Category: Policy & Public Affairs

The report follows a debate about funding for brain tumour research in the House of Commons on April 18.

We are working with Cancer Research UK, Macmillan Cancer Support and other cancer charities to make recommendations to Government on the subject of cancer registry data.

Late diagnosis is common for people diagnosed with a brain tumour. 53% of high grade brain tumours were diagnosed as an emergency in 2013 – more than any other cancer.

Yesterday saw the Petitions Committee report on research funding into brain tumours debated by MP’s in Westminster Hall. Over 40 MPs spoke at the debate, with only standing room left as proceedings began.

A call for government action to prioritise brain tumour awareness and research funding will be debated in the House of Commons on April 18.

Ahead of the national elections in May 2016 we have launched manifestos in Wales, Northern Ireland and Scotland.

Last week, the UK Government announced changes to the eligibility criteria for Personal Independence Payments (PIP) as part of the 2016 Budget.

The e-petition calls on larger cancer charities and the government to invest more in research into brain tumours.

This March we’ll be launching manifestos in Scotland, Wales and Northern Ireland ahead of the devolved nations’ elections in May.

Finding Myself in Your Hands focuses specifically on peoples interactions with the NHS, healthcare professionals and their treatment of brain tumours and gives us an honest insight into experiences across the UK.

On Wednesday 9th December the All Party Parliamentary Group (APPG) on Brain Tumours held a meeting in Westminster to discuss the new five year Independent Cancer Taskforce Strategy. The event was well attended and several MPs came along to listen to the experiences and concerns of our supporters.

We were recently pleased to hear that the National Institute for Health and Care Excellence (NICE) will be developing a new guideline on primary brain tumours and cerebral metastases.

We would like to invite you to our meeting of the All-Party Parliamentary Group (APPG) on Brain Tumours.

Brain tumour patients are more likely to be diagnosed via a hospital A&E department than those with any other type of tumour, new figures show.

The Off-patent Drugs Bill has been blocked at its second reading in the House of Commons despite support from MPs of both parties and a number of charities and health organisations. It will be put onto the agenda for another reading in December, however is unlikely to be allocated time for debate.

One of our fantastic Young Ambassadors April Watkins recently met with Caroline Lucas, the country’s first Green Party MP in Brighton, where she was able to share details of our HeadSmart campaign and her personal experiences as a young adult going through treatment for a brain tumour.

The potential benefit of the Off-patent Drugs Bill to people affected by a brain tumour has been highlighted in an editorial featured in The Telegraph. The paper also features a letter in support of The Bill signed by 40 clinicians including Professor Susan Short who is leading a clinical trial to investigate the effect of hydroxychloroquine on high grade gliomas undergoing radiotherapy.

The interim report of the Accelerated Access Review, a UK Government review looking at ways to speed up patient access to new drugs, was published on the 27th October.

Cancer Research UK have released some figures that demonstrate how getting a cancer diagnosis in a timely manner varies across the UK.

The Northern Ireland Cancer Patient Experience Survey contains data on the experience of 3,200 cancer patients between 2014 and 2015, including 28 patients with high-grade brain tumours.

On Sunday, an Independent Cancer Taskforce published its report, Achieving world class cancer outcomes: a strategy for England. This sets out 95 recommendations for the delivery of services for cancer by the NHS in England for the next five years. (Tuesday July 21).

If you have a brain tumour, should it be a luxury to know you will always be able to talk to one person in your medical team who knows about brain tumours and – crucially – knows about your brain tumour and its impact on you?