In Charity News

Hi, I’m Carol and I’m brainstrust’s support specialist for Scotland. I’ve been with brainstrust nearly 10 years now. I initially contacted brainstrust for information when my dad was diagnosed with a glioblastoma; the support brainstrust offered us was so personal, unique and invaluable. It had such a massive impact on me and my family that when my dad sadly died, I wanted to be able to help and support other families facing a brain tumour diagnosis.

No two days are the same at brainstrust and it’s a privilege to work with the brain tumour community and be part of such a dynamic, committed team. I’m based at home in Central Scotland. Let me share my day with you.

9.00-9.30am – I start the day by checking my emails as there’s sure to be some that have come in overnight. I also check through my list of priorities for the day. I’m very old school – as well as everything on the computer I have a paper diary that I use. At this point I’m joined by Wilma, my little dog and unofficial brainstrust Scotland mascot (as well as maker of mischief!) at my feet.

 

9.30-11am –Today I’m pulling together our online events calendar for the month. We introduced online events during the pandemic. Initially it was just a few meetup groups and coaching workshops to see people through what we thought would be something short term. We wanted to ensure our community remained supported and connected during this period. But appetite grew from our community and we now offer a hybrid approach. Our online events are wonderful for connecting our community – people have a safe space to meet with others from the comfort their sofa.

We offer a rich and diverse variety of online groups from our tumour specific meetup groups, to our coaching workshops led by the support team and art and hypnotherapy classes. We also have guests from the clinical community speaking on subjects that matter to our community.

Our webinars are very much led by what our community telling us what they need and would like.

Our super Support Team Helen, Jodie, Rosie, Mariel, Laura and Molly send me the webinars they are hosting and I collate the information and send it to Catherine who prepares the graphics for Eliza, our Communications Manager, to share on our social media.

 

11.00-12.15 – I have a coaching call with Fiona. She has surgery scheduled and is understandably feeling anxious and overwhelmed, so we work on some coaching tools to help her feel more in control. People are often anxious and overwhelmed at the prospect of surgery and chatting with people who understand and can answer questions to alleviate any fears can make all the difference. Working through their biggest concerns and using coaching tools to help can help people feel more in control.

I also suggest she signs up to our hypnotherapy sessions. We run online hypnotherapy sessions with our wonderful Hypnotherapist Louise. This initially started during the pandemic with Louise running online sessions to help with the additional overwhelm and uncertainty people were feeling. The appetite really grew for these sessions and attendees provided us with such good feedback that they are now a regular part of our online calendar of events.

 

 

12.45-1.30pm – I have a chat with Ashleigh on Zoom who works at a charity within a local hospital. She had contacted me, keen on signposting people to our services and wanting to know more about us and the support we can provide. From our initial chat she then asked if I would be prepared to visit her and her colleagues to talk about sharing brainstrust’s work so they have a better understanding of our services when they are signposting patients and carers to us. We run through what I will talk about. I’ll be taking a presentation, our famous brain box and our resources to share with the staff. We have a very good relationship with other cancer charities who are always happy to signpost to us.

 

1.30-3.00pm – I have some papers to read through that have been sent prior to tomorrow’s Neurological Alliance of Scotland meeting. I sit on the Executive – the Alliance is an umbrella body of organisations that represent people with neurological conditions and those who support them. There are a wide variety of neurological conditions represented and brainstrust represents the brain tumour community on this National Group.

 

3.15-4.15pm – I have some emails that I reply to. This can be anything from replying to requests for resources, answering questions, responding to queries about our coaching services, our online events or even an update from a patient or caregiver to let me know how they are. Working with a regional model of support really helps when we respond to patients and caregivers as we are familiar with local services.

 

4.15-5.00pm – I take a phone call regarding a GBM patient and clinical trials. Mel’s uncle has been diagnosed with a GBM and she’s enquiring if there are any clinical trials or other options available. A lot of our community are very pro-active and are keen to get as much information regarding clinical trials and options outside the NHS. I let her know about the high grade knowledge share group that meets monthly. The group is for anyone who wants information about treatments that sit outside NHS protocols. It’s a great group where you can ask about anything related to unproven, innovative and adaptive treatments. As this is her first time contacting brainstrust we chat about the support we can provide for her and her family including our brain box which she would like to receive. I make sure there is nothing else she is struggling with.

 

5.00-5.30pm – I write up the information from Mel and ensure that her brain box has been ordered, I also follow up with an email to her outlining what we spoke about and containing links to what we discussed. She also now has my email for direct contact if she has any further questions or just needs a chat.

I finish up my work for the day – check my to-do list and ensure it’s been all ticked off and make sure there’s nothing left that is urgent and must be done today.

Then it’s time to spend the evening with my family. Wilma has conveniently left a pile of toys at my feet so playtime with her beckons….

 

Our team may all be spread out geographically, but we work closely and share the same commitment. One of the things that sets brainstrust apart is the fact that no matter where you live you have your own designated regional support specialist, so you have a point of contact. We get told time and time again how invaluable this is – the joy of local definitely has an impact!

, ,
Reflections from Thrive with brainstrust in LiverpoolCharity News
A day in the life of the brainstrust support team: Molly, support specialist for London and the SoutheastCharity 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