The NHS and sarcoma treatment

The National Health Service publishes no standards for sarcoma treatment. There are no clinical guidelines for treatment although accepted standard practice is based on evidence from research studies and clinical trials.

Standards for the treatment of local patients are currently decided by the local Primary Care Trusts (PCTs) who are responsible for funding treatment for patients living in their area. In practice they club together to buy the services of specialist units for the treatment of rare diseases, although the evidence that every PCT has specific treatment agreements in place for sarcoma is sketchy.

In each region of the UK cancer services are co-ordinated through cancer networks. Not all networks have a sarcoma specialist unit within their borders but all the Network Clinical Leads will know of their closest specialist centre and it appears that the irregular referral process which applied until recently may be a thing of the past.

The NHS makes some special provision for the treatment of bone sarcomas through the National Specialist Commissioning process. Two centres are currently fully funded to provide treatment - the Royal National Orthopaedic Hospital in Stanmore and the Royal Orthopaedic Hospital in Birmingham. This has the effect that there are two world class treatment centres for bone sarcomas which do not rely on PCT negotiations for their funds. Similar units in Newcastle and Bristol, while not as busy, are to gain central funding from 2005.

Another special case is the treatment of GIST with Glivec. The action of this drug has been so exceptional that it was licensed in both the USA and Europe in record time. Agreement that it will be paid for by the NHS takes longer. The NHS in Scotland agreed its use in 2002 and acceptance in England and Wales is expected in late summer 2004. Currently patients receive the drug either through a funded clinical trial or through a special centrally held NHS fund.

Guidelines for the provision of services to all sarcoma patients are being developed by the National Institute of Clinical Excellence but these will not be in place until late 2005. These guidelines will include GP referral (for diagnosis and treatment), referral between secondary care and specialist units, standards expected for provision of a multi-disciplinary service, and advice on provision of support services including pathology, physiotherapy, information and support. Implementation of these guidelines will be left to PCTs.