"Help with Effective Pain Management"

About: Barnet Hospital / Pain Management Hammersmith Hospital London

(as the patient),

Hi, I am a patient and for over 30 years, have had kidney failure, a transplant, both hips replaced, and numerous other conditions. As my kidney is brilliant, now 32 years (yes, 32 years), I am able to deal with anything or so I thought. After over 22 years working, I developed a blood clot in my leg (DVT) and am left with post-thrombotic syndrome which causes me very severe pain and my leg swells up a lot, get hot and pain is unbearable. Saw Pain Consultant, and have no option but to take opioid analgesics, I take fentanyl patches.

These are Controlled Drugs and my GP is old-school - I never have any spares - if one accidentally comes off, I go into withdrawal - very distressing. What do I do? Any ideas would be welcome. All I need is 2 spare patches per month, in case I need them, if I don't, I would not request on repeat prescription. But GP refuses, says is illegal to give spares - I know this is wrong, but he threatens to throw me off the list. I ran out when the weather was very hot, and went to him in withdrawal distress - he gave me methadone instead! ! How illogical is that? What is the difference between giving me two patches and methadone! ! Senseless. He is so adamant and scares me, up to a point where I have had to seek counselling and thoughts of ending it are always there - running out is always on my mind, 24/7. The Pain Consultant cannot help as policy is that opioids are prescribed by GPs only. I go into withdrawal once every 3 months or so - when it was hot, lost 2 patches (sweating from inside made patch come off). Severe withdrawal ensues and had to call 111 - and you know how bad they are - don't carry patches or other CDs to relieve my distress! ! So had to wait ALL WEEKEND.

This is permanent, and I have been on fentanyl patches since 2007, and also take duloxetine for nerve pain. My renal physicians say it is GPs who should be prescribing and hospitals are not allowed to prescribe without good reason - my transplant is at stake, in withdrawal, my blood pressure increases, which damages kidneys - but nobody understands. Shipman is the excuse used by my GP.

If anyone has any ideas of what I can do to have a comfortable life, I would be extremely grateful. I have not been out socially for about 2 years, honestly, my pain is just not controlled. My Pain Consultant said if I wanted to go to the cinema, a meal, etc. , I should take additional pain medication and go, NOT stay at home. BUT my GP will not give me any spare medication for this purpose.

I am reaching my limit, depressed, in a panic, every day - it is now getting to me. So if anyone has any suggestions, please let me know, I really need assistance. Many thanks

Do you have a similar story to tell? Tell your story & make a difference ››