Here at To Better Days we believe in being generous, empathetic and always kind. We believe each chronic pain condition is different and that individuals should have a voice and say in their treatments. More than anything, we believe that although many times invisible, chronic pain is real, affects people’s lives deeply, and in order to be treated and managed, the support of all of those who can help – be it the medical community, alternative treatment therapists or businesses, the wider community as well as family and friends – is essential.
Which is why we had mixed feelings reading the new NICE guidelines for Chronic Pain that came out early April. The National Institute for Health and Care Excellence, or NICE as it is commonly known, published new guidelines for chronic pain assessment and management earlier this month. Though merely guidance, NICE recommendations carry weight because they determine what the NHS will and will not pay for. They are ruled by the Department of Health and therefore may have a responsibility to protect their budget, so they can be by their nature sceptical, and their recommendations conservative.
Much as they claim they are strictly “following the science”, the weighing up of benefit against cost will always have a political dimension. Their conclusion last year that COVID was not linked to vitamin D deficiency was one such example, when they refused to consider 95% of the research papers on the subject. It did not escape notice that, had they conceded such a link, the NHS might be on the hook for providing vitamin D supplements to the entire population.
Chronic pain is another political hot potato for NICE. As they say in their introductory “Context”:
“In the UK, the prevalence of chronic pain is uncertain, but appears common, affecting perhaps one-third to one-half of the population.”
Any recommended treatment risks twenty to thirty million patients clamouring for it, and the NHS having to pay. This might be informing their guidelines on painkillers, about which they have nothing good to say:
“1.2.10 Do not initiate any of the following medicines to manage chronic primary pain in people aged 16 years and over: antiepileptic drugs… antipsychotic drugs, benzodiazepines, corticosteroid trigger point injections, non-steroidal anti-inflammatory drugs, opioids, ketamine and paracetamol.
“1.2.11 If a person with chronic primary pain is already taking any of the medicines in recommendation 1.2.10, review the prescribing as part of shared decision making: explain the lack of evidence for these medicines for chronic primary pain and agree a shared plan for continuing safely if they report benefit at a safe dose and few harms or explain the risks of continuing if they report little benefit or significant harm, and encourage and support them to reduce and stop the medicine if possible.”
“A small amount of evidence for short-term use of topical local anaesthetics suggested that there is either no benefit or that their use could result in worse outcomes for pain than placebo. No evidence was identified for intravenous use. The committee, therefore, agreed to recommend against the use of topical or intravenous local anaesthetics for chronic primary pain.
“No evidence was identified for paracetamol, ketamine, antipsychotics, corticosteroids or anaesthetic/corticosteroid combinations (for the latter 2 evidence was only considered for trigger point injections). From their own experience, and from the summaries of product characteristics, the committee agreed that these medicines have possible harms.
“Evidence suggested that short-term use of NSAIDs made no difference to people’s quality of life, pain or psychological distress. A small amount of evidence suggested that NSAIDs reduced physical function, compared with placebo. In view of the risks of harm with NSAIDs (gastrointestinal bleeding) and the lack of evidence of short-term or long-term effectiveness, the committee decided to recommend against starting NSAIDs for chronic primary pain.”
The evidence actually supports these views. For example, the evidence in favour of NSAIDs like Ibuprofen and Diclofenac (Voltarol) is extremely poor with several Cochrane Reports finding marginal efficacy at best.
The psychotherapy and pain management industries also receive scathing reviews.
“For mixed types of chronic pain, benefit was observed in quality of life from all 4 studies. However, limited benefits were observed for function, psychological distress and other outcomes. Where benefits were observed, they were only small.”
Cognitive behavioural therapy (CBT), acceptance and commitment therapy (ACT) were given encouragement to investigate further; as were anti-depressants (but not painkillers of any sort) and acupuncture. Nothing else passed their tests and they considered a wide variety of possibilities: CBD, other cannabis-based medicines, laser therapy, TMS, TENS, PENS and other forms of “electrical physical modalities”.
But their main recommendation, which hit the headlines, was simply to take more exercise.
For some, the response was blind fury, expressed most forcefully by James Moore of The Independent:
“Dear NICE, some thoughts on your nonsensical guidance for chronic pain sufferers”.
For him, the whole document is a council of despair for chronic pain sufferers and a deliberate refusal to console. Lay off the pills, drop your shrink, stop moaning, pull your socks up and join a group exercise course.
There certainly are troublesome aspects to NICE’s tone. Note this in their “Context”:
“ The experience of pain is always influenced by social factors (including deprivation, isolation, lack of access to services), emotional factors (including anxiety, distress, previous trauma), expectations and beliefs, mental health (including depression and post-traumatic stress disorder) and biological factors. When assessing chronic primary pain and chronic secondary pain, these potential contributors to the presentation should be considered.”
It makes more sense that causation flows in the opposite direction and those supposed causes are consequences of chronic pain. People’s chronic pain has not arisen from the environment, social or material, even though these undoubtedly contribute to the worsening of the condition and people’s ability to access appropriate support. It comes from your body. It is a physical reality, sited in the nociceptors, which are not abstractions but physical objects identified a century ago.
NICE’s bias towards a psychological interpretation of chronic pain is apparent throughout. As James Moore says,
“This points to a theme running through all this: the dismissive and patronising suggestion that people’s pain is “all in the mind” dressed up in authoritative looking language that speaks of “pain management plans” and attempts to sound compassionate where I detect high handed callousness.”
He is not wrong.
Most notable are their recommendations for further research: into CBT, anti-depressants and into acupuncture, which we welcome. They omit entirely further research into the nature and causes of pain or new treatments for the peripheral nervous system, which we think is a real concern.
We share their view that painkillers can have harmful effects long-term and in the short-term, the benefits may be little more than also short-lived. It may just be a support aid, something that is helping someone to just get through the day, but that does not mean it doesn’t have value for some and it’s right to kick it away.
In our community at Together for Better Days, we have seen how Chronic pain, be it primary or secondary, affects people’s lives deeply and how there is no one size fits all solution. Many people are just looking to get through the day the best they can using what (limited) resources they have available, whilst at the same time, showing such examples of bravery, humour and insight, which are completely humbling and inspiring to us as a business and individuals. We hope that, above and beyond the essential research into the science that founds its recommendations, NICE has also been privileged to listen to people’s stories to understand the true personal impact of the recommendations it puts forward.