In Campaign News

Two news items doing the rounds this week. One is the Cancer Drugs Fund (CDF); the other is the Cancer Task Force. Both are responding to an agenda which desperately needs clarification, a dose of common sense and a little less ego.

 

What do these changes mean for you, our brain cancer community?

Both are about securing the best outcomes for people with cancer. We all want this. The new Cancer Task Force is tasked with finding new ways of improving cancer services, identifying what needs to be done better in future by studying the kind of care patients get today. By this summer it will publish a five-year plan that aims to deliver:

 

  • Better prevention of cancer
  • Swifter cancer diagnosis
  • Better treatment, care and aftercare for all cancer patients.

 

Also announced at the same time as the Task Force, is the “ACE Programme”, which Cancer Research UK is leading jointly with NHS England and Macmillan. This programme has identified more than 60 potential projects to address late diagnosis. These will be led locally by NHS teams and include:

 

  • Giving GPs direct access to diagnostic tests
  • Working with people at high risk of cancer to help spot the disease early
  • Creating bespoke clinics where unexplained symptoms can get a quick diagnosis
  • Improving multi-disciplinary diagnostic centres
  • Boosting the role of pharmacists who keep track of regular prescriptions and may be able to refer patients for tests
  • Allowing GPs to overrule NICE criteria at their discretion
  • Enabling patients to book their own appointments for a diagnostic test.

 

Promising, but only if we can make sure the needs of brain tumour patients are met

All this sounds promising and quite a big step in the right direction – if it works and if the specific needs of the brain tumour patient are met. It’s our job to make sure that these are explicit in the ACE programme so we will be bending Harpar Kumar’s ear at CRUK. Thanks to you, the brain tumour community, we know what these needs are and we are working on what gold standard care and aftercare looks like.

 

Changes to the Cancer Drugs Fund 

And now the Cancer Drugs Fund. “This is a mess” says Helen Bulbeck, brainstrust’s Director of Policy and Services. “It was only ever intended to be short term and then overtaken by value-based drug assessment. This didn’t happen because actually nobody knows what value means. Nor how it can be identified, measured, delivered or evaluated. It needs to be researched first. Then the political landscape changed and so it was ignored. By everyone.”

And what happens when a problem is ignored? It gets bigger. So the fund has now overspent by £100 million, too many people have abused the Fund (politicans, pharmas are just two) and some poor person has to clear up the mess. Hence 42 drugs being cut from the CDF. And who reaps the fall out? The cancer community. It will come as no surprise though to see that brain cancer doesn’t feature at all in the CDF.

“BUT”, continues Helen, “we too need to change our mindset. There needs to be a complete review of cancer drug pathways so that patients get the drugs they need but these need to be drugs that do more than offer just a few weeks of extra life but at very poor quality because of side effects. There needs to be new research models and the public too have a responsibility to be realistic in their expectations”. Avastin is a case in point (which is one of the 42 drugs pulled for breast and colorectal cancers):

 

https://www.brainstrust.org.uk/news-detail.php?id=408&year=2014&newscat=4

 

And Dr Richard Smith, past editor of the BMJ, has stated:

 

‘I do think, however, that we might get a better return on our investment by spending less on cancer and more on the many other areas of research—like neurological and mental health issues, and unglamorous areas of research such as health systems and nursing. We would certainly achieve very much more if we were to invest in making sure that everybody in the world got simple, cheap, evidence based treatments rather than in novel cancer drugs, many of which extend life by a matter of mere weeks and are hugely expensive’

Richard Smith ‘Death: a response.’

 

Until this is done, the Cancer Drugs Fund is unsustainable and a political anomaly. And everyone, including the brain cancer community, needs to think differently about this.

 

But it isn’t going to happen this side of the next General Election.

 

If you’d like to share your views, why not drop us a line? hello@brainstrust.org.uk

New guide to help you if you are looking after someone with a brain tumourCharity News
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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