In Campaign News

Many people with a brain tumour are not receiving the care and support they expect, according to the National Cancer Patient Experience Survey 2016.

The survey is designed to monitor national progress on cancer care, provide information that could be used to drive local quality improvements, assist multi-disciplinary teams, commissioners, and NHS Trusts in improving patient services, and inform the work of charities supporting cancer patients.

The survey found that:

• Only 26% of people with a brain tumour received a care plan

• 42% said they felt their clinical team worked together all of the time to give the best possible care

• 40% felt supported by their GP

• 42% felt happy with the provision of care and support post treatment

• 63% were happy with how their results were communicated to them

All of the above showed a decline from 2015. 

• On a positive, 85.5% felt they had all the information they needed about radiotherapy, and 57.6% (an increase from 52% in 2015) had a better understanding of how the treatment worked for them.

At brainstrust we believe that everyone living with a brain tumour should receive the best possible care and treatment. We work with patients, their families, carers and health professionals to help them secure the right care for them.

We’re disappointed with the results from the 2016 survey and are committed to making sure the brain tumour community is better supported at all stages of their cancer journey.

brainstrust’s Helen Bulbeck, director of services and policy, said. “In the face of generally positive, and improving, experience (respondents gave an average rating of 8.7), brain tumour patients continue to be suffering unnecessarily, as evidenced by these eye watering results. Being diagnosed with a brain tumour is not like other cancers. Living with a brain tumour brings progressive neurological deficits and so there is far more at play, not least the 120 different types of brain tumour. With so many challenges presented by the tumour and the blood-brain barrier, and then the cognitive, physical and emotional impact, caused by the tumour and treatment, it’s easy to see it’s a serious disease with unmet need, both in terms of treatment and interventions around quality of life. We have made marginal gains, but the job is not done.” 

 

Here’s what we’re doing

We know that things are not as good as they could be, that’s why we’re here.

  • We’ll be talking with two professors of primary care for oncology and diagnostics to find out how patients and caregivers can be put back in control of their care and treatment.
  • We will revisit our programme which explores how to have better conversations with clinicians.
  • We will look into the barriers for the low accrual rates for brain cancer clinical trials, and continue to work with Cancer Research UK and The National Cancer Research Institute
  • We will continue to focus on improving the transition point to community care after acute treatment.
    We will keep working hard to ensure that everyone who is diagnosed with a brain tumour knows about the range and quality of our support.
  • We will continue to work with patients, their families and carers so they can have improved conversations with clinicians.

What you can do for a better experience

  • Contact brainstrust to talk to one of our support specialists, who will be able to help and support you on your cancer journey. Call 01983 292 405 or email hello@brainstrust.org.uk
  • Visit our support pages on the website for information about brain tumour treatment and care.
  • Visit our events page www.meetup.com/brainstrust for details of our workshop, events and meet ups.
  • Share your story with us. Help us raise awareness so that we can help more people living with a brain tumour. Call 01983 292 405 or email hello@brainstrust.org.uk

National Cancer Patient Experience Survey - Brain Tumour Info

 

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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