Rare cancers

Commissioning is the term the NHS uses for the process of negotiation between primary care trusts (PCTs) and the hospitals who provide care, and the transfer of money to cover the costs of this care.

PCTs are responsible for commissioning the diagnosis and treatment of common cancers, in local hospitals and in the Sussex Cancer Centre. But for rarer cancers, or very specialist or new treatments, which are not provided in every cancer network, this is done by the Regional Specialist Commissioning Group. They work with hospitals in London, such as the Royal Marsden, or in neighbouring cancer networks, such as St Luke’s Cancer Centre in Guildford. This ensures that such treatments only take place at centres of excellence, where the doctors see enough patients to provide an expert service and maintain standards. These highly specialist services provided at a few specialist centre's are all known as Tertiary centres.

Sometimes a new drug or treatment becomes possible but is not currently available and routinely commissioned on the NHS in Sussex. After discussing this option with the patient, the hospital consultant would write to the PCT (or Specialist Commissioning for a service provided outside Sussex) to ask if it could be funded for that patient. The PCT has an Exceptions Panel, which considers such cases along with requests from other areas of medicine. This takes advice from the cancer network but has to consider the evidence for effectiveness of the treatment, balanced by limited funds and other possible requests for non-cancer patients, so sometimes the answer is ‘no’. There may be a slight delay before the response gets back to your consultant but everyone tries to provide an answer as quickly as possible.

GP's cannot refer patients directly to the centre's outside the network for these unusual treatments, or ask the panel to fund new treatments locally - the referral or request would have to come from your oncologist, surgeon or other specialist cancer doctor.