Chronic Primary Pain: A Care Staff Guide to NICE NG193

Persistent pain is one of the most common reasons people need support, and one of the most misunderstood. Some people have pain with a clear cause, such as arthritis or an old injury. Others live with pain that scans and tests cannot explain. For this second group, NICE guideline NG193 changed what good care looks like, and it matters for anyone supporting people day to day.

What is chronic primary pain?

NICE describes chronic primary pain as chronic pain with no clear underlying cause, or pain and distress that seem out of proportion to any visible injury or disease. Guideline NG193 covers people aged 16 and over, and it also sets out how all chronic pain should be assessed and how care plans should be built around individual needs and preferences. For care staff, the key message is that the pain is real, whether or not an obvious cause has been found. Doubting or dismissing it harms trust and makes recovery harder.

What does NICE recommend?

An analysis of the guideline in the British Journal of General Practice highlights the main recommendations. They include supervised group exercise programmes delivered by suitably qualified professionals, psychological therapies such as cognitive behavioural therapy and acceptance and commitment therapy, and, in certain circumstances, acupuncture. Antidepressants are the one medicine class that may be considered where the benefits outweigh the harms. The emphasis is on helping people to live well with pain, rather than on removing it entirely.

What does NICE advise against?

The same analysis notes that the guideline does not recommend starting several medicines that many people expect to be offered for chronic primary pain: opioids, gabapentinoids, paracetamol, non-steroidal anti-inflammatory drugs and benzodiazepines. This can surprise people who have used them for years, and it can worry families. Staff should never advise someone to stop a prescribed medicine suddenly. Any change should be led by the prescriber, who can plan a safe review. Our guide to polypharmacy and deprescribing explains why regular medicine review is part of good care.

What this means for daily care

• Believe the person. Listen to how pain affects sleep, mood, mobility, relationships and independence, and record it in their own words.
• Support movement. Encourage safe, regular activity in line with advice from the physiotherapist or other clinician. Avoid prolonged rest, and celebrate small gains.
• Support emotional wellbeing. Persistent pain is linked with low mood, worry and isolation. Notice changes, offer company and report concerns early.
• Work with preferences. NG193 puts individual needs and preferences at the heart of care planning, so ask what matters to the person and what has helped before.
• Review regularly. Check how pain is affecting daily life, not only a number on a scale, and share observations with the GP or specialist team.

Setting goals that matter to the person

Because the aim is to live well rather than to remove pain completely, goals should be personal and practical. A person might want to walk to the dining room unaided, join a family meal, sleep through more of the night or get back to a hobby. Agree one or two goals with the person, write down the steps that support them, and review progress together. Keep records factual and respectful. Notes that describe someone as complaining or attention-seeking undermine trust, whereas notes that describe what the person said, did and found helpful guide the whole team.

When people cannot say how much pain they are in

People with dementia, communication difficulties or a learning disability may not be able to describe their pain. Observation tools can help, and our guide to the Abbey Pain Scale explains how staff can assess pain when words are not available. Changes in behaviour, appetite, sleep or mobility may be the first signs that pain is not controlled.

Relationships and trust

The BJGP analysis points to the importance of supportive, collaborative relationships between people and the professionals who help them. Many people with long-term pain have felt disbelieved or passed from service to service. A consistent approach, honest conversations and a shared plan can rebuild confidence. For those whose pain is bound up with past trauma, the principles in our guide to trauma-informed care are especially relevant: safety, choice, collaboration and trust.

Supporting staff to deliver this

Pain care is a skill that develops with training and reflection. Teams benefit from shared language, clear escalation routes and confidence in talking about medicines and non-drug approaches. Learnsignal's CPD resources for health and care staff can help you plan learning.

Frequently asked questions

Does chronic primary pain mean there is nothing wrong? No. NICE describes it as pain with no clear underlying cause, or pain and its impact being out of proportion to any identified cause. It is still real and disabling.

Should staff encourage exercise even when it hurts? Exercise is a core NICE recommendation, but it should be supervised or guided by a qualified professional and tailored to the individual. Staff should follow the plan agreed with the clinical team.

Can we stop a medicine because NICE does not recommend it? No. Never stop a prescribed medicine without the prescriber. Raise the question with the GP or pharmacist so it can be reviewed safely.