SUPPORT IS NEEDED needed on a substantial scale, and needed now
“I put it to the House that the issue of brain tumours is under- debated, under-reported and under-funded. In this Parliament, the issue has attracted minimal—dare I say it, derisory—attention… A score of charities - through a plethora of fund-raising methods - finance research. In short, there is no ground whatsoever for complacency. In any case, charitable effort can only ever be a supplement to, not a substitute for, public financial support. That support is needed, needed on a substantial scale, and needed now.” John Bercow, Chair of the brain tumour All Party Parliamentary Group, House of Commons, April 2004
Brain Tumour Research charities have been lobbying MPs since January 2004 when representatives from UK brain tumour charities - Ali’s Dream, Ellie’s Trust and Hammer Out - agreed to meet their MPs and seek their support to raise awareness within government.
The three MPs pledged their support with Ali’s Dream MP for Buckingham, John Bercow securing the first ever debate on brain tumours in the House of Commons on April 26th 2004.
Ali’s Dream then invited all UK brain tumour charities to write to their local MPs advising them of the issues and inviting them to attend. As a result of this initiative, letters were sent to 415 of the 646 MPs throughout England, Wales, Scotland and Northern Ireland.
In July 2004, Ellie’s Trust’s local MP, Bob Blizzard, MP for Waveney, tabled an Early Day Motion – paying tribute to the work of UK brain tumour charities. The group wrote to their MPs again and this time attracted 119 signatures.
Over a cup of tea following the adjournment debate, John Bercow suggested that the group held a reception in the House of Commons. This went ahead on 26th October 2004 and was entitled Brain Tumours: Earlier Diagnosis and Earlier Treatment. Every MP was invited.
At this stage Schering Plough (the pharmaceutical company who market the drug Temozolomide) offered their support, advice and help with funding the MPs reception. They asked for nothing more than recognition for their support. In particular they provided access to their lobbying consultants Butler Kelly who have been providing lobbying advice ever since.
Every MP, as well as those representatives of the House of Lords who are interested in health matters, were invited to the reception. The event was hugely successful with 20 MPs attending. John Bercow suggested that, as a result of the obvious interest, he would set up an All Party Parliamentary Group for brain tumours.
John set the date for the inaugural meeting as 11th July 2005. By the time of this meeting, 43 MPs had signed up to be a member of the brain tumour All Party Parliamentary Group following contact from Sue Farrington Smith of Ali’s Dream and John Bercow’s office. John invited Ali’s Dream to provide the secretariat, with Sue co-ordinating the groups’ activities.
In order to get the best out of the All Party Group, the Brain Tumour Research member charities held a workshop and invited specialists to help define where the group should prioritise their attention.
It was agreed that Brain Tumour Research would specifically call on the brain tumour All Party Parliamentary Group to focus their attention on the following:
To increase the proportion of spending on brain tumour research through both the Medical Research Council and Cancer Research UK.
To ensure that the relevant NICE (National Institute of Clinical Excellence) guidelines are fully implemented by 2006 to include the introduction of a national brain tumour registry and a rolling audit process.
To ensure that the focus on brain tumours should include all brain tumours: high grade, malignant, low grade, benign, primary and secondary.
To ensure that access to treatment is consistent across all treatment centres with no restrictions due to budget.
The first business meeting was held on 19th December 2005 focusing on the particular issue of treatment disparities and where gaps exist. Professor Garth Cruickshank (Professor of Neurosurgery at Queen Elizabeth Hospital, Birmingham), and Dr Barry Pizer (Consultant Paediatric Oncologist at Alder Hey Children’s Hospital, Liverpool), made presentations and outlined among other issues:
that brain tumours are desperately under-funded
the difficulties in co-ordinating patients into trials
treatments are expensive but can make a difference
the NHS is falling behind the rest of Europe
As a result of this meeting, John Bercow suggested he table another Early Day Motion and table Parliamentary Questions relating to the issues raised by Garth and Barry.
The Early Day Motion was tabled in January and since then Early Day Motions have been tabled annually.
In March 2006, Jeremy Wright, MP for Rugby and Kenilworth, secured a further adjournment debate. He had been motivated by his constituents, George and Karen Archer, who lost their two year old son Thomas to a brain tumour in October 2005.
Jeremy Wright raised the issues of the need to identify far more successfully brain tumours at an early stage and the importance of effective research. He pointed out that ‘the NHS spends less on brain cancers than on other cancers, leaving a gap to be filled by the voluntary sector.’
John Bercow used the debate as an opportunity to raise the issues regarding the National Institute of Clinical Excellence’s recommendation, which at that time was NOT to fund temozolomide and carmustine implants for newly diagnosed high grade patients.
He also used the opportunity to invite the responding Minister of State for Health Services - Rosie Winterton to an All Party Group meeting.
In July 2006 at the second APG meeting - Rosie Winterton, the Minister for Health Services, and Mike Richards, the National Cancer Director, accepted John Bercow’s invitation to join us. Professors Garth Cruickshank and David Walker (Professor of Paediatric Oncology at Queen’s Medical Centre, the University of Nottingham), along with representatives from UK Brain Tumour Charities, presented some of the issues. Mike Richards and Rosie Winterton agreed that now is the time to bring more focus to ‘rarer’ cancers and recognise that the