In Charity News

Hi! I’m Rosie, brainstrust‘s Support Specialist for Wales, Bristol and Liverpool. I’m based in Cardiff. I joined brainstrust in September 2022 after having studied for an MSc in Psychology at Cardiff University. I’ve previously worked in tourism marketing, so this role is quite a change, but in the past I’ve volunteered with caregivers, children with special needs, and people with dementia, so I knew I wanted to help make a difference. I’ve found the role very rewarding so far.

It’s also very varied – my days are always busy, filled with patient support and project work to different degrees. While no two days are the same, hopefully the below will give you an idea of some of the things I get up to in a ‘typical’ day!

9:00-9:30am – I usually start work at 9am. I spend this half hour checking through my email inbox, writing a to-do list in my diary for the day ahead (I’m a big fan of list-making!), and checking our Progress Tracker spreadsheet. The Progress Tracker is a questionnaire we send out to any new patients or caregivers (plus people we’ve supported before; we’re keen to build up data for second trackers, so we can paint a picture of how we’ve helped). It’s a chance for people to reflect on how things are for them. This is so we can offer the most personalised, tailored support. I check this spreadsheet for new responses from people in my regions, and then send them an email to follow up about their answers and see how we can help address specific issues they may have.

9:30-10:00am – I then have a quick catch-up call with my colleague, Mariel, to talk about an event we’re planning for Liverpool. We’ve been developing a programme of talks and workshops, working with other local organisations and charities, with the aim of boosting wellbeing and resilience for those affected by brain tumours in the region. We have a call to chat through anything that might need doing as a priority over the next few days, whether that’s checking details with the venue, or confirming the programme. After this call I prepare for my next one, with a patient…

10:00-11:00am – This is the first call I have had with this patient – Martin* – and it’s a good chance to hear what’s been going on for him recently. He’s been struggling with the uncertainty and anxiety caused by waiting for his scan results, so we chatted about ways he could feel calmer and more reassured. I mention our wonderful hypnotherapy sessions, and our peer support programme. He is interested in talking to someone else who’s experienced what he’s going through; his situation is sadly far from uncommon.

11:00-11:30am – After my call with Martin, I spend some time logging it on our database, to keep a record of what we spoke about, and send him a follow-up email with useful links and a recap. I also have a tea break!

11:30am-12:30pm – I then have a Zoom meeting with my colleague, Carol, and Louise, who runs our hypnotherapy service. We plan our theme for the next couple of months – a topic that Louise can focus on during her popular two-part sessions, which run twice-monthly. It’s a good opportunity to put our heads together and think about what might be most useful for the community; one of the previous themes has been that of increasing calmness and confidence when facing medical procedures and processes.

1:00-1:45pm – Lunch time! I find sticking to a routine helps, especially as I work from home. So, around this time each day I have a bite to eat while reading some of my book (I’m trying to read more in my downtime, rather than getting sucked into scrolling social media!). I’ll also try and head out for some fresh air; I’m lucky to live five minutes from a lovely park, so I’ll take a break with a walk. When I’m back at my desk I spend some time getting ready for my next meeting…

2:00-2:45pm – A fair proportion of my work at the moment involves networking and meeting with clinical teams and support workers across my regions’ hospitals and local organisations. This is so I can spread the word about the work we do, and give information for these staff to signpost patients and caregivers to our support. Today I have a great call with an acute oncology team from one of the Welsh hospitals. I present some slides, answer their questions, and send a follow-up email with relevant links.

3:00-4:30pm – I use this time in the afternoon to get stuck into some project work. Whether that’s creating a dedicated section on our website for teenagers and young adults with brain tumours; continuing to develop the plans and programmes for my in-person, local health and wellbeing events later in the year; or sending some information to my colleague, Bridget, to help inform her regional funding and grants applications…there’s lots to be getting on with! Our brainstrust phoneline might also ring in this time- it could be anything – from a fundraising enquiry, to a patient or caregiver wanting some support – so I’ll be sure to do what I can to help.

4:30-4:45pm – Time for a tea and biscuit(s) break. I may try and read a page or two of my book, but I usually end up scrolling on my social media feeds, or gazing out of the window at the birds and cats in the neighbours’ gardens.

4:45-5:30pm – It’s nearly the end of the day, so I’ll use this time to get back to my inbox and reply to the emails I need to, plus follow-up from any calls and meetings. The brainstrust team has a Slack message board, with various channels relating to different aspects of our work; while I monitor messages throughout the day, this is a good time to dive in. When I’m at my productive best, too, I try and spend time at the end of each day to write my to-do list for the next – often it ends up being the first task in the morning though, as it was today!

It’s great to get stuck into lots of varied projects, and speaking to different people, whether they’re patients, caregivers, or clinicians. It can be a test of my multitasking sometimes, but working to support three different regions is a great challenge with a great reward.

 

*Names and certain details have been changed to protect the privacy of the individual.

 

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Damon’s story: from petrified to believing that absolutely anything is possiblePatient story
A day in the life of the brainstrust support team: Mariel (North England)Charity News

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