Parliamentary Interaction
A UK coalition of charities [1] has today [14 October 2010] called on the Government to join society’s fight against brain tumours.
Brain Tumour UK, the Samantha Dickson Brain Tumour Trust and Brain Tumour Research, with the International Brain Tumour Alliance, have launched a manifesto [2] for everyone affected by a brain tumour. They hope to persuade the new Government to work in partnership with them to improve outcomes in diagnosis, patient care and research.
Around 8,600 primary brain tumours are registered in the UK every year [3], 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” [4] and research by the charities [5] 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 new manifesto will be launched at a reception [6] attended by the All Party Parliamentary Group on Brain Tumours [7], scientists, clinicians, and many brain tumour patients and their families.
The manifesto calls on Government to work in partnership with the brain tumour charities to:
- Ensure early diagnosis and treatment for everyone affected by a brain tumour [8];
- Implement the best practice guidance for treating people with the disease [9];
- Significantly increase Government investment in brain tumour research [10].
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.
Rt Hon 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.”
Notes to Editors
For more information or to arrange an interview please contact:
Louise Evans, Loop PR, on 07891 242476 or 01252 725346, or email louise.evans@loop-pr.co.uk
1. The charities are:
Brain Tumour UK
Contact: Trevor Lawson, Head of Communications, on 07876 685404 or by email.
Samantha Dickson Brain Tumour Trust
Contact Paul Carbury, Chief Executive, on 0845 130 9733 or by email.
Brain Tumour Research
Contact: Sue Farrington-Smith, Director, on: 07850 832301 or by email.
The International Brain Tumour Alliance is a global network of individuals and organisations.
Contact: Kathy Oliver, Co-director, on 07775 712569 or by email.
2. Copies of the manifesto are available online at the websites above or contact Louise Evans, Loop PR, on 07891 242476 or 01252 725346, or by email
3. 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.
4. Improving Outcomes for People with Brain and Other CNS Tumours: The Manual. Guidance on Cancer Services, National Institute for Health and Clinical Excellence, 2006.
5. Register my tumour, recognise me, Brain Tumour UK, March 2009.
6. The Reception is being held in the Members Dining Room of the House of Commons from 4pm-6pm.
7. A new All Party Parliamentary Group on Brain Tumours has been formed under the chairmanship of James Arbuthnot, MP for North East Hampshire.
8. 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.
9. In 2006, NICE published its Improving Outcomes Guidance for Brain and CNS Tumours, but implementation of the guidance has barely started.
10. 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 11, 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.
11. 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.
A submission from the British Neuro-Oncology Society to the
All Party Parliamentary Group on Cancer.
Inquiry into cancer inequalities by Colin Watts (on behalf of BNOS)
Inquiry into Cancer Inequalities
Dear All
International Brain Tumour Awareness Week was earlier this month and to tie in with this period, the IBTA asked Lord Carlile of Berriew QC to table a Parliamentary Question (PQ) in the House of Lords about brain tumours.
Lord Carlile very kindly agreed to do this and his PQ and the response are pasted in below. The PQ and response appear in Hansard, the Parliamentary order paper (dated 12 November) and can be accessed via this link.
With kind regards
Kathy
============================================================================
Health: Brain Tumours
Question
Asked by Lord Carlile of Berriew
To ask Her Majesty's Government what steps they propose to meet the challenges associated with the diagnosis and treatment of brain tumours, in the light of the initiatives provided by International Brain Tumour Awareness Week.
[HL6296]
Baroness Thornton: The National Institute for Health and
Clinical Excellence published Improving Outcomes guidance in
2006 on the healthcare that should be provided for people with
brain tumours and other central nervous system (CNS) tumours
to ensure the
12 Nov 2009 : Column WA213
best outcomes, including early diagnosis. It is for the
National Health Service locally to implement this guidance,
and the National Cancer Action Team continues to work with the
NHS at local level to agree implementation plans.
The National Cancer Peer Review Programme is currently
developing measures for brain and CNS tumours, which will be
incorporated into the Manual for Cancer Services. Other work
includes supporting the British Neuro-Oncology Society with
the development of national guidelines for rarer brain
tumours. It is planned that all brain services in England will
be reviewed against these measures from April 2011 in order to
establish how well the Improving Outcomes guidance has been
implemented.
In September 2009, we announced plans to further improve access to diagnostics in primary care by offering all patients access to tests and results, which can confirm or exclude cancer within one week. Our aim is to start rolling this out from 2011-12 over a five-year period.
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