In Brain News, Charity News

What does the lifting of restrictions mean for you?

In March this year, the government announced details of a roadmap that would see lockdown restrictions put in place to protect us from COVID-19, easing across the UK.

Over the following months, we have seen different steps of the 4 step roadmap being followed, with the aim to be that the final step will see an end to all the restrictions that we have been living with since March 2020.

supporting you

What has changed?

The government announced on Monday 12th July that on 19th July, we will enter step 4 of the roadmap and all current restrictions will be lifted.

The lifting of restrictions does not mean that the risk of COVID-19 has gone but more that we now have measures in place to help to limit the spread of the virus including the vaccination programme, track and trace and the ability to test regularly if you have the virus.

Although shielding guidance ended in April 2021, there is still some support available for people who are clinically extremely vulnerable and may have previously been advised to shield. You can find this guidance here.

“Our mission is to make sure that people with a brain tumour have the best possible chance of living their best possible life following a brain tumour diagnosis, so we take issue with the lack of detailed advice and help provided by government for our vulnerable community. Our priority is how can we support our community to feel resilient and empowered right now, today, in the face of a lack of meaningful advice. The people we are here for, who we support, have been living with the restrictions for so long now, they will have established their ways of working. It would be good to think about what it is we can do now, what the strategies are to protect each other and for us to help them, or you, to take appropriate steps forward as things change”

What does this mean for people with a brain tumour?

We know that the past 16 months have been incredibly challenging for people living with a brain tumour diagnosis. Our community reported concerns around delayed appointments and scans, face to face appointments being replaced with virtual or phone consultations, and of course, a lack of social interaction with loved ones.

As we look forward to a life without restrictions on how we live our lives, what does this mean for people living with a brain tumour and those who have previously had to shield under the guidance for clinically extremely vulnerable people? The answer to this will be different for everybody. There is no right or wrong way to feel about how the coming weeks and months may look but is it important to know how you can manage your feelings around this.

If you are struggling with the idea of restrictions being lifted, ask yourself:

  • What is it that I am struggling with in relation to this?
  • What are the benefits for me of the restrictions being lifted?
  • What are the risks for me of the restrictions being lifted?
  • What is important to me at the moment?
  • What can help me feel more comfortable with the lifting of restrictions?
  • Who can I talk to about the way I am feeling?

Below are some links to articles we have written that may contain some useful tips and strategies to help:

Managing your feelings about the easing of lockdown

The importance of slowing down

Can we enhance our well-being by simply getting outside?

We are also running regular online sessions with Hypnotherapist Louise Baker. ‘Calmness and Connectivity’, is a two part webinar series which offer you an insight into hypnotherapy and will provide you with practical tools and techniques for dealing with anxiety; and allow you to experience how to let go of the past. You can find out more about these sessions here.

Get in touch with brainstrust:

For now, our support remains online, via email or over the phone. Come and join us on a webinar, give us a call, or get in touch with a Support Specialist.

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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