FOR those who suffer from untreated chronic pain it can make every minute and every hour a herculean task to get through. It can trap them inside, isolated and often in bed.

So, when effective pain relief is found, which enables the person to break free from the bedroom-cell, it’s not surprising the thought of it being removed causes anguish.

That explains why there is so much consternation about the recent intervention by the National Institute for Health and Care Excellence (Nice) regarding how the NHS should treat chronic pain, in particular pain that has an unclear cause.

The measures are based on the ICD-II, which defines pain as “chronic” when the individual has experienced it for three months and longer.

For the first time, those with chronic pain are divided into two groups, chronic primary pain and chronic secondary pain, with very different treatment options applicable for each group.

Where the cause is unclear — the pain is to be called “chronic primary pain.” Chronic pain caused by an underlying health condition is to be called “chronic secondary pain.”

The guidance says:

“Chronic primary pain is pain in one or more anatomic regions that persists or recurs for longer than three months and is associated with significant emotional distress or significant functional disability...

“This is a new phenomenological definition, created because the aetiology is unknown for many forms of chronic pain.

“Common conditions such as back pain that is neither identified as musculoskeletal or neuropathic pain, chronic widespread pain, Fibromyalgia and irritable bowel syndrome will be found in this section and biological findings contributing to the pain problem may or may not be present.”

A whole group of conditions are bundled together in this group from back pain to Fibromyalgia and by doing so, Nice has undermined the real-life experiences of those with chronic pain, with a distinction that feels judgemental and unnecessary.

By dividing these two groups and giving them different treatments, there is also strong risk that somebody with chronic primary pain can have the same underlying cause to their pain as someone with chronic secondary pain – it just hasn’t been discovered and diagnosed yet. That’s because for certain conditions it can take months and even years before a firm diagnosis can be made.

Some treatments being touted for “chronic primary pain” are plainly focused on mental health, such the giving of antidepressants and Acceptance and Commitment Therapy (ACT) — an intervention using tools such as mindfulness and “acceptance” therapies in order increase “psychological flexibility.”

The full list is: Exercise, being physically active, psychological therapy such as CBT and ACT, acupuncture, Tens machines and other electrical pain equipment and an antidepressant, after a full discussion of the benefits and harms.

Doctors are told “not initiate any of the following medicines to manage chronic primary pain in people aged 16 years and over” — these include: antiepileptic drugs — including drugs like gabapentin, antipsychotic drugs, benzodiazepines, corticosteroid trigger point injections, Ketamine, local anaesthetics and of course, opiates.

For those already on these types of medications, the guidance Nice is giving to clinicians is clear. Will this lead to many of those currently on these types of painkillers being “encouraged” not to take them, even when they are working? What about those patients with a mix of primary and secondary pain?

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.

This is against the backdrop of growing concern in Britain about the increase in opiate prescriptions and deaths connected to their use. Yet, thousands of patients feel they have got their lives back thanks to such medications. That includes patients like Jo.

Jo has Complex Regional Pain Syndrome (CRPS) following extensive surgery on both his knees, that finally resulted in both knees being replaced.

When his left knee was in recovery, his right knee that had been much more problematic came under more pressure, splitting the tibia bone beneath the replacement knee. More metalwork was inserted but in terms of chronic pain this was the point where it became unbearable.

“The pain was horrible — a searing burning pain that gnaws below my knee at the site of my last operation.”

His surgeon assumed the pain would ease off after the surgery to support the tibia but that didn’t happen.

“It ruined my walking, my sleep, my thinking and my concentration. I just couldn’t function with this level of pain. Fortunately, my GP referred me to the Pain Clinic and they diagnosed me with CRPS. I was then referred to the Royal National Hospital for Rheumatic Disease in Bath.”

During his stay Jo had his diagnosis confirmed. There were also more investigations into the problems with his knees, particularly his right knee, along with occupational therapy, physiotherapy and time spent with a specialist nurse and a psychologist.

“I had a fairly basic look at the CBT models of coping, but the medical staff at the centre were adamant that due to the severity of my problems, opiates were entirely appropriate.”

Jo has read over the Nice guidelines and is concerned. CRPS is placed in the “primary pain” category. With a GP who he describes as “very procedural” Jo is concerned that his current medication regime that includes opiates will be changed.

For anyone who has experienced chronic pain without effective medication it is impossible to sit and “be present” with the pain, let alone exercise, which makes those who suffer from such pain curious about the research.

The campaigning group Action on Pain addressed this in a statement they released regarding these new guidelines. They said the research was: “Drawn up from a very low evidence baseline, these guidelines have been castigated from many sources including Action on Pain as they are far removed from the needs of people affected by chronic pain and those who strive to treat them.”

Jo, who uses Morphine, Pregabalin Dihydrocodeine amongst other medications as well as Lidocaine anaesthetic patches for his knees, said: “Having effective painkillers is the difference between having to stay in bed or being able to move enough to get up.

“It is the difference between getting a few hours quality sleep as opposed to a fitful night with broken sleep. And functional things like being able to get a bath — but also the ability to concentrate on a task that would ordinarily be interrupted by pain.”

The argument for these new guidelines is so those with “chronic primary pain” will have more choice to assist their pain, with a focus particularly on psychological remedies.

If the availability of such therapies is there when required this might be a positive for some people, but with waiting lists for therapies such as CBT being, in some areas, months and even years, this is doubtful.

With these guidelines alone, there is the potential for many thousands of patients to be denied the help they previously found effective, drawing them back into a life dominated by pain.

Ruth F Hunt is a freelance journalist and author.

A visual summary of these guidelines can be found on the Nice website www.mstar.link/ChronicPain.