Evan Nathan Smith parents’ disappointment at CQC report into North Middlesex University Hospital

Lawyers representing Charles and Betty Smith say the failure to make the necessary improvements at the hospital in the past three years are unacceptable.

Evan died on 25 April 2019 in the hospital in Edmonton. The inquest into his death heard that Evan’s life would have been saved if he had been given a blood transfusion sooner to manage his sickle cell crisis.

The hospital’s haematology team were not made aware that he had been admitted until two days after he arrived at the hospital. And even at day five, his haematological needs had not been addressed. At one point while being treated at the hospital Evan was so desperate for help that he rang 999 from his mobile phone to ask for oxygen because he was refused this by a nurse on his ward.

The coroner said there was a failure to appreciate the significance of Evan’s sickle cell crisis symptoms by those looking after him. He said there was a mindset in those looking after Mr Smith which distracted the treatment away from the need for an urgent exchange transfer to treat the sickle cell symptoms.

Now, following an unannounced focused inspection in August to check on the safety and quality of care of the service, the Care Quality Commission (CQC) has ordered North Middlesex University Hospital Trust to take action to improve its services for patients with red blood cell disorders and it will monitor its progress to ensure the changes are made.

The inspection looked at whether the service for patients with sickle cell disease was safe, effective, caring, responsive and well-led.

The resulting CQC report said the pace of improvement following the serious incident that led to a patient’s death in 2019 was regrettably slow. Learning had not been prioritised and improvements were still needed.

The trust had 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, yet a significant number were not placed there.

The CQC was alarmed that poor communication still meant key staff weren't informed when patients with sickle cell disease were scheduled to be in the operating theatre. This had been a contributory factor in Evan’s death.

As a result of this inspection the overall rating for medical services remains as requires improvement.

In a statement, Betty and Charles Smith said:

“We had hoped that following our son’s death North Middlesex University Hospital would wake up to what had gone wrong in Evan’s care and would never let there be a danger of the same thing happening to other sickle cell patients.

“We are intensely disappointed by the findings of the CQC inspection team, we had hoped that improvements would have been made by now. Evan’s death should never have happened, his care was a great failure and it is a huge disappointment that the same levels of service that let him down are still an issue for the hospital.”

Suzanne White, head of clinical negligence at law firm Leigh Day, who represents Evan Nathan Smith’s parents Betty and Charles Smith, said:

“At the inquest into Evan’s death, the coroner said that if Evan had been given a blood transfusion sooner, he would not have died. The fact that he didn’t have the transfusion in time to save his life was down to negligence on the part of North Middlesex University Hospital, which was put down to lack of training and poor communication.

“Bosses at North Middlesex pledged to address these issues to prevent any other sickle cell sufferer being put at the same fatal risk.

“Now we find that three years later, those issues have not been addressed, change has been slow, the same problems of communication still prevail and vital training to equip staff with the skills to recognise and tackle a sickle cell crisis has not been prioritised. These failings are unacceptable: they are a betrayal of Evan and pledges made following his death, and they put at risk other people across North London who have sickle cell disease. People who live with a condition as common as sickle cell should have absolute confidence that medical staff at their local hospital are equipped with the knowledge and skills to keep them safe.”

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

"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."

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.