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Karen’s story

When she was diagnosed with a meningioma back in 2016, Karen remembers her consultant saying to her “you might be different” following treatment. She remembers thinking, “what on earth is he talking about? I’ll be the same old Karen!”.

Karen endured a three month stay at King’s College Hospital due to complications following surgery: “A clot formed after the op, then I contracted e-coli, and then I had to have a shunt. I don’t remember any of it”. She then underwent grueling rehabilitation for a month as an impatient at Darenth Valley and Gravesend hospitals.

The Karen that emerged after all that time was definitely not the same old Karen – she was exhausted, couldn’t communicate, used a zimmer frame and was unable to leave the house. Karen would spend her days watching TV and her existence felt utterly futile.

Then the next cruel twist of fate occurred. Almost a year to the day from her initial operation, a freak accident caused Karen to break her ankle. Now in addition to everything else that she had battled, she found that she was wheelchair bound once again and was now losing all hope. The accident hit Karen hard, and spend her spiraling downwards. Karen says: “I was in a terrible place and I wanted to kill myself. I couldn’t even think of my Brian or my sister or my kids. I said to my friend ‘I want to die, please just let me die and look after my kids’“.

Disney, meetups, and the unconditional love of a dog

Desperate to get out of the house and to do something, Karen started to attend the Medway brain tumour support group and brainstrust meetups, where she was able to meet others who understood. Against her wishes her husband Brian decided to buy her a puppy: “I said ‘I’m not having a dog, I don’t want a dog!”‘.

Brian also encouraged her to think about going back to work, something that seemed such a scary prospect, so she reached out to her manager at the Disney Store where she had worked prior to her diagnosis. “I’ll never forget how kind and encouraging he was” Karen recalls. “He said to me ‘keep going, we’ll help you’, and he allowed me to come back for half hour shifts to start with to ease me back in”. Karen was given the job of greeting people into the store, a role that was perfect for her as she loves being around people, and she could cope with the reduced hours. A sense of purpose, and ‘the old Karen’ was slowly beginning to return.

Now Karen can’t imagine life without Ozzy the dog, who has been instrumental to her recovery: “He’s my angel – I take him out for walks – it got me out of the house and I’d see people on the walk and talk to them”.

She’s now slowly increasing her hours at work, and she regularly attends the support group and meetups where she now supports and encourages others.

Moving forwards with positivity and laughter

Things still aren’t plain sailing for Karen and she has a long way to go. She’s trying to re-learn computers which she’s finding particularly challenging, and she still struggles with name recall and spoonerisms with her speech. Karen says “it’s hard, money’s not easy, but that’s the case for a lot of people. Sometimes I don’t know what to say when I’m asked a question. It’s getting better but I still get things round the wrong way”.

Now Karen enjoys the fact that her sometimes muddled speech can make people laugh, particularly her spoonerisms such as confusing the word shower with flower. She recalls the laughter provoked when she referred to Tinkerbell as ‘Winkerbell’, when talking to a young child in the Disney Store!

‘I’m stronger now’

Through the support of family and friends, the support group, meetups, and of course Ozzy the dog, Karen continues to move forward positively and with her trademark humour. She has discovered a fresh passion in helping and supporting others, which has become a strong motivator for her in her recovery. She now attends brainstrust meetups in order to support other people in a similar position to herself, and she hopes to inspire others who might be feeling the same sense of hopelessness that she once did.

Now, when Karen remembers the consultant telling her that she ‘might be different’ following treatment, she realises that she is now different, but not in a negative way. ‘I’m still the same old Karen, but I’m stronger now’.

Karen attends the North West Kent meetup at Bluewater shopping centre – please visit www.meetup.com/brainstrust/events for more information or email jane@brainstrust.org.uk

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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