The NHS and sarcoma treatment
The National Health Service has no clinical guidelines for treatment of sarcoma although accepted standard practice is based on evidence from research studies and clinical trials. The rarity of the disease means that very few hospitals have the specialist skills and knowledge to treat patients and the doctors themselves keep in touch with developments in research, sharing their own experience, so that the best understanding of how to treat patients is used everywhere.
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 the irregular referral process which applied until recently is becoming a thing of the past.
Local Primary Care Trusts (PCTs) 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.
The NHS makes some special provision for the treatment of bone sarcomas through the National Specialist Commissioning process. Six centres are currently fully funded to provide treatment - the Royal National Orthopaedic Hospital in Stanmore (north of London) and the Royal Orthopaedic Hospital in Birmingham, are the two largest. The others are at Oswestry, Oxford, Newcastle and Bristol. Patients from Wales, Scotland and Northern Ireland are usually also referred to either Birmingham or Stanmore.
Another special case is the treatment of GIST with Glivec (imatinib). The action of this drug has been so exceptional that it was licensed in both the USA and Europe in record time. The NHS in Scotland agreed its use in 2002 and acceptance in England and Wales finally came in November 2004. Many GIST patients are treated by specialist gastrointestinal cancer teams because their expertise in surgery is usually needed.