Lobbying
NICE Update
What can I do?
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Lobbying
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NICE Update
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What can I do?
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UK brain tumour charities have joined forces to raise awareness and lobby government and make them aware of the issues faced by the brain tumour community. We are delighted that under the chair of John Bercow MP for Buckingham, the All Party Parliamentary Group (for which Ali’s Dream is providing the secretariat) is supporting us in our cause and hope that together we can make a real difference during 2006.
Established in July 2005, the group met for the first official meeting on 19th December 2005, to discuss key issues in the fight for greater access to treatment for brain tumour patients. Presentations were made by Dr Barry Pizer, Consultant Paediatric Oncologist at Alder Hey Children’s Hospital and Professor Garth Cruickshank, Professor of Neurosurgery at Queen Elizabeth Hospital, Edgbaston.
- The NHS expenditure on brain tumour patients of £16,000 is well below that spent on other cancers such as lung and breast.
- NICE (The National Institute of Clinical Excellence) has recognised that brain tumour patients do not receive equitable and best care in the UK and is currently producing guidance, but this will be too late for the hundreds of patients currently being treated whose prognosis of surviving beyond twelve months is poor.
- Although approved in Scotland and other European countries, recently licensed drugs that can support many brain tumour patients are not widely available in the UK as they have not been approved by NICE. The final decision by NICE is planned for August 2006 and once approved it can take up to three years to be fully implemented throughout the NHS.
Neuro-oncologists, neuro-surgeons, and other brain tumour experts are faced with the moral dilemma that they can inform their patients that licensed drugs are available but that they cannot be provided on the NHS due to funding restrictions. Clinicians have to write to their Primary Care Trusts and ask for exceptional funding, which is often refused.
Members committed to raising the profile of brain tumours amongst parliamentarians to ensure greater funding and greater access to treatment for brain tumour patients. An Early Day Motion was tabled in January and has already attracted 81 signatures.
12 March 2006