specialist commissioning ( which being narrowly defined only covers some of my needs) but there has been a recent adverse change in the system whereby, whilst the disease is complex, it does not follow at set pattern in each patient, it requires treatment by several specialities and different health care providers, the system currently does not allow my consultant to refer me to appropriate experts to ensure the best patient outcome. Evidence shows that the best patient outcome comes from appropriate treatment being given as quickly as possible. I have recently had 3 examples of very poor care with resulting damage to long term outcomes as the result of my local GP seeking to determine my treatment and not refering me to experts in my disease (as recommended by my consultant who is the acknowledged expert). Distrubingly. I have also been advised by the local PCT that it is the GP and not the acknowledged expert who decides my care. I would request that when looking at care for long term conditions a simplistic approach of local care is not agreed. Local health care providers, including GPs and local consultants cannot expect to be experts in all fields and if those with rare, complex diseases are required to receive local care rather than specialist care just because their disease is defined as chronic, this will result such people being denied access to the most appropriate care with likely poor health provision, poor health outcomes and possibly poor life expectancy and