I have hereditary Pancreatitis, caused by an abnormal gene. I was a sickly baby , hospitalised at 4 and diagnosed at 7. Even though my mum knew what it was.
So thanks to the new government and nice or not so nice guidelines . I had my morphine. Injections in the community stopped by my gp practice. I was told to go to a and e. I was going two to three times a week and some of the time I was being treated as a drug seeking waste of time. Had to wait anywhere between 45 minutes and nine hours for my injections.for around 6 months I have either been treated really well not so well and absolutely appallingly. I have been told I can’t use a and e not to go and to speak to my gp. My gp has at least three letters on my file, from consultants in pain and pancreatitis to reinstate my morphine. I have been from no we can’t prescribe or administer it to we will administer it if you can get someone else to prescribe. I subsequently had a meeting with my gp and a a and e consultant who told me he would give me a protocol, and put something on my records to prevent me waiting in a and e so long , this hasn’t happened and refer me to a pain consultant. I could go to a and e twice a week. The pain consultant told me there was nothing she could do about this and referred me to a clinic in Liverpool without discussion. I cannot go. 6 months later I was sent a letter saying that I used a and e too much and was being referred to a psychiatrist , if I didn’t go they would set up a schedule to stop me going to a and e too much and I would have to abide by it. So I went to fight my case . The first time I saw her she said that she would help me sort my problems with a and e And my gp. The second time I saw her on Friday she told my husband not to come again and he couldn’t have any input. This is the man who puts up with everything and since his retirement has done anything to help me get to the hospital doctors etc.
I have been told that I have had the operations that can cure pancreatitis and that as my amylase does not increase it is all in my head and that she wants start some therapy with me . There is also a social worker being sent to my home to take me out for days and to improve my attitude and mood and to ensure I’m living life to the full.
I am currently lying in bed in agony dreading the unavoidable a and e. But guess what it’s ok cos it’s all in my head.