'Shocking' Delays in Pain Relief for Sickle Cell Patients

Liam Davenport

April 04, 2022

MANCHESTER — The delivery of pain relief to adult and paediatric patients presenting to hospital with an acute pain episode is often delayed, shows an national audit that reveals wide variations in service and patchy training.

Set up in response to poor patient satisfaction with secondary for the condition care, the audit covers 56 adult and/or paediatric sickle cell services across England, which treat up to 800 patients each.

The results showed that 82% of sickle cell disease patients presented with acute pain to the emergency department. A reported 61% centres had individualised pain plans, although they were often not available for all.

Adult patients typically waited 30-60 minutes to receive their first pain relief in centres without ambulatory services, although waits of 80 minutes were recorded. In paediatric patients, this was given after an average of 20-60 minutes, but they could have to wait up to 128 minutes. This is despite 2012 National Institute for Health and Care Excellence (NICE) guidance, which states that analgesia should be offered "within 30 minutes of presentation to all patients presenting at hospital with an acute painful sickle cell episode".

However, the reality is that "the time to first analgesia is often delayed," said presenter Sanne Lugthart, MD, PhD, a consultant haematologist at University Hospitals Bristol NHS Foundation Trust, Bristol.

Moreover, "protocols of pain management in sickle cell disease show a large variation" and that education and training for different specialties, including emergency teams, "is currently lacking or given very infrequently".

The research was presented at the British Society for Haematology 62nd Annual Scientific Meeting on April 5.

'Shocking' Results, Considering Guidance Has Existed for About 10 Years

For Subarna Chakravorty, MD, PhD, who chaired the session, "the striking thing was that the NICE guidance has been around for 10 years, and still only 20% of people are getting their analgesia within the 30-minute time”.

“That is really shocking.”

"Whatever is in place doesn’t seem to work, so it needs quite a radical rethink about what’s going on," Dr Chakravorty, a consultant paediatric haematologist at King’s College Hospital, London, told Medscape UK.

Asked in the post-presentation discussion why she thinks it is taking so long to implement the NICE guidance, Dr Langthart said the "solution in fixing that is obviously complex".

"We need to do is have a close working relationship with the emergency department and we shouldn’t underestimate the fact that…it’s sometime difficult for the emergency department to see and understand the importance of giving timely analgesia."

Dr Langthart suggested that a protocol stating each sickle cell disease patient who comes in with pain should be given immediate pain relief "might be the way forward", as there is already a similar protocol for acute myocardial infarction. But that raises the question as to whether that will work for everyone who presents at the emergency department, particularly in larger centres, which "should have an individualised pain protocol".

Feedback from Patients Also Low for Ambulance Care

Another consideration is the delivery of pain relief in the ambulance, before patients reached the emergency department. Dr Langthart confirmed that the Group is working on "involving the ambulance service" so that they can have information on the sickle cell disease patient available, and report that relief has been given.

Dr Langthart began by noting that pain is the "main hallmark" of sickle cell disease, and patients experiencing severe pain seek treatment in an acute hospital setting, whether that be the emergency department, "directly to the ward", or via ambulatory services. She explained, however, that feedback from patients has revealed a "lack of satisfaction with the quality of care" that they receive.

On the recommendation of the NHS Clinical Reference Group, the National Sickle Pain Group was established, which includes adult and paediatric haematologists, acute and chronic pain specialists, emergency department consultants, and other related experts.

The Group aims to improve pain management in sickle cell disease by understanding the "variety" of acute and chronic pain management used across England, as well as "identify differences but also unpick what works in certain centres, and what does not", said Dr Langthart.

Audit Aims to Help Improve Pain Management in Sickle Cell Disease

To those ends, an audit was developed in June 2021 and circulated to all haemoglobinopathy coordinating centres in July of that year for distribution to specialist and local services. In addition, adult and paediatric sickle cell disease services were asked to respond separately.

Across England, 39 centres completed the audit, covering a total of 56 responses for adult (46%) and paediatric (56%) services. The number of sickle cell disease patients per service ranged from zero to 800. The majority of responses (51%) were from local haemoglobinopathy services, with a further 15% from specialist services, and 33% from coordinating centres.

Dr Langthart showed that the "first point of call" for patients presenting with acute pain was the emergency department in 82% of responders, with 42% of paediatric patients and 57% adult patients treated in the emergency department only, rather than also on a ward or day unit.

Almost 90% of the services in the audit had a generic pain protocol available, with the most common analgesia used being:

Dr Langthart pointed out that an individualised, rather than general, pain protocol was used  in 61% of services, and this was available for only a selected group of patients in 71% of centres. Just 29% of services had an individual pain protocol for all patients.

An ambulatory care service for pain management in sickle cell disease was available in 25% of centres, with opening times and days per week varying widely. Some of these ambulatory services were available for all sickle cell disease patients, while others were for known patients only or those who booked an appointment, or for patients who had no "red flags". Centres with ambulatory services tended to be more likely to meet the NHS guidance on delivering pain relief within 30 minutes of meeting the first analgesia criteria, with 50% meeting the target.

In contrast, the average time to first analgesia in centres without ambulatory services was 30-60 minutes in adult services, at a maximum wait of 80 minutes, and was 20-60 minutes in paediatric services, at a maximum wait of 128 minutes.

The average length of hospital stay for patients adults with acute pain was 3-5 days, extending beyond 21 days in 0-5% of patients. Between 2-10% of patients had three or more hospital admissions per year.

Dr Langthart also found a "huge variety" in the training delivered by centres for different specialties and staff that encounter sickle cell disease patients.

Training for consultants in haematology, emergency departments and acute medicine and paediatric services "is delivered very infrequently, and in a low percentage of centres," she said.

The "positive side" is that many of the centres have examples of training and there is a "willingness to share" this with other centres.

She noted, however, that only 14 of the centres included in the audit have a patient satisfaction questionnaire.

No funding declared.

Langthart declares relationships with Novartis, GBT, Elsevier Health.

No other relevant financial relationships declared.

British Society for Haematology 62nd Annual Scientific Meeting: Abstract BSH22-OR09. Presented April 4.

Follow Medscape on FacebookTwitterInstagram, and YouTube.


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.