Inspector slams ‘unacceptable’ treatment of sickle cell patients at North Mid

North Middlesex University Hospital NHS Trust has been urged to “take action” to improve its care of patients with red blood cell disorders, following an unannounced inspection by the national health watchdog.

The Care Quality Commission (CQC) told the hospital trust it must make improvements to its services for patients with conditions such as sickle cell disease and thalassaemia. It comes after inspectors made an unannounced visit to the Edmonton hospital last year following a serious incident which resulted in the avoidable death of a patient.

Evan Nathan Smith, aged 21, died in April 2019 at North Mid after developing sepsis following a routine operation. Evan had sickle cell disease, which triggered the sepsis blocking certain blood vessels in the body. But hospital staff did not recognise his symptoms and Evan later died. A coroner ruled in 2021 that his life would have been saved if he’d received the correct treatment.

The NHS trust accepted responsibility for Evan’s death and has since introduced a number of changes to help improve its care, including the creation of a dedicated space for patients with sickle cell disease.

However, Nigel Acheson, CQC’s deputy chief inspector for hospital inspection, said the changes had not gone far enough. He said: “We inspected North Middlesex University Hospital to check on the safety of services for patients with sickle cell disease, following the tragic, and avoidable, death of a patient.

“Regrettably, we found the pace of improvement was slow. Learning had not been prioritised by the trust and improvements still needed to be made. We heard some staff did not take the disease seriously and regarded sickle cell patients as difficult. One patient, in severe pain, said she was made to feel like a drug addict for requesting pain relief. This is totally unacceptable.

“Although the trust said it would put all patients with sickle cell disease on a specialist ward, we heard a significant number were not placed there. We were also extremely concerned that poor communication meant key staff weren’t informed when patients with sickle cell disease were scheduled to be in the operating theatre.

“These patients need a specialist team to support them during surgery and this was a contributory factor in the death of a patient, so it is alarming to find that this was still an issue.”

While Acheson said North Mid was “not alone” in its failings, he added: “We have told the trust that it must take action to improve the service for patients with red blood cell disorders.”

CQC points out in its report that the area served by North Mid has a large population of people likely to suffer from red blood cell disorders – which are more common in black people – and that this was even more reason why staff needed to be well trained in dealing with such conditions. Audit data showed that 100% of sickle cell patients admitted to North Mid experienced delays in observations and that there were “significant delays in administering pain relief” to them.

The CQC inspectors found a range of incidents had occurred, mainly relating to medicines not being available, or errors in administering medication, yet not all incidents had been reported. Examples of unreported incidents included unlabelled blood samples, delays in treatment because of a lack of equipment, and delays in administering pain relief – in some instances because staff couldn’t find the key to the medicine cupboard.

However, CQC did also praise North Mid staff working within the sickle cell service as being “committed and caring professionals” who “did their best to support patients, despite limited support from managers and other teams”. Recent improvements included an electronic flagging system and a sickle cell disease alert sticker for inpatient notes.

Dr Nnenna Osuji, chief executive of North Middlesex University Hospital NHS Trust, said: “The passion of our frontline specialist sickle cell service staff to providing excellent care for patients living with sickle cell disease was noted by the CQC inspection team. I am committed to working with these dedicated colleagues – and the patients and community they so clearly care about – to ensure we develop and deliver outstanding care and experience for local people.

“Our community around North Mid is disproportionately impacted by sickle cell disease, and we are determined to meet and sustain the excellent standard of care they deserve. Care of patients with red cell disorders, including both sickle cell anaemia and thalassaemia, is a priority for North Mid, given the prevalence of these conditions in our local population.

“The death of Evan Nathan Smith was a tragedy and I want to reiterate our apology and condolences to his family and to our community whose confidence has been shaken. We have made changes at North Mid as a direct result of Evan’s death and are making progress on our comprehensive improvement plan for the service. These include developing an allocated space on one of our wards for patients with sickle cell disease; daily review at our trust-wide site meeting of patients with sickle cell disorder, and enhanced training for staff.

“We continue to provide a dedicated psychologist to the service and inpatient access to dieticians and therapists as needed.

“North Mid engages with specialist peer review for haemoglobinopathies and is actively working with our patients and local communities to make improvements to ensure the significant population need is reflected in our planning and strategy.”