Today, 7th April 2021, the National Institute for Health and Care Excellence, otherwise known as NICE, published its guideline on diagnosis and management of chronic pain (NG193) – see here. News programmes emphasised its advice against using analgesic drugs. I frequently saw people with chronic pain and joined a local group interested in its management, so I looked at this with interest. As with other NICE material, many parts are good. BUT I could not find any mention of rehabilitation or the biopsychosocial model of illness and a search showed that neither word was present anywhere. How can this happen? I review the guidance and conclude … as you will see.
As I have discussed before (here) pain is an axis around which the biomedical model of illness and the holistic biopsychosocial model of illness rotate, at opposite ends of the central spoke! There is no doubt that pain is experienced by everyone, and people know when they are experiencing it. If someone says they have pain, we believe it unless it is said by an actor, when acting. Occasionally people lie and state they have pain when they do not, but this cannot be proven either way.
Yet, despite believing the self-report, most people distinguish, in their mind, if not explicitly, between ‘real pain’ which is explained by demonstrable tissue damage, and other pain, often referred to as ‘in the mind’ (where else is pain?) or ‘psychological pain’ (with an implication that somehow this is less ‘painful’), or, sometimes in unguarded moments, ‘imaginary pain’. This categorisation of pain as ‘real’ or ‘other’ arises directly from the biomedical model of illness, because pain that does not arise from a biological cause, tissue damage, cannot be explained by the model.
The NICE guideline describes chronic (more than 3 months) primary pain thus: “Chronic primary pain has no clear underlying condition or the pain (or its impact) appears to be out of proportion to any observable injury or disease.” They go on to say: “ICD-11 gives examples of chronic primary pain, including fibromyalgia (chronic widespread pain), complex regional pain syndrome, chronic primary headache and orofacial pain, chronic primary visceral pain and chronic primary musculoskeletal pain.” NICE is obviously aware that pain can arise without tissue damage.
They are obviously also aware of the need for a holistic approach looking at many other factors; they say: “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.“
In this context I anticipated a guideline that would acknowledge aspects of functional illness, albeit not directly or by name (I do not expect over much from NICE). What did I find?
The good, …
There is much that is good.
The guideline acknowledges that all pain needs consideration, and that a person may have both pain due to tissue damage and pain that is unexplained, not caused by tissue damage.
The very first specific recommendation is for a person-centred assessment which, as I have explained (here) and as is supported by others (here), is properly based on the biopsychosocial model of illness. There are other sensible, practical recommendations on approaching diagnosis and giving information.
The section on developing a care and support plan starts with three bullet points that are rehabilitation, saying: “Explore in the discussions:
- their priorities, abilities and goals
- what they are already doing that is helpful
- their preferred approach to treatment and balance of treatments for multiple conditions.” [It is unclear exactly what this is referring to.]
For chronic primary pain it recommends:
- exercise programmes
- psychological therapy
- acupuncture (I am not sure that this is based on evidence)
- not using
- transcutaneous electrical stimulation, ultrasound, or interferential therapy
- anti-depressant medication, but not using
- anti-epileptic drugs, anti-psychotic drugs, benzodiazepines, stroid injections in trigger points, ketamine, local anaesthetics, non-steroidal anti-inflammatory drugs, opiods, or paracetamol
The other really good aspect is the wealth of evidence they have reviewed and made available. (here)
.. the bad, …
There are a few bad aspects to this guidance. These do not concern any specific recommendations made; they concern recommendations not made, ideas not mentioned, and evidence not used.
Many patients with chronic pain (as defined by NICE) are already seen in expert rehabilitation services, and many are managed successfully. Many (but possibly not all) chronic pain services provide excellent rehabilitation, and almost all have a good understanding of the biopsychosocial model of illness and indeed often explicitly mention it.
Further, as I have mentioned above, the recommendations the guideline makes are:
- all based on a biopsychosocial model, and are
- all characteristic of rehabilitation.
This is a disservice to patients who:
- may not realise that they are receiving a good service from a named, expert rehabilitation service and ask to leave, disrupting a successful management programme;
- may not accept a referral to a rehabilitation programme, even if it is the best option for them
- do not start to learn about a holistic approach based on the biopsychosocial model of illness.
It is also a slight on existing services who are providing patients with good services but are not named as being competent services. Moreover, chronic pain services who include the term rehabilitation in their title and/or in their literature may be considered ‘not quite right’ by the patient.
It continues the illusion that the biomedical approach is the only approach, because the NICE guideline does not (dare) name the biopsychosocial model. Consequently a whole group of people who read this guidance are not introduced to the model.
Last, it seems probable that they have not taken into account a swathe of evidence that would support their recommendations. I am concerned with how much of the evidence they identified was not used and it is not always clear on what grounds. I fear that the ‘perfect is the enemy of the good‘. They exclude studies because of a minor variation from their rigid protocol, which was the approach used for the draft Chronic Fatigue Syndrome guidance, which is still being developed. (see here.)
… and the ugly.
I will start this section by stating that I am not suggesting that any person within NICE is ugly, actually or metaphorically. It is more a matter of, to coin a phrase, ‘institutional ugliness’, which I will expand upon here.
Th ugliness refers to an unwillingness, or inability, to acknowledge than much of healthcare is not well-served by an adherence to an single disease-centred, specific treatment-oriented approach to identifying and interpreting evidence. [Ugly may not be the best word, but the film title is irresistible!]
The biopsychosocial model of illness has been known for over 40 years, has been used widely, for example, in many areas such as low pack pain, and as the intellectual basis of the World Health Organisation’s International Classification of Functioning. Nonetheless, the word does not appear once in guidelines on low back pain (CG88), Long-Covid (NG 188), Chronic pain (NG193), multiple sclerosis (CG186), or Chronic Fatigue syndrome (CG53).
This cannot be due to unawareness by the organisation, NICE in the guise of their researchers or panel members for the various guidelines. In reading the evidence for these guidelines, and listening to experts talking, it is not credible that the biopsychosocial model was never mentioned. Yet the word does not appear once (according to my search of the .pdf documents).
My speculation is that an acknowledgement of the validity of the biopsychosocial model of illness raises so many questions about their methodology that it is easier to bury NICE’s collective head in the sand and pretend it is not relevant. The increasing recognition of Functional Neurological Disorders and other functional disorders, and the overwhelming evidence of the importance and relevance of social and psychological factors in all illness, including all biomedically-caused illness, will eventually require a change.
I think the failure to acknowledge the role of expert rehabilitation has a more complex explanation, and I can only suggest some factors.
One is that rehabilitation is explicitly based on the biopsychosocial model of illness. Giving full acknowledgement of what expert rehabilitation is and does is therefore a great challenge.
Coupled with that, rehabilitation is a long-term process with many complex interventions, and this is not easily managed in a system that focuses of single, usually short and time-limited, easily defined interventions. It is all too messy for people who are used to close control over everything.
Thirdly, NICE’s conception of rehabilitation is that it is only a treatment with a dose, and they cannot understand that it is a process. To draw an analogy, NICE are looking at whether dexamethasone helps people with Covid-19 without considering that it is given in the context of a whole expert team, or NICE asking whether a hip artroplasty helps, without considering the whole team, other services etc.
This inability of NICE to understand that illness is much more than disease, and that illness management is much more than a single defined, time-limited intervention, leads them to apply a methodology to the evaluation of evidence and construction of guidance that is, simply, wrong. It is not the appropriate approach to the problem posed by many illnesses. It is especially inappropriate for illnesses that can be described as functional or, in their own words, any illness that “has no clear underlying condition or the [symptoms] (or its impact) appears to be out of proportion to any observable injury or disease.”
This NICE guideline on the diagnosis and management of chronic pain for which there is no disease explanation has a series of sensible recommendations at the individual level. Most of them are based on a biopsychosocial model of illness, though this is not acknowledged. Most of them are typical approaches used in expert rehabilitation services, though this is not acknowledged. The evidence identified is extensive, but the methods used to evaluate it and interpret evidence are inappropriate. This guideline follows a long line of other guidelines on similar conditions in ignoring the biopsychosocial model of illness and, more importantly, its implications for the identification and use of evidence. It also shows a failure to appreciate what rehabilitation is, another long-standing characteristic of the NICE organisation and approach. Guidelines will become increasingly inappropriate at a general level until NICE acknowledge that their models and methods are inappropriate for many conditions.