Brain Tumour Manifesto

Brain Tumour UK has launched a manifesto for everyone affected by a brain tumour. You can help it make an impact in the Houses of Parliament by asking your MP to support the manifesto.

In partnership with the Samantha Dickson Brain Tumour Trust, Brain Tumour Research and the International Brain Tumour Alliance, we launched the manifesto on 14 October 2010 at the Houses of Parliament.

You can help

Now, James Arbuthnot MP, chair of the All Party Parliamentary Group on Brain Tumours, has tabled an Early Day Motion (EDM) calling on MPs to support the manifesto. All you need to do is to write to your MP, asking them to sign the EDM.

An EDM is a kind of Parliamentary petition which helps to raise awareness and can, if it gathers enough momentum, be debated by MPs. We hope to persuade the new Government to work in partnership with us to improve outcomes in diagnosis, patient care and research.

To write to your MP, first visit the Parliament website and use your postcode to find their name and address. You can also email them. Then, tell them about the EDM and our manifesto in your own words, using our draft letter as a template.

Please send us a copy of your letter or email, too, and let us have a copy of any reply that you receive. You can email them to us or post them to Manifesto Campaign, Brain Tumour UK, Tower House, Latimer Park, Chesham, Bucks HP5 1TU.

Brain Tumour Charter

Brain tumour charity supporters call for better healthcare standards outside the Houses of ParliamentOn 29 March 2011, Brain Tumour UK and other charities launched a Brain Tumour Charter calling for implementation of the best practice care for patients. Although the best practice was recommended by NICE in 2006, implementation has been patchy. A review of implementation began in April 2011 and we want to ensure the benefits of that review are not lost during the Government's NHS reforms.

More than 150 supporters attended and met dozens of MPs. The charter calls for:

1. Care should be properly commissioned and coordinated across healthcare services

2. A dedicated neuroscience team should be involved immediately if a scan shows a possible tumour

3. Specialist surgical, laboratory and scanning services should be readily available at key stages to help with diagnosis and care decisions

4. Specialist help should be available for other problems linked with CNS tumours such as neuropsychology

5. Professional specialist help should be rapidly available if a person’s needs change

6. Face-to-face communication with dedicated professionals and high-quality written information should be available

7. Systems should be in place to ensure experience and knowledge about brain and CNS tumours can be shared between professionals

8. Nationally agreed shared protocols should be developed, implemented and audited

9. That these guidelines should be mandatory on future commissioning arrangements

Why we need to make a difference

Your support for our work is essential. Around 8,600 primary brain tumours are registered in the UK every year [1], although this is thought to be an under-estimate. The National Institute of Health and Clinical Excellence (NICE) report that “almost half of intracranial tumours are not recorded by cancer registries” [2] and research by the charities [3] has suggested that the true number is closer to 16,000. Secondary tumours in the brain are not recorded, but estimates put these as high as 32,000.

The manifesto calls on Government to work in partnership with the <b>brain tumour</b> charities to:

  • Ensure early diagnosis and treatment for everyone affected by a brain tumour [4];
  • Implement the best practice guidance for treating people with the disease [5];
  • Significantly increase Government investment in brain tumour research [6].

The manifesto sets out one or more practical solutions to be monitored, to measure improvements towards the lives of everyone affected by a brain tumour.

James Arbuthnot MP, accepting the manifesto on behalf of the All Party Parliamentary Group, commented: “With around 16,000 people in the UK affected by a brain tumour each year, and the number of secondary cancers in the brain thought to be increasing, much more needs to be done to diagnose and treat these diseases more effectively. This manifesto is much more than a plea for funds. It brings together intelligence from across the field and sets out a range of measurable solutions which have the power to transform the lives of those affected by a brain tumour.”

Media coverage

Thanks to our supporters, the Manifesto was featured across a wide range of media. Here's some TV coverage streamed from our YouTube channel.

Lucie Stevenson from Hatton, Derbyshire, tells BBC East Midlands why she's backing the Manifesto. Read her story here.

BBC Oxford reports on Sam and Pat Ankerson, from Goring on Thames, who visited Westminster with Brain Tumour UK to meet MPs. Read more about their story here:

1. Cancer Statistics registrations: Registrations of cancer diagnosed in 2007, Office for National Statistics, England. Series MB1 no.38. 2010, National Statistics: London; Cancer Registrations in Wales 2007, Welsh Cancer Intelligence and Surveillance Unit, 2010; Cancer of the Brain and CNS: Scotland: trends in incidence 1985-2007, ISD Scotland, 2010, Information and Statistics Division, NHS Scotland; Cancer Incidence and Mortality, Northern Ireland Cancer Registry, 2010.

2. Improving Outcomes for People with Brain and Other CNS Tumours: The Manual. Guidance on Cancer Services, National Institute for Health and Clinical Excellence, 2006.

3. Register my tumour, recognise me, Brain Tumour UK, March 2009.

4. The median time from symptom onset to diagnosis of a brain tumour in children in the UK is 3.3 months, whereas the best currently published results from Poland and USA are less than 5 weeks. Sources: Wilne SC, J. Kennedy, C. Jenkins, A.Grout, J.Mackie, S.Koller, K. Grundy, R. Walker, D. Progression from first symptom to diagnosis in childhood brain tumours: a multicentre study (Abstract). Archives of Disease in Childhood. 2007;92 (Supp 1):A69; Perek D, Drogosiewicz M, Dembowska-Baginska B, Perek-Polnik M, I F. Diagnostic problems in children with primary brain tumours treated in Children’s Memorial Health Institute. Pediatria Polska 2005;80(1):29-36; Pollock BH, Krischer JP, Vietti TJ. Interval between symptom onset and diagnosis of pediatric solid tumors. Journal of Pediatrics. 1991 Nov;119(5):725-32.

5. In 2006, NICE published its Improving Outcomes Guidance for Brain and CNS Tumours, but implementation of the guidance has barely started.

6. Brain tumours claim more men under 45 and women under 35, and more children, than any other cancer. On average, more years of life are lost to a brain tumour than any other cancer [see 7, below]. Yet there is strong evidence of a significant deficit in brain tumour funding compared to other cancers, such as leukaemia, which claim fewer lives.

7. Burnet, N., et al., Years of life lost (YLL) from cancer is an important measure of population burden and should be considered when allocating research funds. British Journal of Cancer, 2005. 92: p. 241-245.