So I have a chronic illness caused by a genetic abnormality, therefore I have been in chronic pain since I was born, have malabsorption which has lead to other ilnnesses some which are serious.
I have been on very strong painkillers and frequent hospital admissions all my life and have allowed experimental drugs, procedures and operations to be carried out on me to try to find a cure or at least to make life easier. My illness is Very very rare.
Over the last three years my gp has prescribed my medications without question. They where administered by the gp practice nurses or district nurses. Then this year they stopped and I was told I had to go to hospital a and e for my medications. I was referred to a specialist and both they and my consultant want me to have access to my drugs as before from home , however my gps practice will no longer facilitate this and the consultant and specialist cannot prescribe or authorise the procedures. It has to be done in primary care. So where do I go and what do I do. I cannot interview a new gp prior to registering as you cannot do that and I may end up in the same boat if the gp does not want to do it . Since this has happened I have no quality of life. My relationships and marriage is suffering and I cannot see a way out.. congratulations if you have read this far, any suggestions gratefully received.