In England, around 17,000 adults and children – predominantly of African or African-Caribbean background – live with sickle cell disorder (SCD).

SCD is a gene mutation which causes red blood cells to become irreversibly curved, or sickle shaped. One serious complication, a vaso-occlusive crisis (VOC) occurs when damaged red blood cells block blood vessels.

Causing extreme pain and restricting oxygen supply with the potential of strokes, organ damage and sight loss, it requires urgent treatment and guidelines state effective pain relief should be delivered within 30 minutes.

Exploring delays in administration of pain relief in emergency departments

To understand slow pain management of patients in VOC, researchers at the Behavioural Science Unit (BSU) at NHS England:

• visited NHS hospitals across England to learn how care is delivered in emergency departments (EDs)
• mapped the patient journey from arrival at an ED to receiving pain relief
• interviewed healthcare professionals (HCPs) to get their opinions on barriers and influencers to timely pain relief administration

The many causes of delays and possible solutions to address them were analysed using the behavioural science models COM-B (capability, opportunity, motivation, and behaviour) and EAST (easy, attractive, simple, timely).

Finally, barriers were further explored and actionable solutions codeveloped with healthcare professionals, policymakers, and researchers through a series of workshops.

Our findings – the causes of delays to adequate pain relief

Five main causes of delayed pain relief administration in ED.

1. Low priority in triage

VOCs weren’t always treated as medical emergencies. This can leave patients waiting too long for effective pain relief.

2. Overcrowding and staff shortages

Busy EDs with high patient numbers and limited resources make it difficult for staff to act fast, even when recognising the urgency of a VOC.

3. Limited access to care plans

While almost every patient who had attended at least 1 annual review had a care plan, detailing the most effective treatment plan as laid out by their haematologist, these care plans are not easily and quickly accessible during a crisis.

Paper and patient-held care plans can be misplaced or forgotten; slow IT systems or those lacking an effective search function make it difficult to find the care plan among multiple other medical notes; while a lack of interoperability hinders access to care plans if patients present outside their usual hospital.

This risks inconsistent treatment and delays in decision-making.

4. Lack of training

Too many ED staff lack experience in treating a VOC due to limited training and high staff turnover. This uncertainty slows down care.

5. Unconscious bias and mistrust

Frequent opioid pain relief requests can sometimes be misinterpreted as drug-seeking behaviour. This stigma can lead to hesitation in prescribing adequate pain relief.

Practical solutions

Several ways to improve care were identified and prioritised within the research, some of which are already in development nationally and locally. The solutions outlined seek to overcome the challenges set out above.

1. ED bypass units

Researchers observed that at least 15 steps needed to happen before a patient receives adequate pain relief in a VOC.

To deliver faster access to pain relief and specialist care, several hospitals across the country are implementing a sickle cell disorder ED bypass unit, providing direct access to care.

Some pathways enable these patients to avoid the ED altogether, while others streamline the process after arrival.

These systems are being fully evaluated by the National Institute for Health and Care Research (NIHR) with results due in winter 2025.

2. Improving access to care plans and pain medication

This intervention encapsulates 3 solutions, each of which could be implemented individually if needed:

1. Simple, standardised electronic template for personalised care plans, available online, meaning they are easy to read and cover all the important information.
2. Easily accessible plans saved in a pre-agreed location with alerts and search functions, allowing ED staff quick access to specialist advice.
3. 4 pre-written prescription bundles covering pain relief and any accompanying medication, allowing ED staff to prescribe the most appropriate medication quickly.

Making care plans digitally accessible across NHS trusts would also help prevent delays when patients visit unfamiliar hospitals.

For example, the Royal Free London has trialled linking personalised care plans to pre-written prescriptions.

What’s next?

Recommendations outlined in the BSU report are being reviewed as part of the 2025/26 Sickle Cell and Thalassemia Quality Improvement Programme through the National Healthcare Inequalities Improvement Team.

The programme is working with the Get It Right First Time (GIRFT) programme to explore opportunities for quality improvement for sickle cell provision within emergency departments across the NHS.

Fixing delays in pain relief for people with SCD is a key step in tackling healthcare inequalities.

This research helps pave the way for real change making emergency care more responsive, efficient, and compassionate for those who need it most.

More information about our research is available from NHS England’s National Sickle Cell Disorder and Thalassaemia Improvement team. Please email england.SickleCellReview@nhs.net.