In Brain News, Charity News

A golden opportunity or a burning platform?

This is our understanding of cancer treatment during Covid, based on conversations with our community, and the data available. How do your experiences of cancer treatment during Covid compare? Let us know, and if you have any questions, get in touch (hello@brainstrust.org.uk)

These two phrases, “golden opportunity” and “burning platform,” describe two different approaches to telling the same story. The first describes the incredible potential that the NHS can realise by transforming itself to meet growing demand during the Covid-19 pandemic, so that change for good can be a lasting legacy. The second phrase refers to the challenges that this pandemic has wrought and a potential downward spiral that can only be arrested if the NHS transforms itself to correct the problems. Both stories are true, and both are intended to create the same outcome: supporting a painful and difficult transformation. Yet they can create very different impressions, impressions that the media is all too quick to report. There is always more than one version of the truth. The bottom line is that across all cancer services, 85% of treatments were delivered. Given the pressure on the NHS during this pandemic we think that’s a pretty good outcome.

So what has the impact of Covid-19 been on people living with a brain tumour? We have been monitoring the situation continually. We know there was a period of just two weeks at the height of the pandemic when the numbers of people with a newly diagnosed glioblastoma, the most lethal form of brain tumour, were not presenting at clinics in some key hospitals. And yet in others it has been business as usual.

Did your treatment plan change, or continue as planned over the last five months?

What does the data say?

The latest data release[1] shows that under the two week wait (2ww), on average over the three months of April to June, 95% of people diagnosed with a brain tumour were seen within the recommended 2ww guideline. This rises to 97.9% of patients being seen with three weeks. 18 units (75%) provided information from 80 MDT meetings that discussed 1221 patients at the height of the pandemic. 10.7% of patients had their management changed. There was marked variation across the UK (0%–28% change in management). Units that did not change management could maintain capacity with dedicated oncology lists[2].

And for people receiving treatment within 31 days of diagnosis? Unfortunately, we don’t have the brain cancer data, only data for the common cancers; brain is included in other cancers. ‘Other’ cancers have held up well throughout with on average 96% of first treatments being delivered within the national recommended guideline of 31 days post diagnosis. It is hard to comment more without specific data on brain cancer but this is not available. If you are one of these people – please share your experiences with us.

Consultants have said that urgent cases (so people with malignant brain tumours and those with brain metastases) continued to be treated according to standard policies throughout the Covid-19 timeframe, and brain cancer surgery continued to be delivered in most centres. At the peak, in April, it was necessary to stop surgery for some non-urgent cases in a few, but not all, centres. Where surgery was stopped centres worked with other providers such as for stereotactic radiosurgery, but concern was raised about patients moving around England during lockdown, when it would have been safer to delay the treatment until the risks had reduced. So risk versus benefit.

Golden opportunities

Firstly, there has been an unwavering dedication from our brain cancer clinical community, whom we know have gone above and beyond to be there for our brain tumour community. We’d also like to shout a massive thank you too to everyone who is living with a brain tumour for understanding risk versus benefit. You got that sometimes it was better for your chemotherapy or surgery to be delayed by just a few weeks as this was safer than the risk of catching Covid-19. This has led to more engaged conversations with your clinical team, about your appetite for risk, your context and what’s important to you.

What else? Well, the agile approach to virtual health and care has been a golden opportunity. This has been long overdue and what was thought would take years to achieve was done overnight. We know that during Covid-19 about 85% of consultations were done by telephone, compared to about 14% previously; this will self-regulate over time and will probably reduce.  What we need to focus on next is how can remote consultations be optimised so that you get the most of your appointments. Do you have any tips on how to get the best out of a remote appointment?

The way hospitals reorganised themselves to provide Covid-19 free environments so that treatments could continue has been a golden opportunity. Innovative approaches such home treatments, using mobile units, having ‘dirty’ scanners where Covid-19 patients scanned and clean scanners for non Covid-19 patients, have been established. Did you begin having treatment at home during Covid? How did you find it?

Collaborations have grown that would never have been on the agenda before. The Programme Director for the NHS Cancer, the National Clinical Director for Cancer and the National Cancer Director have all made time in their diaries every week to update us and in so doing have truly valued the supportive work which charities such as brainstrust deliver.

A burning platform?

We know that screening for some of the common cancers, such as bowel and breast were put on hold and that this is a burning platform.  As too is clinical research, not just for brain cancer but for all cancers. Research charities have lost impetus for funding as trials were closed and those in set up, halted. Whilst things are restarting this burning platform will continue for months, if not years, to come.

One of the most impactful stressors for our community has been for those people who have a life limiting diagnosis, and then have been unable to do the things that matter to most to them. We know how important it is to have your best possible day and that having a good quality of life can extend your prognosis. This is a bitter pill to swallow when you can’t see your grandchildren, or you can’t sit and hold the hand of your loved one as they are in hospital. How did you cope during this period of increased isolation?

We may feel better believing there is one single truth, and thinking everyone who doesn’t see things the way we do simply doesn’t have the truth. That’s not true. Everyone has a lens on the situation that’s distorted by what they want, how they see the world, and their biases. This is never more so when you are living with a brain tumour. The one truth we have learnt from this pandemic is that there are multiple truths and that these come in many forms. Our job has been to share some of these.

 

 

[1] https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/monthly-prov-cwt/2020-21-monthly-provider-cancer-waiting-times-statistics/provider-based-cancer-waiting-times-for-may-2020-provisional/

[2] Price SJ, Joannides A, Plaha P On behalf of the COVID-CNSMDT study group, et al

Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (COVID-CNSMDT Study)

BMJ Open 2020;10:e040898. doi: 10.1136/bmjopen-2020-040898

 

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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