Rare Disease UK
There is NHS consultation underway on improving training, diagnosis and coordinated treatment of rare and chronic diseases through the UK Department of Health. I think reporting and examining the patient's experience is the key to improvement, not the rhetoric http://longtermconditions.dh.gov.uk/have-your-say/
Rare Disease UK is one way for us to contribute to solving the problems and get access to help. http://www.raredisease.org.uk/policy.htm
If it's not going well for you just now in your primary care trust, find someone you like in the PCT Patient Liaison Service to help you through this. They can also sort out your GPs for you by speaking to the Practice Manager, and explain the Clinical Commissioning Group policies, if needed.
Paediatric ocular rosacea ~ primum non nocere