In Charity News

Hello! I’m Jodie, the Head of Support and Support Specialist for the Midlands at brainstrust. I am based at home in Lichfield, Staffordshire, occasionally assisted by my lovely dog Roxie- although she isn’t up to much as far as a helping hand with work goes! I joined brainstrust in December 2017 with a passion for wanting to support people to navigate their way through the life changing news of having a brain tumour diagnosis.

During my time at brainstrust, I have been incredibly privileged to connect with so many of you, both from the Midlands region and other areas as well- thanks to the power of zoom! Aside from this, one of the other things that I really enjoy about my role is the opportunities to get involved in so many different projects. The brainstrust Support team is a small (but hugely productive) team of 7 who are responsible for delivering everything related to our support service. This includes our information production, events coordination and facilitation, coaching service as well as responding to emails and calls that come through our helpline. As a charity we balance being proactive with being reactive and being there for people when they need us the most.

Join me below as I talk you through what a day as Jodie at brainstrust can look like:

Midlands Suppawt Specialist, Roxie

8:45 – 9:00 am – After feeding Roxie (8am on the dot) and having a couple of morning coffees, it’s time to get to my desk and open up my laptop ready to start the day.

9:00 – 9:30 am – I spend about half an hour checking through my emails and responding to anything that may have come in overnight. We have received a couple of new brain box requests from a patient and a caregiver so I get in touch with them and organise for their boxes to be sent out. All of our brain boxes are put together and sent out by Ellie, our wonderful Resources Officer who is based in our Leeds office.

9:30 – 10:45 am – I have a coaching call with Lorna* on our Thrive platform. Lorna was diagnosed with a Meningioma in 2019 and is struggling with the side effects of radiotherapy treatment that she had last year. We talk through what is happening at the moment and where she feels she wants to be. We talk through the impact that fatigue is having on her to day-to-day life and talk through some strategies that she can implement into her daily routine. We identify what some of her key values are which underpins our coaching conversation about why the fatigue is impacting in the way it is and using these values to prioritise the management of it. Lorna expresses that things feel a lot clearer now and she feels she has a good way forward. We plan to speak again in two weeks time.

10:45 – 11:15 am – I update my availability on the Thrive platform for my next call with Lorna and send her some follow up notes following our call. Then it is time for a cup of tea (and maybe a biscuit) before my next call at 11.30am.

11:30 am – 12:15 pm – I have a call with Rosie, the brainstrust Support Specialist for Wales, Bristol and Liverpool to plan an upcoming Fatigue webinar. Rosie is relatively new to the Support team having joined in September 2022 and this is the first time she has ran a coaching webinar. We go through the format of the session, decide who is going to lead on which section and discuss a plan for contacting attendees ahead of the session and following on from it. We both come away with actions to work on the presentation ahead of the webinar.

12:30 – 2:00 pm – Following from a morning of different calls, I spend some of the afternoon going back and checking in with emails that have come in. I have some emails from patients and caregivers that I am in regular contact as well as a request to arrange a call to find out more about our coaching service. I schedule a call in with this patient for two days’ time.

During this time, I also take some time to review one of our information resources that needs updating. All our information resources have to go through a content and design review every 3 years which is done by a member of the support team alongside patients and caregivers. I send the suggested changes to Catherine our Designer who will put these into place ready for me to check over before they are proofread, signed off and then reprinted.

I then take a look at planning my monthly regional broadcast that goes out at the start of each month and deciding which content I want to include in it.

2:00 – 2:30 pm – I take a call on our helpline from John*. His father has recently been diagnosed with a GBM4 and is currently recovering from surgery. He is due to go visit him tomorrow and is worried about what to expect from the visit and how his father will be. We talk through what about the visit is worrying him, what he knows and what he wants to know. We talk about the support that is available and I make a note to follow up with an email signposting to our know how on ‘living with uncertainty’ and our online meetup for family and friends of people with a brain tumour diagnosis. John is based in London, so I have made a note for Molly, our Support Specialist for London and the South East to check in with him in a weeks’ time. In the meantime, he leaves feeling more supported and informed and knows he can get in touch with us when he needs to.

My home office set up

2:30 – 3:15 pm – In my capacity as the Head of Support, I have a one-to-one with Carol, our Support Specialist for Scotland. We have a chat through Carol’s current workload, and she updates me on some projects she is working on. Carol leads on organising our online events programme so we talk through what is coming up with that respect and start to plan the next couple of months. The support team are all home based across England, Scotland and Wales so making sure we keep in contact on a regular basis through one-to-ones and also more informal channels like slack and WhatsApp is key to helping us feel connected with each other and work effectively.

3:15 – 5:00 pm – For the rest of the afternoon I follow up with various bits and piece on my to do list. I have had a request from a caregiver who would like to be connected with one of our peer supporters, so I take a look at our database to see who would be a good match and message Laura, our Support Specialist for Central Southern England who leads on our Peer Support Programme.

We are currently putting together a new leaflet to advertise our coaching, counselling, and hypnotherapy services so I make a start on writing the copy for that and preparing for our next meeting to put it all together.

I have a lot of different projects on the go at the moment, so I take a few minutes to go through what my priorities are for these over the next week or so.

I am running an online meetup later on in the week so I send an email to our regular attendees with the zoom link and set up emails on Eventbrite so everyone has access to this.

The following day I am away from my desk at a meeting with a regional Cancer Alliance so I make sure I am up to date to make the return to my desk the day after a bit easier.

Before I log off for the day I do a check in on our Facebook support group to take a look at recent posts and where necessary reply to people.

5:00 – 5:20 pm – I take a call from Liz* who I have been in contact with for a number of years. She has had her latest scan results and just wants to have a chat through it with me as she is feeling a bit anxious. We talk through where she can find her moments of calm and she comes away from the call feeling glad that she reached out. She will email me when she wants to talk again.

5:20 – 5:30 pm – I do a quick check of my calendar and reply to any remaining emails and log off for the day. Time to take Roxie for a walk!

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

There is no such thing as an ‘average’ day at brainstrust (which is one of the things that I love). Our job is varied and busy but above all important. We couldn’t do the job we do without the support of our wonderful community, and for that, we are all so grateful.

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Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and healthcare professionalsResearch News
Ann’s story: living with a meningioma and accepting the new mePatient story

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