Policy blog - 12 April 2017

From co-founding a new cancer taskforce to ensuring the Department of Health's Personal Independent Payments review takes brain tumour patients into account, discover how our policy and public affairs team has been fighting for the rights of people affected by a brain tumour.

The Brain Tumour Charity co-founds new cancer taskforce

Cancer survival is on the rise but progress is unequal – we're working to change this.

Over the last forty years the odds of living longer after a cancer diagnosis have increased substantially. But this progress masks a lack of improvement for a group of cancers left behind.

If diagnosed with a less survivable cancer - pancreatic cancer, high grade brain tumours, stomach cancer, lung cancer, oesophageal cancer, liver cancer and mesothelioma - the chance of surviving five-years or more is 20% or less (Cancer Research UK). And that loss is substantial - in 2013, less survivable cancers collectively made up a quarter of all cancer diagnoses but a staggering half of all cancer deaths.

We want no cancer left behind. So we have co-founded a taskforce of charities to look at common problems in diagnosis, treatment and care, which slow down progress and leave these cancers isolated.

The Less Survivable Cancers Taskforce will launch in May 2017.

If you would like to know more, email policy@thebraintumourcharity.org.

How will devolution in Greater Manchester affect brain tumour patients?

There has been a gradual transfer of power from the UK Government in Westminster to local decision makers in English regions, Scotland, Wales and Northern Ireland over the last two decades.

Jonathan Canty (Policy Officer) analyses how the transfer of powers over health spending from Westminster to Greater Manchester could affect the brain tumour community.

Read the blog.

Review of key disability benefit published

The Department of Health has published a second review of Personal Independent Payments (PIP). Formally known as the Disability Living Allowance, PIP is a benefit to help with the extra costs of living with a long term health condition.

We're pleased that the second review has recognised some of our concerns.

Read the full story.

Need support? We can help

Our research has shown that 1 in 2 people affected by a brain tumour face financial difficulty. In 2016, we highlighted the difficulties that brain tumour patients have navigating the application process for these benefits.

Learn more about the financial support that you may be entitled to. You can also arrange a phone appointment with our benefits clinic.

NHS England announces new research plan

The NHS has a duty to promote research to help transform the way it delivers treatment and care. A new research strategy outlines the approach, and one area of particular interest for us is excess treatment costs (ETC).

Healthcare providers have a responsibility to conduct, commission or assist the conduct of research, including helping meet the treatment costs of patients involved in charity funded research.

The process for getting those costs covered can be complicated and unclear. This can cause additional delays to research funded by public donations.

We are pleased that the strategy recognises these issues and commits to increasing training and education on ECTs for providers, as well as evaluating the use and impact of ECT guidance by these providers.

Read the NHS strategy.

Help make the change

We believe that sensible, evidence-based solutions are central to transforming outcomes for people affected by a brain tumour.

Learn more about our campaigns and how you can get involved.