In Charity News, Uncategorized

It is mid-summer 2017 and Pablo Lievano is fishing. It is early in the day – the best time to fish, and also to plan for the busy day ahead. Waist-deep in the cool water he delicately casts his favourite hand-tied fly ‘Pablo’s Demon’ into the current.

 

This moment of calm was shattered by a seizure. Luckily Pablo made it safely to the riverbank and to help. The devastating diagnosis of Glioblastoma rapidly followed with Pablo hearing the words “you have a brain tumour” in September 2017. It is this tumultuous opening where our story starts predicating an incredible collaboration and friendship.

Pablo was determined not to let his diagnosis impact negatively on the time he had ahead of him. He set out to live life to the full, surrounded by family and friends, and seeking solace in fly-fishing. Following early fears, Pablo’s resilience was buoyed by his diagnosis and he developed an incredible determination to become the ‘captain of his cancer’. Resolutely he focussed on his own and his family’s wellbeing. He tackled the challenges that he could proactively, passionately and with vigour. But he did not stop here. He set out to inspire as many others on the same journey to do the same.

 

 

Pablo contacted brainstrust early on his journey as he explored holistic support beyond the discussion of treatments and trials that fill hospital clinics. Unusually though he contacted brainstrust less to seek help, and more to establish how he could help others.

 

Pablo took his story and his mission to his workplace, to the Prime Minister, to the Queen, and even to the Pope whose blessing he received. He worked selflessly to raise awareness of the importance of wellbeing when you are living with brain cancer. And in parallel, with his ‘A-team’, he helped hundreds of others who were walking in the same shoes. He painted an inspiring and sometimes formidable picture that showed that nearly anything is possible when you put your heart and soul behind it. Through his tenacity Pablo worked with his doctors to access hard-to-get and early stage treatments. These included Tumour Treating Fields (TTF), radiosurgery and Cannabinoids. True to form he tried them and reported on the effects honestly so that others could learn from his own experiences. He threw everything he could at overcoming his brain tumour so that he could enjoy a longer life with his family, but with always a weather eye on the impact that these treatments were having on his wellbeing.

It was Pablo’s passion and our shared belief that ‘first we are people, second we are patients’ that led us to work collaboratively on the Wellbeing events at Cliveden House. These have helped well over 100 people directly and are one of the highest scoring events on the brainstrust calendar in terms of direct impact for participants. Only Pablo’s tenacity and good humour could have unlocked the doors of such a special venue and made it accessible for our community, but he did not stop until Cliveden pledged to nominate brainstrust as its charity of the year.

With family, friends and colleagues, Pablo fundraised tirelessly and with single-minded focus on his aims. He secured over £8000 for wellbeing projects that will directly benefit people with a brain tumour.

Pablo was one of us. He was a true member of our community, but he was also one of our community’s greatest advocates. He was unafraid to challenge the status quo: anything but a holistic approach to brain tumour care was unacceptable. And it is in this outlook that his legacy will become a rich part of brainstrust’s story for years to come.

From the point of his diagnosis Pablo told us repeatedly that he had newfound purpose and vigour, and that he had found his true calling in helping others. His diagnosis brought him new meaning. But the brightest of stars only burn for the shortest of times, and last week Pablo passed away. He died of his brain tumour during the night on Wednesday 31st July, and is survived by his wife Maria, and young son, Sebastian.

You can find out more about the events that Pablo helped to make happen here.

Read a write up of the most recent event here.

If you’d like to donate to fund more of these events in Pablo’s memories, please click here.

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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