Remember last year I was urging you to contact NICE about the draft chronic pain guidelines?
Here, here and here are the posts
Well they published them now and they are pretty much the same! These are the guidelines the give to all doctors.
No painkillers of any kind for chronic pain! None!
No tens or other electrical treatments.
Only exercise, CBT, ABT, off-label antidepressants and acupuncture if available.
Read the guidelines here
This is totally barbaric!
My chronic pain is so bad that I was bedbound and would scream and cry night and day as I couldn’t move or get comfortable and couldn’t sleep. The pain was beyond 10/10 and I honestly wanted to die.
The fentanyl which is the strongest opioid available was given to me after nothing else worked. I tried everything for over a decade and especially in the last 4 years when the pain got much worse to 10/10. The fentanyl reduces the pain to still a high 7 or 8 but not as bad as me wanting to die, plus I am not bedbound now although still pretty much housebound most of the year as the pain is bad and affects my mobility.
I went through years of them just sending me to physiotherapy which did nothing and the pain got worse rather than better. It was pointless and now they are suggesting exercise, ABT and CBT for people? I can’t think the pain away! It is unbearable pain, not mild pain. It is unbearable and controls every second of my life.
I cant get cannabis on the NHS which helps as NICE didn’t approve that either and are now taking away opioids too.
No one knows how bad chronic pain is unless you have had it!
NICE should have spoken to patients! In fact lots of you emailed in the forms saying please don’t take away opioids and they did it anyway.
If you are already on them, your doctor can still suggest you come off them! Many were already doing this and this will push more to do it.
My doctor who is the only one out of LOTS that would give me something for the pain. He told me he would keep giving me them but I have to keep up the three week calls forever…
No one else would give me any thing for pain. They just don’t understand how bad pain can be!
NICE are taking away a lifeline for many. Opioids are needed for severe pain, especially when they don’t let us have cannabis either!
Opioid abuse is NOT from chronic pain patients! It is from addicts who abuse all opioids, including heroin which is an opioid. That is why all opioids got a bad name which is ridiculous as for many chronic pain patients, they are literally a life saver.
Email [email protected] and make a complaint.
In the subject put something like “Complaint about chronic pain guidelines”.
It is NICE guideline NG193, if you want to add that you can.
I am honest and saying it probably won’t do anything but it is worth trying and telling them how unhappy you are.
(warning in advance of suicide mentioned below)
NICE, you are going to kill patients with this advice. I know all too well how bad chronic pain can be and I know that feeling of not wanting to live as it is so bad all the time. They just don’t understand as they don’t ask us.
In the USA many people sadly took their lives due to having opioids taken away as the pain was too bad.
They were not addicts! They had severe chronic pain!
This will kill people. Some people with unbearable pain where their life is filled by unbearable pain who now won’t have access to opioids, will take their lives. This is the sad truth as it happened in the US and it will happen here.
NICE only care about two things and that is money and appearance. i.e looking like they are doing something about an issue when in fact they aren’t helping at all.
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