Care Quality Commission News

03 Feb 2022

CQC tells North Middlesex University Hospital Trust to make improvements to its services for patients with Sickle Cell Disease

Press release embargoed until 00.01hrs on Friday 4 February

A link to the embargoed inspection report is at the end of this email 

The Care Quality Commission (CQC) has told North Middlesex University Hospital Trust to make improvements to its services for patients with red blood cell disorders, such as sickle cell disease* and thalassaemia.**

CQC carried out an unannounced focused inspection in August to check on the safety and quality of care of the service, following a serious incident which resulted in the avoidable death of a patient in 2019.

The inspection looked at whether the service for patients with sickle cell disease was safe, effective, caring, responsive and well-led. No other parts of the core medical care service were inspected. Due to the nature of this focused inspection, the overall rating for medical services remains as requires improvement.

Nigel Acheson, CQC’s deputy chief inspector for hospital inspection, said:

“We inspected North Middlesex University Hospital to check on the safety of services for patients with sickle cell disease, following a serious incident resulting in 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 and fully embedded. We heard that some staff did not take the disease seriously and regarded sickle cell patients as difficult. One patient, who was 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, with the right mix of staff to care for their needs, 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.

“We have told the trust that it must take action to improve the service for patients with red blood cell disorders and we will monitor its progress to ensure that these are made.

“Unfortunately, North Middlesex University Hospital is not alone in its failings when it comes to understanding and prioritising the specialised treatment required by patients with red blood cell disorders. We are aware of other incidences of sickle cell patients experiencing sub-standard care in hospitals, and elsewhere in the healthcare system, due to low awareness of the disease amongst staff. This cannot be allowed to continue, and we will ensure that it does not.”

Inspectors found the following during this inspection:

  • Despite serving one of the larger populations of patients with red blood cell disorders such as sickle cell disease and thalassaemia the service received limited support from the trust board. Consequently, staffing, training and equipment were not always sufficient. The trust did not engage well with their local community to understand the needs of people who live with sickle cell disease and plan accordingly.
  • Audit data showed that 100% of sickle cell patients admitted experienced delays in observations. Inspectors also found that there were significant delays in administering pain relief to these patients. This is despite guidance from the National Institute for Health and Care Excellence (NICE) which states that all patients experiencing a sickle cell crisis should be treated as a medical emergency.
  • The service only had one automated blood exchange machine and had to share another machine with the paediatric department, which meant that patients’ treatment was sometimes delayed. There were no machines available to help people control their pain, even though this is standard equipment used by specialist sickle cell services.
  • Although taking blood or placing a tube into a vein to administer medicine can be particularly challenging for patients with a red blood cell disorder, some nurses in the service did not have adequate training to ensure they could perform these procedures safely, so they were unable to carry out these routine tasks.
  • The service was mainly reactive, staff did not have the capacity or support from the medical division to actively improve and develop it. There were no effective internal governance arrangements and very few meetings were happening to discuss patient outcomes, audits, risks, complaints and other performance indicators.
  • The trust struggled to identify a lead for the service following the departure of the specialist red blood cell lead consultant, due to a national shortage of red cell consultants.
  • The service focused too narrowly on the physical health of patients and there was limited support for their psychological and psychosocial needs. The service did not have access to dieticians, physiotherapists, or occupational health practitioners to holistically assess and support patients’ complex needs.
  • Staff used electronic records in the emergency department, but paper records on the wards, which made it difficult to access a patient’s complete set of medical records and therefore to spot potential signs of deterioration.
  • The service was not carrying out regular checks to ensure that staff were following up-to-date policies to ensure they were delivering high quality care in line with best practice and national guidance and some information and policies used by staff were out of date.
  • 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 due to a lack of available equipment, delays in administering pain relief, in some instances, because staff couldn’t find the key to the medicine cupboard meaning some patients were left in severe pain.


  • The staff working within the sickle cell service were committed and caring professionals and did their best to support patients, despite limited support from managers and other teams.
  • The trust organised a sickle cell awareness day in June and the service issued the first copy of a sickle cell and thalassaemia patient’s newsletter to inform patients about key changes and developments. The service planned to produce three newsletters per year.
  • The service introduced an electronic flagging system to alert the haematology team when patients with sickle cell disease were admitted. Staff wanted to develop this further to be able to track patient’s journey through the hospital.
  • The service had developed, and was in the process of rolling out, a ‘sickle 6’ carry card and a sickle cell disease alert sticker for inpatient notes to help the non-haematology teams care for patients with the disorder.

The report will be published on the website on Friday 4 February.

Contact Information

Nicki Dallison

Notes to editors

Notes to editor

Throughout the COVID-19 pandemic, the CQC’s regulatory role has not changed. CQC’s core purpose of keeping people safe is always driving decisions about when and where we inspect. As the risks from the pandemic change, we are evolving how we regulate services to reflect what we have learnt during this time. You can read more about our current approach on our website.   

CQC is listening to what people are saying about services to help detect any changes in care. If there is evidence people are at immediate risk of harm, CQC can and will take action to ensure that people are being kept safe. People can give feedback about their care to CQC via the details below.   

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