Yesterday NICE released new draft guidance on the treatment of primary chronic pain for consultation. The changes proposed constitute a big shift away from medication – including painkillers – and towards other forms of pain alleviation. Read NICE’s press release here, and the full documentation here.

In this post we will outline the NICE draft guidance, our concerns, and how to have your say. It’s a bit of a long one, but grab a cuppa, it’s worth a read! To help here are some quick links to help you navigate the document:

What are NICE proposing be stopped?
What are NICE proposing be prescribed instead?
Important clarifications
Some concerns

First off, who is NICE?

The National Institute of Health and Care Excellence (NICE) is an independent organisation created by the government in 1999 with an aim to decide which medicines and treatments should be available free on the NHS in England. The main responsibilities of NICE are to

• assess new drugs and treatments as they become available
• provide evidence based guidelines on the treatment of particular conditions
• provide guidelines on how public health and social care services can support people
• provide information services for those managing and providing health and social care

NICE considers whether a treatment benefits the patients, whether the treatment is cost effective, and if it helps the NHS meet its targets.

What are NICE proposing should be stopped?

• Opioids (e.g. codeine)
• Non-steroidal anti-inflammatory drugs (e.g. ibuprofen and naproxen)
• Benzodiazepines
• Anti-epileptic drugs including gabapentinoids (e.g. gabapentin and pregabalin)
• Local anaesthetics
• local anaesthetic/corticosteroid combinations
• Paracetamol
• Ketamine
• Corticosteroids
• Antipsychotics
• Electrical physical modalities (e.g. TENS and ultrasound therapies)
• Biofeedback

What are NICE recommending be prescribed instead?

• Up to five hours of acupuncture treatment
• Anti-depressants
• Talking therapies (specifically CBT and ACT)
• Limited-term group exercise sessions and a recommendation to continue exercise long-term.

Some important clarifications.

This draft guidance doesn’t cover all types of chronic pain. Where guidance already exists for specific conditions (e.g. headaches, low back pain and sciatica, rheumatoid arthritis, osteoarthritis, spondyloarthritis, endometriosis and irritable bowel syndrome), those guidelines should continue to be followed. This guidance is specifically for “chronic primary pain”, which is defined in the guidance as:

Chronic pain: Pain that persists or recurs for more than 3 months.

Chronic primary pain: Chronic primary pain is chronic pain in 1 or more anatomical regions that is characterised by significant emotional distress (anxiety, anger/frustration or depressed mood) or functional disability (interference in daily life activities and reduced participation in social roles). Chronic primary pain is multifactorial: biological, psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate unless another diagnosis would better account for the presenting symptoms.

The ICD-11 definition of chronic primary pain includes chronic widespread pain, complex regional pain syndrome, chronic primary headache or orofacial pain, chronic primary visceral pain and chronic primary musculoskeletal pain.

The guidance also states that rather than necessarily withdrawing medication,

If a person with chronic primary pain is already taking any of the medicines in recommendation [listed above], explain the risks of continuing.

So, if you are already on these medications for primary chronic pain, or you have a diagnosis of a condition that causes chronic pain, these guidelines won’t affect you. However, you should still be concerned.

Before we get into our concerns, it is important for us to say that we welcome the use of counselling, acupuncture and in particular exercise, as part of the management of chronic pain. All have the potential to be a valuable part of the treatment toolbox shared by doctors and patients. We also welcome continued review of the way chronic illnesses are managed in order that they reflect the most up-to-date science and treatments, and of course we welcome new guidance where none has previously existed. We also applaud the recognition that the guidelines make around things like how patients experience communicating with doctors, and the potential for normal or negative results to make patients feel dismissed. Finally, we hope that the recommendations for further research into things like relaxation therapy, social interventions, laser therapy, transcranial magnetic stimulation and cannabis-related medicinal products.

Concerns.

Despite the positive aspects of the draft guidance, we have some serious concerns and questions. You are welcome to use (or ignore!) any of the points below when making your submission to a stakeholder organisation or to NICE directly (see below).

Fostering collaborative partnerships – Right at the start of the draft guidance, NICE recommends that doctors “Foster a collaborative supportive relationship” by

“knowing the patient as an individual, enabling patients to actively participate in their care, including communication, information, shared decision making, and [recognising] that chronic pain can cause distress.”

To do this it is recommended that doctors:

• Ask the person to describe how pain affects their life, and how their life may affect their pain.
• Ask the person about their understanding and acceptance of their condition, and that of their family, carers and significant others.
• [Acknowledge] the fact that the pain may not improve or may get worse.
• Develop a care plan with the person with chronic pain. Explore their priorities, strengths, preferences, interests and abilities to inform the plan.
• Discuss the possible benefits, risks and uncertainties of all management options for the person’s condition when first developing the care plan and at all stages of care.
• Provide advice and information relevant to the person’s individual preferences, at all stages of care, to help them make decisions about managing their condition.

To those who have lived with chronic illnesses for any length of time, these recommendations feel almost laughable. In order to implement all of the above, to really foster collaborative partnerships, two things need to happen. First, appointment times need to be extended beyond 5-10 minutes, or multiple back-to-back appointments should be made available to chronically ill patients to allow for these discussions to take place. Current appointment times just do not allow for the above list to take place. Instead, appointments are rushed and patients often feel they have missed things they wanted to say or query in the rush of the appointment – especially where cognitive impairment from brain fog, fatigue etc. play a part. Second, more interdisciplinary collaboration needs to happen. It is extremely difficult to make collaborative partnerships that enable effective and informed care plans to be made when it is so difficult for doctors to talk to each other. Currently the GP tends to be the hub of contact from what can be a variety of specialist consultants who typically don’t communicate directly with each other, and this lack of collaborative partnerships between doctors greatly limits the ability for doctors to create collaborative partnerships with patients.

Expanding the toolbox – While we welcome the recommendation to make exercise, acupuncture and counselling part of the chronic pain management toolbox, we feel that it is better to ‘add to the toolbox, not just change the tools’. The guidance talks of “shared decision making” when it comes to treatment, but by taking painkillers, anti-inflammatories and steroids off the table, NICE are taking the ability to take some decisions away from patients. If treatment plans are to be tailored to each individual as the guidance says it should, we need to have every option open to patients who can then work with their doctors to find the right short, medium and long term management plans for them.

Linked to this are the limited approaches suggested when it comes to psychological and emotional support. The guidance is limited to CBT and ACT, both “talking therapies” designed around accepting circumstances and better dealing with negative thoughts and behaviours. However, alternative therapies such as EMDR are already being used by the NHS in conditions such as PTSD and post-natal psychosis, and it is starting to be used successfully to assist chronic pain patients for whom talking therapies are not suited. Here again we would like to see NICE giving guidance that includes a wide range of approaches so that patients and doctors can find an approach that suits each individual.

Treatment pre-diagnosis – the guidelines don’t lay out how patients should be treated pre-diagnosis. Should chronic pain be treated as chronic primary pain until otherwise diagnosed? If it is suspected that they have a condition like endometriosis or IBS, should they be treated as having chronic primary pain until the diagnosis is confirmed, or should they be treated as they would be once diagnosed? These questions could have a significant impact on the thousands of people who are on (often lengthy) waiting lists to see consultants in order to get a diagnosis, who risk not get the treatment most appropriate to their situation.

This is even more so the case where a patient is suffering from a less well-known conditions where diagnosis can take years. For example, research has shown that the average time from first symptoms to diagnosis for EDS patients is 19 years. EDS is known to cause widespread chronic pain, and patients typically see a number of consultants before diagnosis is reached. Will these patients be limited in their treatment options over this extended period of time or will doctors be able (or even encouraged) to change the way they treat patients over time to reflect their healthcare journey towards diagnosis?

Waiting times – Just like the waiting times for diagnosis, current waiting times for the treatments being recommended like CBT are often long, and in many areas ACT, acupuncture and group exercise is not yet offered by NHS Trusts. The guidance does not outline how pain should be managed while a patient waits for access to the recommended treatments, potentially causing weeks or even months or years of unmanaged pain.

Short-term solutions for a long-term problem – by definition, chronic pain of any sort is not short-term. Yet it seems that at least two of the four recommended treatment paths are only short-term. The guidelines specifically state that only five hours of acupuncture should be available. When talking about exercise, the guidelines do not state how long the free NHS group exercise programmes would last, but they make clear that despite advising patients to continue to exercise long-term to help continue to manage pain, it will not be a funded provision. Our 2019 research showed that 37% of respondents said cost was a barrier to accessing movement and exercise, and it is therefore imperative that further planning is put in place to support patients to continue to exercise.