In Do your own thing, Events, Fundraising, Fundraising Events

Date: 23 – 25 July 2021

Location: Highbridge Farm, Eastleigh, SO50 6HN

Tickets: legacy-festival.co.uk

What is Legacy Festival?

Legacy Festival is an annual three-day event organised by Lyndsey Rowe, founder of Lloyd’s Legacy. As a lasting tribute to her son, Lloyd Green, Legacy Festival celebrates family and friendship with a focus on live music, outdoor camping, exciting games and good food. It’s an event which people come back to year on year – a firm favourite in the diary, and one that we sadly missed last year due to Covid-19. With lockdown restrictions beginning to ease, we’re excited to announce that Legacy Festival will return this Summer from 23-25 July 2021. We can’t wait for you to join us!
Set on acres of land at Highbridge Farm in Eastleigh, Legacy Festival is a family event through and through. Organised by Lyndsey and her team of passionate volunteers, this annual festival is held in memory of Lloyd, who sadly passed away at the age of 34 following his brain tumour diagnosis. Lloyd was just one month away from completing a counselling degree when he was diagnosed. Sadly, he was unable to complete his course. After his passing, Lloyd’s mum Lyndsey set up Lloyd’s Legacy in support of brainstrust, and has since raised over £33,000 to provide counselling to patients and caregivers who have been impacted by a brain tumour diagnosis.

A weekend to remember

Spanning over three days, Legacy Festival is a weekend to remember! Whether you drop in for a day, or choose to stay overnight, you’re sure to enjoy every second spent with family and friends, old and new. Our team joined in the fun back in 2019, and you can step into their shoes by clicking here. Preparations for this year’s event are in full swing, and we recently caught up with Lyndsey to find out more:

Apart from the obvious challenges with Covid-19, we have had to re-map the entire festival site as the farmer has kept cattle on it over the winter and also to give us more room to socially distance. We have also sadly lost a couple of  very supportive volunteers, due to family health problems, they will be very much missed. We do have a couple of new volunteers which is wonderful and I think we will all be learning together with the new rules and set up. The incredibly talented and supportive Si Genaro will be with us as always, and will be helping Matt run the stage on Saturday and Sunday. I am really looking forward to seeing B-Funkt,  they are an incredible band and I love their horn section! All the bands are fantastic and so kind to give their time to us. We also have Chris Payn this year – a really talented and passionate young man who I can see going a long way. We are going to be selling our own wood fired pizza this year,  run by Lloyd’s brother Glenn and his friends the ‘Elite Squad‘ we have been practicing a lot for this as it is quite a skill… and the pizza’s taste so nice!!
If you’re longing for a much needed family weekend full of fun, Legacy Festival won’t disappoint. You can pre-order your discounted tickets online by vising: legacy-festival.co.uk Tickets will also be available on the day at an enhanced rate. Camping tickets are also available, allowing you to stay on-site across the festival weekend.

A remarkable legacy

To date, Lloyd’s Legacy has funded the cost of 660 counselling sessions. For those overwhelmed by anxiety and struggling to cope, counselling offers a safe and confidential space to talk through feelings, understand emotions and explore steps to make positive change. Thanks to Lloyd’s Legacy, brainstrust is able to provide rapid access to counselling, so people who need this support are not impacted by the usual long wait for such a service.
“Without counselling I would not have been able to face my neuro appointment with such positivity and hope.” – Patient
2021 is a special year as Lloyd would have been 40 on 22nd July. To continue his remarkable legacy, the team at Lloyd’s Legacy hope to raise £7,000 this year which would bring their total to an extraordinary £40,000. Just by attending this event, you can help make an incredible difference.

 

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 cancerousNon-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