"Spinal lipamatosis"

I have been diagnosed with this rare complaint, above. I am now being tested for Cushing Syndrome.

This has been going on for nearly a yearly a year.

My main complaint is that the receptionists aren’t given enough training or information.

For instance, I had to give a 24 hour urinary sample. The only place I could get the

Northwick Park. I had phoned all the chemists and they don’t stock it. My husband had to take a day off work to take me to the hospital to collect it. I was told I had to collect it myself because I would be given instructions on how to do this collection. I arrived at the hospital, I can hardly walk, the person in pathology gave me the receptacle. I asked if there were any special instructions. He said no, just put your urine in it, write your name on the bottle. When I arrived back home at lunchtime I phoned the surgery and asked if my husband could drop it in there for collection instead of driving all the way to the hospital. She said it wasn’t a problem, just tell the duty receptionist and they have a special box to put it in. My husband came home early from work and he took me to the surgery late afternoon. The receptionist said she wouldn’t take it, I was too late and basically leave it there and they would dispose of it.

This means, in her words, I have to ‘start all over again’!

Great fun!

I have left a note for my doctor to ask if they can order another receptacle and can it be picked up from the surgery. It’s obvious from the pathologist there are no specific instructions. My husband, this year, hasn’t earned enough to pay tax because he is looking after me. And thatS after serving 12 years in the Army in Bosnia and NATO.

I have always been fit and well and am a Rescue Diver, I ride motorbike, teach combat shooting. I haven’t done anything to get this medical problem. All I ask for is a little more help. I asked on Friday if the doctor could phone me so I could ask for a bottle to be left at the surgery. I was told if would be 72 working hours for a call. I’m not asking for much, and feel I’m not getting much. The doctors have been very kind although three have said they had never heard of this condition. The receptionist should have told me to deliver the sample by 2:30, but she didn’t.