In Charity News

Picture of piggy bank with coins to illustrate theme of cost of living.We know that life may feel unsettling at the moment for a variety of reasons. Our previous blog post includes tips about living with uncertainty, and we wanted to continue the focus, this time concentrating on the cost of living crisis. The rising prices of fuel, energy and food are arguably challenging for us all, but having a brain tumour diagnosis in your life can make everything much harder to deal with. 

 

This blog post aims to serve as a resource of links and support – both from our own website, and others – which you may find helpful. Don’t hesitate to get in touch if you’d like to speak to one of us; we’d be happy to help further.

 

Know more with our Know HowsKnow how cover: how to deal with money worries

Our Know Hows are quick-read information sheets which you can download from our website here.

Our Money Worries Know How is a great place to start if you’re feeling overwhelmed (as is the Dealing with the Overwhelm one!). It covers practical steps you can take to gain more clarity on your financial situation, like ‘chunking’ down the anxiety. As well as guidance on investigating where you could apply for reductions in taxes, or benefit support. Our Money Matters page is also a good starting point, detailing all our relevant financial support.

 

Welfare and benefits advice

Know how cover: finance and benefits

Eric is our brilliant brainstrust benefits advisor. Whether it’s support with making an application, or filling in a form, a chance to check that you’re receiving all you can and should be, or simply a not knowing where to start, if you feel you need to speak to someone one-to-one, Eric will be happy to help. Feel free to contact us and we can put you in touch with him. You can also search for benefits advice – and other services – in your area, via our handy Brain Tumour Hub. 

 

Financial fail-safes

Head to the cost of living section on Gov.uk to find out about the available support relevant to you, whether that’s bills and allowances, income and disability benefits, or housing and travel advice. Turn2us is a national charity offering practical help if you’re struggling financially. They offer information about benefit entitlements, available grants, help with energy and water bills, and ways to speak to a local advisor. It’s also fair to say that Martin Lewis has been a guru on money matters so far. His website, MoneySavingExpert, details 90+ ways to make the cost of living crisis slightly easier.

 

Available grants

There are several organisations offering grants to those in need:

For a list of other available grants, head to Buttle UK’s website. 

 

Fuel support

Regardless of your energy provider, the British Gas Energy Trust is an independent charitable trust which can help in making sure you’re receiving the benefits and services you’re entitled to. Their Bounce Back Checklist can help you maximise your income, detailing lots of local schemes and programmes to assist with energy bills advice.

 

Food and the day-to-day

Food campaigner Jack Monroe’s blog, Cooking on a Bootstrap, gives some fantastic recipes that are quick, easy, and – importantly – cheap, while also minimising waste. Check out the Community Fridge Network too, to connect with others in your local community and share food, learn new skills and reduce food waste. Supermarkets and local businesses and producers share their surplus, making sure it goes to good use. For more money-saving ideas, take a look at the Extreme Couponing and Bargains UK Facebook group. If you’d like to get your head round how different household appliances may be contributing to your energy bills, try out this comparison tool.

 

A Positive Note

To end on a high, the Cost of Living Archive on Positive News is great to scroll through if you’re wanting some hopeful, optimistic content to consume. Expect positive stories about local initiatives which assist communities with cost of living-related issues.

 

We’d love to hear from you. Do you have any top tips to share, or know of other grant-providers or financial services that are helpful in these challenging times? Let us know by dropping us an email at hello@brainstrust.org.uk. 

 

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If you do one thing this Christmas… just do that. One thing.Charity News
Finding sanctuary: Tracey’s storyPatient story

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