After more thought about what I heard on the above video I'm wondering whether I have been a little harsh on HCPs. One can only work with the information one is given. The true fault lies then with that very data that leads clinical practice IRL. I am feeling a little like a guinea pig at the moment.
It should be made very clear to GPs especially that reporting of side effects is extremely important but I know that this is coming at the problem from the wrong end. All data must be easily accessible and conflict of interest should be stated as mandatory. Big Food, Big Pharma I can understand but Big Academia? That is something I am struggling to reconcile.
We are all living guinea pigs... we are all teally the generation to have a wide range of Big Pharma and big meds and ops available....
The strange thing to me is that there is no real large database that consuktants feed back to, or GPs. None of my GOs have fed back my intolerances of a lot of drugs to MHRA/Yellow card scheme. When I had cannula problems with a pump and reported them, alot of people said I was wrong here.. but the cannulas did get withdrawn worldwide, so others patients must have talen time to complain somewhere to FDA in USA..
It worries me that patients and doctors can have varying aspects to thinking about pain. I have been on 6 session pain management ACT therapy course and found it brilliant. Helped me enormously.
However, if a doctor had chronic toothache he would do his/her damndest to get rid of it.. even if it meant extracting the tooth. They would not accept being told "alter your thinking/activity and it will go!!"
I do believe that some pain is beyond meds, and not just toothache. My friend has chronic dystonia, and catherised and with po bag too. Totally wheelchair bound. Carers and a nurse at 2-4am each morning.. that is chronic, chronic pain from dystonia and opsrations that went badly wrong... however through good thinking and good syringe driver meds and more she is a beautiful, beautiful, lovely, kind laughing, caring lady.... she has a balance of both...mindfulness, thinking of nature, thinking of others AND relatively good pain management control.
I know I found out for myself that other ladies had lidocaine patches helping them with mastectomy pain relief. I was not offered it. It wasnt until I asked my consuktant when he said "you dont tolerate any pain meds, so I cant help anymore" that I asked about lidocaine patches. He said "I'mglad you mentioned as I could not tell you about these as our CCG will not pay for them"... so I could not even be told about something that would help unless I had found out for myself.. even my GP could not help when I had asked them previously... yes, I have to pay £108 for 28 days of 12 hourly pain relief -but I could not even be told about it!! My GP now prescibes on a private prescription for me to purchase.
I have no trust in HCPs, totally knocked out of me when 2 hospitals let me go hypo pre two mastectomy operations.
Only getting a Professor for my breast care has given me some trust back.
We are guinea pigs...