In Patient story

In 2022, Madi and Naomi got in touch with brainstrust wanting to start coaching sessions with a brainstrust Support Specialist. Naomi was recovering from stereotactic radiosurgery for an Acoustic Neuroma and Madi was waiting for further surgery for a Meningioma.  Jodie, brainstrust Head of Support, who was coaching them both separately, saw some similarities in their situations and that thought they might be able to help each other.

Madi and Naomi were encouraged to contact each other and what was initially a meeting of strangers has become a hugely beneficial meeting of minds. We spoke to Madi and Naomi about their experience of being connected through our peer support programme and the impact their now friendship has had on them:

What were you hoping to gain from speaking to someone who was going through a similar experience to yourself?

Naomi: When I reached out to brainstrust I was feeling very isolated. Even with a wonderful support network of family, friends and colleagues I knew it would be different talking to someone who understands first-hand what it’s like living with a brain tumour and the effects of treatment. I hoped that connecting with someone who was in a similar situation would help me to feel less alone with those thoughts and feelings, and more able to process the changes I was experiencing in my life.

Madi: When I first contacted brainstrust I was scared. I knew I needed some kind of support to help me through some incredibly difficult decision making. brainstrust (& Jodie in particular) have been transformative, there are no words that can really capture my full gratitude).

I hoped that talking to someone who was in a similar situation would help me to feel less scared and isolated and help me in coming to accept whichever decision would be right for me.

How did you feel after your first conversation together?

Naomi: When I met Madi online I felt an immediate connection. There was a comfort and ease I hadn’t anticipated – Jodie clearly knew us well to have paired us together! It was reassuring talking to Madi, knowing that she understood what the physical and emotional impact felt like. I opened up without the fear of burdening her, something I worried about when sharing with my loved ones as they were also impacted by my health.

Madi: Incredible! Understood, enlivened, unburdened without fearing too much that I had ‘dumped’ too much on Naomi. There was an instant connection that made me feel really quickly at ease.

Naomi ‘got’ everything I was talking about, and I could understand all she was experiencing too. It felt a genuine meeting of hearts and minds.

I felt free from any judgement, Naomi listened to understand, and I felt she supported me in any decision that would be right for me.

What impact has the friendship had on your ability to manage living with a brain tumour?

Naomi: I’m not sure what I’d have done without Madi! We found each other at the hardest point of my life – the surgery, regrowth and stereotactic radiosurgery impacted my life in ways I hadn’t prepared for.

Sharing our experiences, fears, frustrations and advice, along with tears and laughter, helped me enormously to process the changes, navigate the new normal and find acceptance.

I am so grateful to have Madi in my life and to Jodie and brainstrust for all their support and kindness.

Madi: Where to even begin? Having lived with recurring and multiple brain tumours for 30 years I found Naomi at a time when all my past coping mechanisms were not working anymore. I was struggling to see a way forward that felt achievable and fair to everyone in my life.

My friendship with Naomi has made living my life with brain tumours (and enforced retirement because of them) so much easier. There are still ups and downs, frustrations (and joys) but Naomi is only a WhatsApp or video call away and can so quickly help me regain my perspective and help me feel empowered to move forwards again.

How would you describe the connection you have?

Naomi: We have become friends, not just brain buddies!
We have a similar outlook on life and way of thinking, which means we often look to each other for reassurance. Madi just gets it.
I feel very lucky and grateful that a friendship developed beyond the peer support.

Madi: Deeply important & precious to me. I’m so grateful to Naomi for her friendship (and to Jodie for trusting her professional and ‘gut’ judgement that we would be a good fit).

I think this is in part because we have very similar outlooks & values (high expectations of ourselves and the need to be productive) as well as deeply valuing self-care (yoga, taking care of our health, movement, getting outdoors, yummy food) and having wonderful relationships with the people we love most in life (not wanting to be a burden). We can be very hard on ourselves. Having Naomi who recognises this and encourages me to be kinder and gentler with myself is a huge privilege. It’s a kind of permission I still find it hard to hear from myself or anyone else. As Naomi lives it, it feels valid and validating. The idea that I can also give this back too makes the friendship feel balanced and mutually supportive.

We also have a healthy ability to act as accountability partners – when one of us is feeling like we don’t want to bother our clinical teams but there is something we are worrying about, the other can recognise if we are not being kind to ourselves and encourage the other to follow up and not just leave it and worry. We have a healthy dose of wry humour and can be vulnerable and honest with each other about the impact of our health limitations. Shared tears and laughter are cathartic. I guess it’s summed up when I think ‘what would Naomi do / say?’ when I’m having a struggle moment and I either remember I can ask her… or seemingly magically a message from her pops up as if she already knew I needed it.

 

 

 

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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