Working effectively with your team

Knowledge is power: key questions to ask your doctors

I feel I have a far better idea of what to ask my consultant when I next see him and what the long term implications will be. This has given me more sense of not only an understanding of my situation, but I feel like I have regained some control of the situation and my life again.

Nadia, patient, London.

Who and what to ask

Our Who’s Who guide will help you get a sense of the roles of the different healthcare professionals in your clinical team.

It is essential to know about the type of tumour and also whereabouts it is in the brain, as this will provide information about the type of symptoms that could be experienced. If possible seek the answers to these key questions as soon as you can:

  • What is the tumour type?
  • What is the grade?
  • Where is it?
  • How will its position impact on me?

And of course, the more you know, the more in control you will feel as you will be able to make informed decisions about which direction you should take whilst navigating your way around.

See our Patient Guides to help you focus on key questions.

One note about managing expectations. Your doctor does not always have the answers. They want to do the best they can for you but sometimes they too are frustrated that options can be limited. Accept this and consultations become more open as you explore options.

But we know too how difficult it is staying focused in such an emotional situation. There are things you can do that might help you to have better, more focused conversations, one of which is simply planning the conversation. The vast majority of people say it is important to communicate their wishes when ill, but only some people put this into practice. Planning and rehearsing what you’d like to get out of a conversation can make it infinitely more valuable.

Second opinions can be invaluable for serious diagnoses. Find out how brainstrust can help you seek a second opinion.

Being ready

Explore in your own mind:

  • Why do you want to have the conversation? What is important to you in doing this?
  • Why now?
  • What do you need to say?
  • What do you believe the other person needs to hear?
  • What do you need to be ready to have the conversation?
  • How can you resource yourself?
  • Where should you have the conversation? What is important about the environment?

Doing it well

There are four stages of awareness that shift the scope of a conversation from individual reflection to shared insight:

  1. Concrete information – the facts
  2. The emotive responses – the feelings
  3. Their interpretation – where the deep grappling is done to find the meaning
  4. The decision – where implications and decisions are discussed.

1. Concrete information – the facts

Focus of the questions The facts about the brain tumour – the medical and the situation (the external reality, which your consultant won’t know. For example, you are the patient and also the main caregiver for two small children).
What it does for you both Ensures that everyone deals with the same body of data and all of the aspects
Questions are in relation to: The senses: what is seen, heard and touched
Key questions What do I hear? What words or phrases stand out? What happened – use summary to recap what you think you heard to establish the facts.

2. The emotive responses – the feelings

Focus of the questions Internal relationship to the brain tumour
What it does for you both Reveals internal responses
Questions are in relation to: Feelings, moods, emotional tones, memories or associations
Key questions What do you spend time thinking about? How does it make you feel? Where and when have you struggled?

3. The interpretation – where the deep grappling is done to find the meaning. The interpretative responses build on the facts, plus associations or feelings from the reflective level.

Focus of the questions The meaning of it all
What it does for you both Draws out the significance from the facts for you both
Questions are in relation to: Layers of meaning, purpose, significance, implications and values. Considering alternatives, options and the plan.
Key questions What is happening here? What is this all about? What does it mean for us? How does this affect us? What are our insights from this?

4. The decision – where implications and decisions are discussed. Here some kind of resolve brings the conversation to a close. The questions allow for conscious choices to be made.

Focus of the questions Resolution, implications, new directions
What it does for you Makes the conversation relevant for what you want in the future
Questions are in relation to: Clarity, planning and action
Key questions What therefore do we want? What decision is called for? What are the next steps?

Did this information make you feel more resourced, more confident or more in control?

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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