NICE - The National Institute of Health and Clinical Excellence
| Background | NICE and Sarcoma | NICE and GIST |
NICE is the body responsible for authorising new treatments for use in the NHS. It has been set up to be independent of government ministers, although many of its investigations are determined by ministers. It looks at the clinical evidence (from practice research and clinical trials) and the economic impact of new technologies and techniques before arriving at its recommendations.
Its recommendations are binding on the NHS in England and Wales. Some of them take time to implement, particularly if it involves the re-structuring of service provision. The NHS in Scotland works differently. The Scottish Intercollegiate Guidelines Network (SIGN) produces practice guidelines for doctors and decisions on paying for new drugs are taken by the Scottish Medicines Consortium.
The NICE process is consultative and can become very extended, especially where new treatments are costly. The economic assessment is always made from the viewpoint of the NHS and there are complex academic methods which try and put a value on improved patient quality of life. Patient groups such as Sarcoma UK are invited to contribute evidence and there are patients on many NICE consultative groups.
NICE decisions about cancer drugs have recently become more contentious as it has become quite clear that NICE is making recommendations on the basis of overall cost, and allowing Primary Care Trusts (which fund treatment) to make decisions without full regard for the benefit of each individual patient.
Three sarcoma patients have recently served on the NICE Guidelines Development Group for Sarcoma. This has looked at the structure of service provision in the NHS to get the best possible outcomes for patients with sarcoma.
The recommendations of this group were published in March 2006 and are due to be implemented by the NHS in England and Wales in the autumn of 2006.
Download the public summary of the recommendations, the full recommendations, and the full manual produced by NICE. Other documents are also available on the NICE website.
Sarcoma UK and GIST Support UK worked together representing patient interest on the NICE Technology Appraisal of Imatinib for the Treatment of Advanced and Metastatic GIST during 2003 and 2004.
The Guidance was published in November 2004 and while we welcomed their publication more recent research findings mean that we are now extremely unhappy about the implications for patients. Fortunately a number of Primary Care Trusts (PCTs) are prepared to review the latest evidence and a number of patients are now being treated for advanced disease in line with accepted best practice, rather than the NICE Guidelines.
If you are affected by a PCT decision to refuse treatment with imatinib (Glivec), despite the wishes of your doctors, Sarcoma UK can help present information for an appeal to your PCT. Please use our contact form.
This is a situation which is unacceptable. Representations are being made to The Department of Health and to NICE requesting a review.
The NICE Guidelines as published
The latest clinical guidance, developed by a group of GIST specialist doctors (courtesy of the Association of Upper GI Surgeons, AUGIS).
This page updated 16th April 2006