In Charity News

On Friday 23 June patients, carers, healthcare professionals and local charities gathered in Leeds for a day of connection and empowerment at Thrive with brainstrust in Leeds. In this article we share more about how the day went and how we left feeling more in control, positive and ready to face the road ahead.

The day kicked off at 11:00 with the brainstrust team welcoming attendees with cuppas and pastries, from the out there were smiling faces and engaged conversation as we all celebrated the opportunity to connect face-to-face. It was wonderful to see attendees relishing the opportunity to speak to others in a similar situation and benefit from the power of connection.

Professor Susan Short was the keynote speaker for the morning session, delivering a talk on cannabinoids in brain tumour treatment. The talk took us on a journey, first introducing us to the challenges of the landscape before highlighting the positive progress and exciting developments in current research around cannabinoids. We’ve written about the ARISTOCRAT trial that Susan delivered her talk on, click here to learn more.

Getting to be in the company of so many inspirational people made me feel extremely grateful. The vast range of topics covered, conversations had and knowledge shared made for a special experience for everyone involved. – Adam, Patient Involvement Officer

Next up it was time for lunch. This was a lovely opportunity for relaxed conversation between attendees accompanied by good food and a beautiful view of the Leeds canal.

I enjoyed the opportunity for networking with the community and other healthcare professionals. It was great learning more about brainstrust as well as  the latest technical and drug developments. – Occupational therapist

With bellies full we headed into the afternoon sessions. Ryan Matthew, who you may recognise from the silver screen since his appearance in Saving Lives in Leeds, was the keynote speaker for the afternoon. Ryan’s talk focused on novel and emerging technologies in brain tumour treatment. Ryan looked at the whole journey from diagnosis, through treatment, to recovery highlighting how technological developments can improve care. It was enthusing to hear about so many positive and exciting developments and to see how the patient experience was being put at the centre of these novel developments. Again, the Q&A session demonstrated just how engaged the brain tumour community is with developing research. It was great to be a part of such a lively and enthusiastic conversation.

It was a privilege to meet so many incredible patients and caregivers and to hear their experiences. Their determination and resilience towards such a journey is nothing short of inspirational. – Ellie, Resources Officer

We often hear bleak facts and stats when it comes to brain tumour treatment, survival and recovery. Both Ryan and Susan’s talks showed us just how much progress we are making. Reminding us that if we keep leaning in, we can secure better outcomes for the brain tumour community. Find out more about brain tumour research, and the role you can play, here.

Energised by the Ryan’s talk, we broke out into our wellbeing sessions.

The group enjoyed chair yoga with Clare as well as a mindful breathing session with Kate. Attendees from both groups returned to the main room looking decidedly more relaxed! We came away with practical, applicable skills to help us cope better with the challenges we face.

Talking to patients, caregivers, healthcare professionals and other local organisations who attended the event made the whole experience invaluable. Some of them live as far as Hull and even Manchester. I am hoping to see them again in the near future when we start hosting meetups/workshops in the Yorkshire region. –  Mariel, Support Specialist for North England

Next up we met representatives from the local Macmillan branch who spoke about how they can support people. Jill from Yorkshire Cancer Community also joined us to speak about their services. Mariel then hosted the brainstrust workshop on Behaviour and Personality change. BPC is a prevalent challenge in the brain tumour community and it’s not always easy to talk about. This workshop was a great space to break down taboo and share experiences. Attendees spoke about their challenges and coping strategies. In talking about the challenges we face, we come to realise that we are not as isolated as we thought. There’s a whole host of people who know what you’re going through and you can get support. You can find out more about managing BPC here.

The professional talks were really interesting, very well done and I like the fact they were really positive. – patient

The day’s talks were wrapped up by Adam, our Patient Involvement Officer, who spoke about our Patient Research Involvement Movement. It was another energising talk, highlighting how PRIME  has attracted £20 million of investment to brain tumour research. The talk showed how patient involvement can drive real, positive change in the research space. If you’d like to find out more about PRIME and how you could get involved with research, click here.

The talks ended in time for attendees to browse resources and chat to one another about the day, their experiences and just have a good old natter.

It was wonderful to have welcomed so many of you to event. The day showed the strength that can be found in community and connection. It also showed the many developments in brain tumour research that, if we lean in and continue working hard, can create a better future for people with a brain tumour. We’d like to say a huge thank you to The National Lottery Community Fund and players of The National Lottery for supporting us.

 

  

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Reflections from Thrive with brainstrust in MiddlesbroughCharity 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