In Brain News, little brainstrust

Woman wearing mask with baby

Photos of Nicci and family

Isolation and impact on family life

Hearing difficult news alone

The biggest challenge for families is that many hospitals only allow one parent/carer to accompany a child, which means that many children and their parents feel isolated from their own family, and have to deal with devastating news, difficult decisions and gruelling treatments on their own.

“I was alone when I was told my little boy had a brain tumour. I was numb,” Nicci says. “I didn’t hear anything else from that conversation. I couldn’t wait for the doctor to leave so I could call my partner. I broke down. My partner was allowed entry to hospital and we both were shown the MRI scans. The tumour was huge. My partner Tom collapsed and was unable to talk.” – Nicci Rushton, Parent Carer

Lack of social connection

We are working with teenagers who were diagnosed last year, for many of whom the first time they met any other teens with a brain tumour was at our Meetup. Covid-19 has made it very challenging to connect and this has led to lots of our teenage community feeling incredibly isolated. Parent carers are also expressing the same challenges, being unable to meet anyone in hospital.

“Practically we have a one carer rule meaning that aside from exceptionally circumstances only one adult is allowed with the child at any time during their stay.

From a patient experience side the most challenging thing is the one carer rule, this is a real struggle for families really tricky for them to manage” – Nurse Specialist.

Knock on impact on the entire family

The impact on the wider family is also severe with headline issues including isolation from siblings and children, and partners having to live apart and care in shifts. Whilst the burden is being shared physically, it is harder for families to come together to share the emotional burden and collaborate over care.

“Siblings aren’t allowed on the ward or in the Clic Sargent house which means I can go weeks without seeing my 3 year old when I’m in hospital with her brother.” – Parent Carer

“There are no visitors allowed and parents can only swap after a 2 week stay.” – Parent Carer

Join the brainstrust community to feel better connected

Here at brainstrust we don’t underestimate the value to talking to someone who has had a similar experience. Our community overwhelmingly report that a brain tumour diagnosis is frightening, isolating and bewildering. Talking to someone who has already been through the same experience can help to reduce the isolation, help to make sense of what is happening, and reduce the fear of the unknown. Here’s how can help:

“It was lovely for Sam to finally have the chance to meet up with some other children going through the same treatments and challenges as him. He had a very lonely time during his chemo as he spent weeks in isolation on the ward and didn’t have the opportunity to meet any other children at all” – Parent of teenager with a brain tumour, who attended our last Meetup for Teens.

Impact on treatments and appointments

Treatment largely seems to be going ahead as planned, with some delays around monitoring and reporting. Unsurprisingly, this is causing anxiety for the whole family. There is broad support (though with some exceptions) for remote consultations.

“My son’s routine scan when ahead on time. Unfortunately it showed he needed more surgery. He was operated on within a week. We are at GOSH as I write. The ward is much quieter then usual.” – Parent

Many appointments are being held virtually, which some parents prefer due to less travel time and reduced risk of catching Coronavirus, however some parents prefer face to face appointments. For some, remote consultations are very challenging.

“We hate telephone conversation to be honest. ‘A’ is complex and globally delayed. He never lets me to have normal conversation. He wants to hold my phone, screams if I don’t let him etc. Asking for constant attention. His nursery doesn’t have enough staff at the moment to support him, so I literally don’t have a moment to be alone. Fortunately, my older daughter gives me a hand when she can. I usually have to hide myself in the car to be able to chat.” – Parent carer

Parents also worry that they might miss symptoms of progression in phone and video consultations. They appreciate the doctor being able to see their child in person.

brainstrust is here to support you and your family

We can help you prepare for your upcoming appointments, whether you attend alone or online. Visit the little brainstrust site here. We have trained professionals that offer rapid access to coaching and counselling for older teenagers and adults affected by a brain tumour. To learn more about our coaching and counselling services, please get in touch.

Want to feel prepared, fast? Check out our latest Know How

We recently published a Know How titled “how to prepare for medical appointments as a caregiver”.

In this Know How, we will explore how you can feel prepared for medical appointments as a caregiver, how you can make the most of the time you have with your loved one’s clinical team, and some strategies to help you feel more resilient and on top of things.

Have a read of it online here. If you have any questions or want to explore any of the ideas and themes further, please contact us.

 

 

 

 

The brain tumour patient guide to care and treatment

Patient Guides

If your child has just been diagnosed with a brain tumour, our patient guides are a good starting point to gather information of what happens next and suggest questions that you could ask.

Reach each guide online  or order a brain box to receive hardcopies.

For healthcare professionals

We have heard that psychological support for many families has moved virtual and this service is stretched. brainstrust offers free coaching and counselling to all adults affected by a brain tumour. We pride ourselves in the quick access to psychological support for families, and you can refer families to our service by completing this short form.

Learn more about how we can help, read of our Support Catalogue online  or order copies online 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