Follow-up support

Some time may have passed following your diagnosis, and while you no longer find yourself in the shock of new, you may still find yourself needing a little extra support to help you live the life you want. Sometimes, knowing what you can expect in terms of follow-up care can help you to feel better prepared and more in control.

What is follow-up care?

Follow-up care is the transition from your initial diagnosis and treatment plan to living with your diagnosis for the longer term, when you may not have such close contact with your clinical team. It can feel a little like you have been cast adrift. It’s okay to feel like this. Your treatment plan may have included surgery, radiotherapy or chemotherapy, or you could be on active surveillance. Whatever treatment you have, it is important to know what is next.

The optimum standard of care according to the NICE Improving Outcomes Guidance for the follow-up phase of care includes:

  • routine imaging
  • regular clinical reviews to assess changes in your physical, psychological and cognitive well-being
  • ready access to assessment and rehabilitation services for problems such as epilepsy, headaches, and speech or visual problems
  • ready access to specialist neuropsychology and neuropsychiatry services
  • immediate access to specialist equipment that would assist rehabilitation as necessary
  • clear information on who to contact and how if you are concerned about your condition
  • follow-up as close to home as possible.

The above is the minimum level of care that you should expect at this stage. However, sometimes, for a variety of reasons, our healthcare service may not be able to meet these standards.

These standards of care have been taken from our ‘Follow-up’ patient guide. Our patient guides are a brilliant resource designed to help guide you through the patient pathway and know what your options are.

Access our patient guide on follow-up care

How can I access the support I need?

Hospitals often have different services that they are able to provide, and different means of being able to provide them. For things such as routine imaging and clinical reviews, these will be organised by your clinical team at intervals agreed by them, and hopefully in discussion with you, based on your diagnosis and condition. For some of the other services detailed above, these may include referrals to other departments or services.

Here are some tips to ensure you have clarity on what support you can get:

Ask questions. This may sound simple enough, but often in a medical appointment, you are there for a specific reason, such as finding out the result of your surgery or latest treatment, and it can be difficult to think of what questions to ask about follow-up care. Feel prepared by sitting down for a few minutes the day before your appointment and writing down the questions you want to ask.

There are some great suggestions in our patient guide

Keep a record of your symptoms and things that you feel you need support with. Our ‘Who’s who in your clinical team’ guide can help to give you an overview of who in your team might be able to help.

Access ‘Who’s who in your clinical team’ guide

Speak to brainstrust. While we won’t be able to give you medical advice, we can help to elicit the questions that you want to ask. We can also signpost you to who can help and provide you with information and resources so that you feel more in control and involved in your clinical care.

Find your regional brainstrust Support Specialist

How can brainstrust help?

  • We can use our coaching models to help you focus on what matters to you the most at the moment and achieve clarity.
  • We can signpost you to the right information and resources to help you make informed choices and decisions, and point you in the right direction.
  • We run webinars and workshops on topics that are important to you when you are living with a brain tumour diagnosis.
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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