Feel less alone as a caregiver

We know that being a caregiver for someone with a brain tumour can be lonely and isolating. On this page you will find information to help you feel less alone and better supported.

Becoming a Caregiver

We know when faced with a brain tumour diagnosis that it not only affects the person with the diagnosis, but also those close to them.

A Caregiver is someone who provides unpaid help and support to a family member, friend or neighbour who would otherwise not be able to manage without this support.

Many people that provide help and support to those close to them who are affected by a brain tumour diagnosis, don’t classify themselves as a caregiver.

Caring for someone with a brain tumour can sometimes be more challenging due to the complexity of the pathway, and at times the uncertainty that can come at different stages along this.

Becoming a caregiver for someone with a brain tumour can happen abruptly or creep in slowly unnoticed until one day you realise you are caring more for someone else than you are for yourself.

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Support for you

When you suddenly find yourself taking on the role of a Caregiver due to a loved one’s brain tumour diagnosis, priorities shift and sometimes your own needs take a backseat.

The role of a Caregiver can at times be complex, stressful and also isolating due to the tasks you may find yourself suddenly having to take on. These could include having to help with personal care, giving physical nursing care without any additional support, providing transport as well as providing emotional support to your loved one and trying to source information and support.

In order to care, you need to take care of yourself. Seeking out help before you really need it may help you to feel more in control and resilient just by knowing that there are options.

There are many organisations who can offer support for Caregivers. Support can come in a variety of different ways- whether that be physical support or emotional support.

For details of the organisations that may be able to help, visit our brain tumour hub: https://www.brainstrust.org.uk/brain-tumour-hub/

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Coaching to help you thrive

At brainstrust we have a team of trained coaches. We listen, listen some more and then ask questions.

We focus on helping you achieve specific immediate goals, which relate to specific areas. For example, weighing up the pros and cons of having a particular treatment, or overcoming a problem with caring. We also know that through coaching, clients can experience a sense of healing, as they make decisions about their lives.

Coaching is about developing strategies and clarity to achieve a better quality of life.

If you would like to know more about coaching or to arrange a conversation with one of our coaches, get in touch with us at hello@brainstrust.org.uk or call our helpline on 01983 292 405

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Counselling

When there is too much distress and a psychological intervention is needed, counselling can be useful.

It is suitable for someone who is struggling to cope or feeling very anxious and therefore finding it hard to focus on specific immediate goals. We have a network of counsellors who can help you make sense of your situation, so that you can make better decisions about the future.

For more information about counselling, just visit this page: https://brainstrust.org.uk/brain-tumour-support/quality-of-life/living-well-with-a-brain-tumour/counsellinghypnotherapy/

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First steps – What to do when you hear the diagnosis

The possibility that the person for whom you are caring might have a brain tumour will have been on your mind, but you never know how you will react until you actually hear the news.

You will be reeling but your ability to cope does get better – you develop systems to cope with such traumatic change. And it is so hard being the person that loves the afflicted so much that it hurts; you just want to give the person hope and try to hold it together for all around. those around you and how they will cope. You want to reassure yet you yourself are feeling very frightened.

What you want to know is that you have explored every avenue and have done everything that you can be doing to help; it is at this stage where your role as a caregiver may take on more of a ‘management role’.

Here are some tips of how you can feel prepared at this stage of the pathway:

  • Get a notebook which you can take to all appointments and take key notes- ‘My brain book’ which is included in the brain box is a brilliant way to keep all these notes organised.
  • Ask questions- refer to the ‘Diagnosis’ patient guide, which can be found here: brainstrust.org.uk/brain-tumour-support/resources/downloads/ This has some good questions to get you started, as well as information about what you should expect at this stage.
  • Find out who is in your team. By ‘team’ we mean both the clinical team, but also who can help you outside of the hospital. This can be friends or family members or charities. It is important to build a supportive team around you. This Know How will help.
  • Call us on the 24/7 helpline. We’ll be here to make sure you are confident that you are getting the best care and help you with questions (no matter how big or small) that you have- we don’t always have the answers, but we can help you work out what you need to do to get what you need.
  • Don’t forget the ‘you’ in all of this: you too need to look after yourself. You can read more about how to do this here.

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Discover our resources, designed to help you feel less alone and more in control.

Did this information make you feel more resourced, more confident or more in control?

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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