In Campaign News, little brainstrust

Children’s Mental Health Week, 1-7 February

A brain tumour diagnosis affects the whole family whether a child has a brain tumour or an adult. little brainstrust is here to support all children and young people affected by a brain tumour.

The Children’s Society states that 1 in 6 children aged 5-16 are likely to have mental health problems, and 75% of young people with mental health problems are not being treated.

Unfortunately no child is protected from poor mental health, and being exposed to ill health or watching a loved one be poorly, can increase the likelihood of a child needing support with their mental health.

How Place2Be are helping

This week is Place2Be’s Children’s Mental Health Week, and the theme this year is ‘express yourself‘. We will discuss some of the awesome activities shared by this organisation below:

COVID is a stark reminder of the vital importance of planning and prevention, rather than relying on a cure. Half of lifetime mental illness starts by the age of 14. We know that providing effective support from an early age not only helps children cope with life’s challenges but can prevent problems from escalating and becoming more serious in adulthood. Schools, at the heart of our communities, provide the perfect setting to embed this supportive mindset and to ‘normalise’ discussions around mental health.    – Place2Be

Helping find children something creative can support them to share their emotions. Here are a few ideas Place2be suggest:

  • Ask them to draw how they feeling, watch this short video that explains how you can do this activity
  • Reflect back on the last year and think about what has helped them before or is there a new interest they have. It might be baking, playing a musical instrument, riding their bike, dressing up or dancing, join your child in the activity that makes them happy and praise their efforts

During lockdown Place2be suggest PACE activities every day:

    • Physical – go outside for a walk or do a home workout. It promotes healthy well-being and releases endorphins and reduces other stress hormones
    • Achieve – setting little goals and achieving them daily. This could be the parent doing the laundry or a child finishing a project. Name the activity before your meant to do it and then congratulate each other once its completed.
    • Connect – Connect with others virtually, yes it isn’t the same as seeing someone face to face but it’s nice for children to catch up with family and friends. Do you have a friend in a different part of the country or world, that could spare 10 minutes to chat with your child. A new person for them to talk might help.
    • Enjoyment – This could be anything that makes your child’s heart sing. Maybe the one-off pizza for breakfast trick? Or a slice of their favourite cake? An extra episode of their favourite TV programme? Celebrate the little wins of the day.

Supporting your child living with a brain tumour

Following a brain tumour, many children experience feelings of depression, anxiety and overwhelm. For teenagers this could be the isolation from school and friends, or grief over losing the ability to do certain activities.

Communicating successfully is hard in normal situations, and harder still when there are all the serious things to address that come with a brain tumour diagnosis in your family. Here we have some ways that you can tackle some of the challenges that you may face when talking about issues relating to a brain tumour.

  • Talk with your child. Children have overactive imaginations. If you don’t talk about this situation with your child then they will provide their own answers, which will probably be wrong. If your child doesn’t want talk to you, ask a close friend or relative that they are close to step in.
  • For professional help, talk to your child’s healthcare team or GP for a referral to a neuro-psychologist.
  • Self-care. Take care of yourself and put in place self-help strategies. For example if you like to do exercise to de-stress, tell your child why you are doing this. By taking care of yourself you are being a role model for them. Help them choose their own self-care strategies for when they feel stressed.
  • At school. Talk to your child’s teachers, as some behaviours may vary when children are with teachers and peers. Keep communication open with their teachers to best support your child.

Young caregivers

A young caregiver is  young person that may be helping around the house more when a loved one is poorly. A young carer can be a sibling of a child with a brain tumour, or the child of a parent with a brain tumour. It is important to recognise the feelings of young carers and support their mental health. Have a read of our Young Caregiver Know How to find out more about how you can support young people in this situation.

Download the Young Caregivers Know How.

 

 

Supporting siblings

Finding out that your child has a brain tumour is not only distressing but it also can be confusing, isolating and overwhelming. These feelings may be felt by your other children too. Depending on their age, the diagnosis of their sibling may be met with increased love and care but may also result in anxiety, confusion or jealousy.  Therefore, it is important to communicate and support each other during this period.

  • Talk to them and ask them what is worrying them, and it’s okay to say you don’t know to their questions. Siblings are as confused as you are. Be as honest as you can be, information is best coming from you than Google.
  • Siblings may feel isolated due to long stays in the hospitals. COVID has made it harder than ever for families to visit anyone in hospital. To alleviate this try and organise regular calls with siblings, make time for virtual games or try sending letters. If you are the parent on the ward, dedicate 10 minutes of time, on the phone or Zoom, where it’s just you and your child that is at home. Make time for 1:1 attention and it will make a huge difference.

We know it is hard explaining a brain tumour and holding the conversations that come with it. We have a guide called ‘How to Hold a Difficult Conversation’ that helps families clear their thoughts and identify how they are feeling, so that they can hold these hard conversations and be in control. Order a hardcopy for free by emailing hello@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