In Charity News

On Friday 9 June patients, caregivers, health professionals and local organisations joined us for a day of connection and empowerment at Thrive with brainstrust in Brighton. The day brought opportunities for sharing experiences, connecting with others, learning from speakers, building resilience, and improving wellbeing.

We started the day with a peer networking session introduced by one of our fantastic peer supporters, Andy. Andy spoke about his experiences of receiving peer support and now volunteering as a peer supporter himself. The session allowed everyone to share what had brought them along to the day and what their brain tumour journey has looked like so far. The group discussion was incredibly supportive and lots of connections were made between attendees as they spoke with others who really got it.

“Everyone was in the same boat and I didn’t have to keep explaining things. I felt normal for the first time since my diagnosis.” – Patient

Jane Rose-Land, a Nutritionist who regularly features on our online events calendar, kindly travelled down from Norfolk to be the morning keynote speaker. Jane started the day with an interesting talk around the how and why of blood sugar management and keto diets. Dr Bindemann, who was speaking later in the day, also brought along some tasty keto treats to try in the break to show everyone what can be achieved with baking without sugar and kindly brought along recipe bags for everyone to take home and give keto baking a try themselves!

“It was so helpful to hear the info sessions and meet others going through their journey. We can’t thank you enough.”  – Caregiver

We were then joined by our Co-Founder and Director of Services and Policy at brainstrust, Dr Helen Bulbeck, who talked about what’s at play in the brain tumour landscape and how to get involved with our PRIME programme.

“Now, more than ever, people want to be closer to research so that they can feel engaged with their care and their condition, ensuring that they understand the landscape and that they aren’t missing out.” Dr Helen Bulbeck, brainstrust

Alongside two of the morning sessions was Yoga, run by Xenia, a local yoga instructor from BrightonYoga. Xenia made the sessions very accessible, helping those who attended to re-centre and unwind.

“It was great seeing so many people making really valuable connections with those around them, scribbling down information that was meaningful to them from what the speakers were saying and un-winding in the yoga sessions.” – Molly, brainstrust

One of our fantastic brainstrust volunteers, Damon, kicked off the afternoon speaking about learning to adapt + flow with life when you’ve been diagnosed with a brain tumour. Damon shared reflections on his journey and what’s made all the difference for him along the way.

Dr Neil Bindemann then joined us to speak about person-centred lifestyle health solutions; exploring what it means be trauma informed, emotional health and the impact of hearing life altering medical news.

“Thank you very much for putting on a great day and for providing so many useful tools and informative sessions from all types of areas impacting brain injury.” – Caregiver

Alongside this Laura, brainstrust support specialist for central south England, ran a fatigue workshop. Laura talked through the impacts of brain tumour related fatigue and some strategies to help manage this.

The day finished with Dr Patrick Murphy, our afternoon keynote speaker who had kindly travelled down from UCLH in London to talk about working with behaviour and emotional changes. Dr Murphy was able to talk about his years of experience working as a Principal Clinical Neuropsychologist to explore managing executive function and emotional difficulties for those living with a brain tumour.

“It was so great for Molly and I to meet so many members of our community in person and so brilliant to see connections forming and strengthening. I had so many inspiring conversations during the day and took away such fantastic ideas for future brainstrust events and projects.” – Laura, brainstrust

I extend big thank you to everyone who came along to the event and to all of our wonderful speakers and volunteers that helped to make the day so interesting and accessible.

Thrive with brainstrust wellbeing days is a series of events that will be popping up across the UK over the coming year. Visit our eventbrite page to find out more about upcoming events.

Hope to see you at one of our events soon!

Molly
Support Specialist for London and the south east, brainstrust
molly@brainstrust.org.uk

, , , ,
The Phase II ARISTOCRAT Trial Utilises Cannabinoids to Treat GlioblastomaBrain News, Brain Tumour Data, Research News
Tea and wee bletherEvents, Past Events, Patient & Carer Events

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