In Charity News

Hello! I’m Molly, the London and South East Support Specialist and the Children and Family Support Officer. I work from home in Sussex, occasionally with my fluffy companion, Daisy, who is often curled up at my feet.

I joined brainstrust in March 2022 and I’ve enjoyed connecting with so many of you over this time. Most of you will have friends or family that you can reach out to, but how many of your find yourself holding back even just slightly to avoid burdening your loved ones? I get it, and that’s exactly why I’m here. It’s important to me that you feel there is someone that you can tell exactly how things are for you right now.

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 Molly at brainstrust can look like:

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

08:30 – 09:30 – After walking and feeding Daisy, it’s time to get started with work. I’ve always been a morning person, so I often spend the first hour firing through my to-do-list and my emails to make sure that anyone who has reached out to me overnight hears back first thing.

 

09:30-10:30 – We have a support team meeting where we talk about what’s going well, what we’re struggling with and the projects we’re currently working on. In this week’s meeting, I’m able to report that the know how I’ve been working on has now been launched on the website about ‘How to prepare for hospital discharge’ . These are 5-minute quick reads to help you feel more in control and better prepared for what’s ahead on your brain tumour journey.

10:30-11:00 – I pick up a helpline call from a patient called Lauren. There have been changes on her recent scan and she’s been offered the choice of surgery. She’s not feeling confident about going ahead with this plan as she’s heard about surgery cancellations at her particular hospital due to access to HDU beds. We talk through what she needs to feel safe and more confident in her clinical care and she decides that a second opinion and hearing what another hospital can offer would help. We talk though two options of being referred by her GP or having a private consultation with a hospital in London. Lauren is going to talk to her husband, and we’ll check in again in the next couple of days once she’s decided.

 

11:00-12:00 – I’ve been mapping out support centres in my region and today I’m reaching out to them. Some of these you may have already come across like the Maggie’s Centres  at The Royal Marsden, Charing Cross, Bart’s and the Royal Free or some others like the Macmillan Horizon Centre in Brighton or the Fountain Centre in Guildford. Some are new to me so I’m saying hello and introducing our services. Some, I’ve been in touch with before so I’m checking in with them and seeing if they’d like a top up of any of our resources like our support catalogues or fatigue books.

 

12:00-12:30 – Lunchtime and out into the beautiful sunshine for a 17-minute loop around the park by my house.

12:30-13:00 – I hop onto the Facebook support group to have a quick read through to see what people are posting about and if I may be able to add any helpful or supportive comments.  James has shared a poem that he’s written about his experiences, Tony has shared pictures of his recovery from surgery and Lucy is asking how she orders a brain box to have resources posted to her. I add a comment to let her know that she can order this through our resources page.

13:00-14:00 – I’m running the Meningioma Matters online meetup. It’s a great turn our today, we have 14 attending. It’s a very supportive and welcoming space. Linda who is new to the group is sharing that she’s had a difficult week with fatigue. John who has been to a few meetups before jumps in to reassure her that he also suffers with this and shares what he finds really helps him on the difficult days. Adam is new to the group and is asking whether he has to surrender his driving license. A few share about their experiences and I share a link to our driving know how in the chat box. Phoebe shares that she’s worried about her upcoming scan. Lots in the group offer her reassurance and I mention about our coaching offer to talk through her feelings of uncertainty and explain that I will ask her local Support Specialist to reach out to her to talk this through.

 

14:00-15:00 – I have a video call with Damon (I will use his real name here as he’s our lovely new peer supporter and soon to be volunteer coach). We talk through the possibility of presenting opportunities as he’s interested to do more public speaking. We talk about an upcoming wellbeing day in Brighton which he delighted to present at to talk about what’s made all the difference for him since his diagnosis. We also talk through talking at a school who is fundraising for us and wants us to speak in their assembly about the impact of a brain tumour diagnosis.

 

15:00-16:00 – I have a coaching call with Steve who is a dad to Millie who was diagnosed with a non-malignant brain tumour in 2021. He’s feeling overwhelmed at the moment as Millie is struggling with behaviour and personality changes. He’s having to focus a lot of his energy on supporting Millie and his family at the moment and is feeling conflicted with his core values as he doesn’t feel like he is achieving or help others. We talked through positive self-talk when he doesn’t feel like he’s achieving. We also worked through a chunking exercise to breakdown a realistic training programme towards his race in the summer where he is fundraising for brainstrust and Sheffield Children’s Hospital as he wants to help others facing the same as what his family has. This helped him to feel more aligned with his core values, less overwhelmed and more on top of things. We’re going to speak again in a months’ time.

16:00-16:30 – I hop back onto my emails to send a few replies and tick the last things off the to-do list before finishing for the day.

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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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