In Charity News

24 hours in the life of brainstrust support

*All names of patients and carers have been changed. 

10.30pm The support line took a call from Jo*, a patient, who was feeling isolated and low. After 15 minutes chat about what she was struggling with and how she might tackle these things, she said it was a relief to have someone there to just listen. She was much happier and went off to make a cup of tea. She’ll get a follow up call within 24 hours from Jodie, our Midlands support specialist, to see how things are.
8am Helen is heading to London to meet Lucy* who is living with a brain tumour and who has a high symptom burden. She has a second opinion today at the National Hospital for Neurology and Neurosurgery. Her mother was going to go with her but was tragically killed a month ago, so Helen is going to go with her. Before going Lucy talked through what would be a good outcome for this consultation and has a list of key questions to ask.

8.50am Helen takes a call from Jodie to talk through a very complex case that involves several people. Jodie has a coaching session booked with Jed, a father of a young, adult daughter with a life limiting prognosis, and she just wants to run her thinking past another member of the team before she picks up the phone.

10am Carol is setting up for her first Behaviour and Personality Change coaching workshop in Glasgow. This event is to support people with managing the behaviour and personality changes that can come with living with a brain tumour. The community will enjoy lunch, share experiences, support each other and become stronger on their brain tumour journey. They’ll have a safe space to talk and be heard about one of the most challenging aspects of living with a brain tumour, benefit from improved well-being, and learn some effective strategies to help cope with managing behaviour and personality change.

Jane, our London and SE support specialist, has a desk day. She is touching base with some patients and carers, as well as reaching out to some new ones.  But her main focus for the day is on developing a brainstrust Know How on Lasting Power of Attorney and a practical checklist of things to do before, during and after treatment; building on the already excellent work that a volunteer from our community has started for us.
12pm Jodie picks up the phone to Jed* for his coaching session. These tend to last about 60 to 90 minutes and give the person time to articulate what they are struggling with, what a goal would look like, what their options are and what the next steps are. Jed feels remote from his daughter and wants to be involved with her care but isn’t sure how to achieve this. He wants to make sure that he has left no stone unturned and that all options have been explored. This is his goal. So the session focuses on how he can achieve this, what does he need to know and who does he need in his team.
1.30pm Helen and Lucy take time to reflect on Lucy’s consultation and to note down the top notes and any questions that have arisen from the consultation. Helen will follow up with Lucy in a week after she has had time to process the information.

Jodie is on the support line today and takes any calls from patients and caregivers. She will deal with any immediate problems and then refer to caller on to their support specialist.

3pm Helen heads for a meeting with a caregiver who has a close friend with a glioblastoma. Antonia* is working on a project that puts patients at the centre of brain tumour research and wants to explore this in more detail. She knows that brainstrust is closely aligned with the clinical research community through our work with the JLA PSP and NCRI and has heard Helen talk at a real world evidence conference.

4pm Carol heads home after her workshop. The evaluations show that the attendees found it transformative. Carol will follow up with them all in a couple of weeks to see how things are going.

“Feel connected with others in similar situations”

“Glad I made myself attend, very welcoming and friendly”

She is already planning her next one in Edinburgh. Her evening is spent picking up referrals  that came through from Jodie whilst she was away from her desk.

4.30pm Helen heads back to Southampton. On her way home she is meeting a caregiver for supper. He recently lost his wife to a brain tumour. Martin’s wife, Anna*, had so many beautiful clothes but he doesn’t feel able to discard them when they hold value. brainstrust recently held a fundraising event, She Wears It Well, where clothes were sold in a pop up shop to raise vital funds. In the Spring, with some of Anna’s friends, this can be arranged again, as part of Anna’s legacy.

10pm Home time. Helen checks any urgent calls and emails, relocates the dog and checks her diary for the following day before heading to bed.

 

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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