not able to work from home, the advice is that you should not go to work.
  • You are advised not to form childcare bubbles during the period of national lockdown.

Should other people in my household follow the formal shielding guidance?

Other people in your household do not need to follow the shielding guidance but do need to follow the National Lockdown rules. They can continue to go to work if they are unable to work from home.

What support is available to me if I am shielding?

  • Local councils are being given funding to provide support to clinically extremely vulnerable people who need it. This support will include help with shopping or requesting priority access to supermarket deliveries and signposting you to local support or befriending services.
  • If family and friends are not able to collect any prescriptions or medicines for you, you will be eligible for free medicines delivery from your community pharmacy.
  • If you cannot work from home, you are being advised not to go to work. You may be eligible for financial support through the following channels- Coronavirus Job Retention Scheme (furlough scheme), Statutory Sick Pay (SSP), Employment Support Allowance (ESA) or Universal Credit. You should speak to you employer as soon as you can about this new guidance.
  • The Government is offering a free 4-month supply of vitamin D supplements to all adults who are classed as clinically extremely vulnerable. You can register to receive these here.

You or someone on your behalf can register for support through the Government’s ‘National Shielding Service’ website. You can find this here.

Information about the vaccination against COVID-19 for clinically extremely vulnerable people:

If you are classed as being clinically extremely vulnerable and have had communications informing you of this, you will get priority access to the vaccination against COVID-19. You will contacted by the NHS with more information of when and you will be invited to get the vaccine.

If you have had the vaccination, you do still need to continue to shield until further notice as the Government continue to assess the impact of the vaccination against all groups.

You can full the view Government guidance on shielding here.

If you are feeling overwhelmed, worried or confused and would like to talk to a brainstrust support specialist, give us a call on 01983 292 405 or email hello@oldbrains.think-dev4.co.uk

To read our full update on the current Coronavirus situation for people with a brain tumour, click here.

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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