In Brain News

NHS England has just published its Long Term Plan for the next ten years.

This sets out how the NHS will be fit for the future. It details the improvements to make over the next decade – whether giving every child the best start in life, improving care for major conditions or helping people to age well – and how these will be achieved, addressing the challenges that the NHS faces now.

The plan has been drawn up by frontline health and care staff, patient groups and other experts, through the 200 events that have taken place, and the 2,500 submissions received from individuals and groups representing the opinions and interests of 3.5 million people.

The full document, along with other resources, can be read at www.longtermplan.nhs.uk.

brainstrust’s response

We were excited about contributing to the Long Term Plan. Here was an opportunity to focus on what we knows matters to the brain tumour community. We consulted with you, with clinicians, with key groups such as the NCRI supportive and palliative care brain tumour subgroup.

What did we ask for?

We had to identify three top priorities; we had four:

  • Prompt diagnosis through faster access to diagnostic tests
  • For shared decision making to be embedded so that patients and carers are truly co pilots in their care
  • Enhanced support for early and phase 3 clinical trials
  • Reduction of waste, duplication and inefficiencies in healthcare delivery so that resources can be focused on integrative cancer care.

We also said that more could be done to ensure that:

  • More cancers are prevented
  • More cancers are diagnosed earlier
  • People can maintain a good quality of life during and after treatment.
  • People have a good experience of care.

We suggested things like:

  • An acceptance that GPs can refer for diagnosis
  • More and improved resources of rehabilitation
  • Quality coordinated advice and care
  • A better understanding of what is important to patients and their families
  • Access to a clinical nurse specialist and allied health professionals such as physiotherapists.

Finally, we shared ideas on how to recruit, train and retain a workforce that could deliver the changes needed and how to address the variation and inequality in access to services, treatment and care.

So we are delighted that, in some respects, your voice has been heard. People will be given more control over their health and the care they receive. With the historic divide between primary and secondary care disappearing, care systems will become integrated so that people will be able to access services closer to homes. Prompt diagnosis is on the agenda too with diagnostic centres being established.

What does this mean for our community?

As ever, if care is to be personalised and responsive as set out in the Long Term Plan, people living with a brain tumour need to be informed and engaged in their care.

Helen Bulbeck, co founder and director of policy and services at brainstrust says, “Being diagnosed with a brain tumour is frightening and at the point of diagnosis people don’t know what it is they want and need to know, what they should ask for and to whom they can turn to for help. So we will always be here to support patients and their caregivers to reduce the fear and isolation, so that they can build resilience and focus on what is important to them and what they need – no matter where they are on the pathway or where they live. Our job will never be done, no matter how great our wonderful NHS is.”

We will be keeping close to developments as the plan is put into action, and of course it is important to remember that with devolved health services in Wales and Scotland we need to make sure that care across borders does not create inequality for people living with a brain tumour.

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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