Why I Don’t Agree With the New NICE Guidelines For Chronic Pain

All opinions in this post are my own.

On 7th April 2021, the NICE (National Institute for Health and Care Excellence) published this article, which made recommendations for how chronic pain should be treated in the UK.

I think that, at best, NICE have good intentions that other options should be explored for people with chronic pain instead of just throwing a prescription at them, or, at worst, NICE do not want money to be spent on drugs that will never cure an illness, that only help with managing pain to varying degrees.

If you don’t want to read the full article, I have summarised it below:

  • People with chronic pain ‘should be offered a range of treatments’
  • NICE want to make a ‘positive difference’ to people with chronic pain
  • There are two types of chronic pain – secondary (where pain is caused by an underlying condition, such as endometriosis or arthritis) and primary (where the cause of pain is unknown – so for people still awaiting a diagnosis, or for people who have pain as the disease itself, such as a neuralgia or a myalgia)
  • This guideline focuses on chronic primary pain
  • Healthcare professionals should gain an understanding of how the patients life is affected by their pain and a care plan should be developed based on the daily affects of pain
  • The guideline makes recommendations for treatments that have been ‘shown to be effective’ in managing chronic primary pain – acupuncture, exercise, talking therapy and antidepressants (which they say help with the quality of life in a patient with undiagnosed pain)
  • The guideline recommends that medication should not he offered, as they say there is a ‘risk of harm or addiction’ and there is ‘little to no evidence’ that medication can improve quality of life
  • Dr Chrisp states that prescribing antidepressants is the only drug treatment that has an adequate balance between the benefit and risks to someone with chronic primary pain
  • If you have primary chronic pain and are on medication, you should discuss a new plan with your doctor to explore other options, which may include staying on the medication, but could also include reducing/stopping medication and looking into ‘safer, more effective’ options
  • There should be more options to help people manage their pain better

If you would like to read the whole article, you can click here.

I don’t like the new guidelines and I feel like NICE completely miss the point.

Pain has to last over 3 months before it is called ‘chronic’. It takes, on average, around 8 years for an endometriosis diagnosis, 6 years for a lupus diagnosis, and 10 years for Ehlers-Danlos syndrome.

Being without a clear cause for pain or being without a diagnosis, does not mean that you are not in pain. It does not mean that you do not require medication to live with the pain. If you have undiagnosed endometriosis pain for 8 years before a diagnosis, you still have had endometriosis. If you have facial pain for 5 years without the doctors knowing a cause, are still living with facial pain. That is what NICE is missing.

I have trigeminal neuralgia and I was diagnosed incredibly quickly. I had my first attack in July 2015 and received my official diagnosis in September 2015. This is purely down to luck – my dentist recognised my pain immediately and my GP is an incredible advocate for me and fast tracked me down to see a neurologist. I am aware that most people are not this lucky. I know people can search for an answer to TN pain for years and years, losing teeth along the way.

There is no obvious cause for my pain. The neurologist who diagnosed me said that they thought my blood vessels were swollen (from blood tests they did), but my MRI came back showing nothing, so I was diagnosed with atypical trigeminal neuralgia from my symptoms alone. This means that my pain comes under primary chronic pain and I would be denied medication in the first instance.

I can very safely say that exercise will not cure my nerve pain. It wouldn’t help me before diagnosis, it will not help me after diagnosis. When my pain reaches more than I can tolerate, I rely on medication. That is a fact.

I don’t like amitriptyline.. I hate the stuff. When I take it, it makes me fat, exhausted & I feel drunk. It also takes the edge off my pain – a pain so strong that it has been nicknamed ‘the suicide disease‘. So, yes, I completely understand where NICE is coming from when they say that there are risks that come with the prescribed medication for chronic pain.

Whilst my medication has never completely taken my pain away, sometimes a bit of codeine just gets me through the day. For me, the benefits outweigh the risks there, because I’m able to function.

For some people with TN, their pain is very well managed with medication. I know people who experience long periods of time where they are pain free, or virtually pain free, on drugs that NICE would deny people with chronic pain.

The guidelines also collect all chronic pain conditions into two categories, primary and secondary. The conditions in ‘primary’ vary massively – too much for me to even cover in this post. Some will be helped by acupuncture, some will be helped by therapy. However, for some, exercise will aggravate their condition. Acupuncture is not something I am willing to explore with chronic facial pain. There is no chance in hell of therapy helping with a handful of conditions I could rattle off in a minute.

The guidelines are incredibly ableist.

The thing that is really worrying is the thought that someone still waiting for a diagnosis may now not be offered what I would consider to be basic medications such as paracetamol and anti inflammatory drugs, as these are also suggested to be ineffective.

Give people more options, but do not take away the option of medication.

All pain conditions are not the same.

There are a lot of things I could say about the article, but the most important thing is just that I find it very damaging and insulting. I find it offensive that the only medication specifically mentioned is an antidepressant and I am incredibly saddened to see that the article makes it look like you are a lost cause if you have chronic primary pain. You can have antidepressants and you can have therapy. You can talk about your pain, but will be denied drugs that could help improve your quality of life, because they may be addictive.

This is pill shaming at its finest.

I have no idea how it has been assessed that medication will not improve the quality of life for people with all kinds of pain conditions. I don’t know how they plan to give access to alternative therapies to thousands of patients, when the waiting lists are currently months and months.

I really hope that NICE listen to the feedback they are receiving when reviewing their guidelines. I hope they had good intentions, but unfortunately, for me, this has come off feeling horribly wrong.

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Trigeminal Neuralgia

2 Comments Leave a comment

  1. Walk a mile in our shoes then let us know if you can survive without pain medication! Trying to think around my pain everyday, every second is exhausting on it’s own but having nothing to help you get through the pain is unbearable. I don’t understand how doctors can’t see that us Warriors are fighting for our lives day in and day out? Do the doctors think we like having to come to them for help and being treated like we just came for pain medication? We wouldn’t put ourselves through the Humiliation and Ridicule that the doctors dish out. Not all doctors are like this for sure and I am lucky enough to have a great PCP who diagnosed me right away. I wish doctors had empathy ,as well as, sympathy for all their patients.
    I have been suffering greatly from TN2 for the past 5 years which was caused by my dentist missing a cracked tooth sitting on my right jaw bone and V3 nerve for 7 months causing me a massive gum and bone infection. My MRIs confirmed I have bilateral compressions but my neurologist said I probably wouldn’t have been bothered with it if not for the infection.
    My prayers are with you all my fellow Warriors.🙏🙋🏼‍♀️

    Liked by 1 person

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