Amirah Khalifa

PFD Report Partially Responded Ref: 2023-0481
Date of Report 27 November 2023
Coroner Anita Bhardwaj
Response Deadline est. 22 January 2024
Coroner's Concerns (AI summary)
The Shared Care Record system lacks automated flags for long-term steroid monitoring and a field for recording clinical indications, posing risks for unsafe prescribing.
View full coroner's concerns
1. The current SCR model does not appear to automatically flag drugs such as steroids, which are known to have potentially fatal side effects if used for the long term without appropriate monitoring. It is understood that some drugs do have these flags, but that steroids do not.
2. In addition, the SCR does not have a space recording for clinical indication for initiation of the drugs, to aid a future prescriber to consider whether the drug is still clinically indicated.
Responses
NHS England NHS / Health Body
27 Nov 2023
Action Planned
NHS England is migrating users to the National Care Records Service (NCRS), and expects a final toolkit from the National Overprescribing Review to be published in May 2024. Liverpool University Hospitals NHS Foundation Trust is also making completion of the ‘changes to Medication’ part of Discharge Summary documentation compulsory and ensuring that the indication for long-term steroid treatment is included in drug initiation, clerking documentation, discharge letters, medicines reconciliation and primary care records. (AI summary)
View full response
Dear Coroner,

Re: Regulation 28 Report to Prevent Future Deaths – Amirah Khalifa who died on 31 January 2023.

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 27 November 2023 concerning the death of Amirah Khalifa on 31 January 2023. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Amirah’s family and loved ones. NHS England are keen to assure the family and the coroner that the concerns raised about Amirah’s care have been listened to and reflected upon.

Your Report raises the concern that the current Summary Care Record (SCR) model does not appear to automatically flag drugs such as steroids which may have potentially fatal side effects when used long term. You also raised that the SCR does not have space for recording the clinical indication for initiation of certain drugs to aid future prescribers.

The National Care Records Service is the improved successor to the Summary Care Record application (SCRa). The NCRS has been developed gradually over the last 4- 5 years, and as the NCRS product has matured, we have been migrating service users across from SCRa to NCRS throughout 2023.

NCRS provide a quick, secure way to access national patient information to improve clinical decision making and healthcare outcomes and it is free to use. It includes additional features and services beyond the legacy SCRa product. The service is a web-based application and can be accessed regardless of what IT system an organisation is using. NCRS provides access to an ever-increasing number of centrally provisioned national digital services that support the direct care of patients, including:

• Summary Care Records (SCR) - core and Additional Information
• National Record Locator Service (NRL) – pointers to and retrieval of data held in local provider systems.

Details of long-term conditions, significant medical history and the reason for any prescribed medication, should now be included by default for patients with an SCR, unless they have previously told the NHS that they did not want this information to be shared. For more information, and to illustrate the type of content included in an SCR, an example SCR is available here: Additional Information in the SCR. National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG

24 January 2024

It is also relevant to the circumstances of Amirah’s care to note that NHS England has commissioned the Royal Pharmaceutical Society (RPS) and the Royal College of General Practitioners (RCGP) to develop tools and guidance to help primary care healthcare professionals to improve issues concerning repeat prescribing. This follows the publication in September 2021 of the Good for you, good for us, good for everybody plan to reduce overprescribing in England and to ensure that patients get the right treatment for their needs. The final toolkit is expected to be published in May
2024.

NHS England has also engaged with Cheshire and Merseyside Integrated Care Boad on the circumstances of Amirah’s care raised in your Report and has been sighted on the Serious Incident Review undertaken by Liverpool University Hospitals NHS Foundation Trust (‘the Trust’). As part of the review, the Trust has identified clear opportunities to prevent a similar incident occurring again and NHS England welcomes the actions outlined in the Trust’s Improvement Plan. These include:

• Making the completion of the ‘changes to Medication’ part of Discharge Summary documentation compulsory.
• Ensuring that the indication for long-term steroid treatment is included in drug initiation, clerking documentation, discharge letters, medicines reconciliation and primary care records.
• Making the medicines section of clinical letters compulsory.

NHS England would refer you to the Trust for any further information on their review and action plan.

I would also like to provide further assurances on national NHS England work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors, and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around preventable deaths are shared across the NHS at both a national and regional level and helps us pay close attention to any emerging trends that may require further review and action.

Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.
Sent To
  • NHS England
  • NHS Improvement
Response Status
Linked responses 1 of 2
56-Day Deadline 22 Jan 2024
About PFD responses

Organisations named in PFD reports must respond within 56 days explaining what actions they are taking.

Source: Courts and Tribunals Judiciary

Report Sections
Investigation and Inquest
On 06 February 2023 I commenced an investigation into the death of Amirah KHALIFA aged
42. The investigation concluded at the end of the inquest on 24 November 2023. The conclusion of the inquest was that: Narrative Conclusion: Inappropriate and prolonged administration of steroids contributed to by neglect.
Circumstances of the Death
Amirah Khalifa was a 41 year old lady who had a complex medical history, including a presumed hepatocellular carcinoma for which she underwent a TACE (trans arterial chemoembolization) in 2016. On 31 August 2018 Amirah was admitted to the Royal Liverpool Hospital presenting with vomiting and right upper quadrant pain, a known complication after a TACE procedure. Various medications were prescribed but the pain was ongoing. On 11 September 2018, whilst still in hospital, Amirah was prescribed dexamethasone (a steroid), initially twice daily and then once a day. She was then discharged from hospital. A discharge summary was sent to her General Practice (GP) requesting the steroid medication to be reviewed. When the steroids were prescribed there was no indication noted as to the length of the intended treatment course in the clinical notes or in the discharge letter issued by the hospital team. In April 2019 the steroids were noted as a repeat prescription in the GP records rather than an acute prescription. It is unclear upon what basis this was done. On 12 June 2019 Amirah was admitted to the Royal Liverpool University Hospital with dizzy spells. It was noted that her high blood pressure was poorly controlled. Her dexamethasone was continued in hospital and on discharge. A discharge summary was sent to her GP practice with the steroids to be continued. On 12 September 2019 Amirah was admitted to the Royal Liverpool hospital with similar symptoms. Her dexamethasone was continued again in hospital and on discharge. Throughout 2019-2022 Amirah had numerous consultations with various specialists in the Royal Liverpool University Hospital. On 29 December 2022 Amirah was admitted to the Royal Liverpool University Hospital feeling generally unwell and with leg pain. Treating medical professionals deemed that Amirah's case was complex and multiple organ systems were investigated and treated. Despite active treatment Amirah deteriorated and died on 31 January 2023. The post mortem examination found it was more likely than not Amirah died as a result of multiple organ failure caused by sepsis and intestinal haemorrhage as a result of long term steroid therapy. Throughout, on each discharge from hospital, a discharge letter was sent to Amirah’s GP and was generally to continue the dexamethasone. There were a number of failures relating to the care and treatment afforded to Amirah; through numerous appointments an incomplete medication history was taken and documented which did not include dexamethasone. Amirah had multiple complex conditions and was under the care of numerous specialists, many of whom clearly did not appreciate she was on steroids, and had been, for a lengthy period of time. Amirah was seen by numerous clinicians both in the hospital and in the community and at no stage was it questioned as to why she was still on the steroids, and why at the high dose she was on. Evidence has been heard that it was rare for a patient to be on these steroids at this dose for a lengthy period of time. Amirah presented with symptoms clearly suggestive of the possibility of complications of steroid use, namely uncontrollable blood pressure, diabetes, swelling and cognitive impairment. There was a failure to recognise these obvious presentations and the link between them and the long term steroid use. There was a failure to document in the clinical notes and / or in the discharge letter, the indication or length of the dexamethasone tablets. This failure prevented adequate instructions being provided to Amirah’s GP as to the intended length of the dexamethasone treatment and monitoring of the same. There was a failure for the GP to clarify the discharge with the hospital and to review the medication, this failure was exacerbated by the fact the prescription was changed to repeat from acute with no apparent reason. Overall, there was a catalogue of missed opportunities both in hospital as well as in the community to identify that Amirah remained unnecessarily on dexamethasone tablets despite multiple reviews as an inpatient and outpatient. Even when the ongoing prescription was identified, and Amirah was symptomatic of Cushing’s disease and steroid induced diabetes the correct action to wean treatment completely was not undertaken. It is a basic and fundamental expectation for a clinician in charge of a patient’s care to monitor and review prescribed medication, particularly acute medication such as steroids. There was a failure to do this for Amirah despite the fact that there were numerous opportunities to do so over a lengthy period of time. The accumulation of failures through the primary and secondary care services has led to a gross failure to provide basic medical attention to Amirah who was in a dependent position and had every reason to rely upon those who had management of her care and treatment to prescribe, monitor and review her medication. It is more likely than not the inappropriate and prolonged administration of steroids caused Amirah’s death.
Copies Sent To
Royal Liverpool University Hospital Sandringham Medical Centre
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Data sourced from Courts and Tribunals Judiciary under the Open Government Licence.