"GDPR Says Yes"

The GP made a referral to secondary mental health services, but this was not acted on as Leya was already under the care of the primary MH team. The primary team also failed to act on the referral as they didn't feel it was urgent enough.

"Matthew’s death was probably the result of systemic failures across multiple agencies including the Prison services.... There was inadequate communication between agencies and a lack of information sharing. This probably led to a failure to identify his deteriorating mental health and increasing suicide risk.

Multiple failures including: - Arranging a telephone appointment for someone known to be hard of hearing - Not following up when he didn't answer the phone for the appointment - No communication between the teams treating him

a. There was no evidence of any formal investigation having been undertaken into how the referral for ERCP became lost. It appears that only during the course of Inquest proceedings did the issue relating to the lost referral become known to the Health Board. Even once it became known to them in 2022 there was still no investigation undertaken. It is not understood at all which incidents that occur are to be investigated. I have issued a number of Prevention of Future Death Reports relating to investigations and governance and yet these concerns continue. I am not in any way satisfied that improvements have occurred. b. Given that no investigation was conducted to understand how the issue may have occurred there has been no learning, change or improvement to ensure it is not repeated. I have been provided with no assurances in this regard. c. There was no evidence that any audits had taken place to review whether any other patients’ referrals had become ‘lost’. d. Matters relating to the ERCP which did not take place were identified by the Medical Examiners in their report dated 4 days after the deceased’s death. There was no evidence as to whether the Health Board had been made aware of the concerns therein and if so, what action they had undertaken as a result. e. Evidence was heard relating to electronic notes and referrals. Such referrals remain paper based and there is no indication as yet when these will be fully electronic. I am aware that this national strategy is ongoing but the time it is taking is putting patients’ lives at risk.

"Multiple pieces of relevant information regarding [REDACTED] current illness were contained in disparate record ‘silos’. It was difficult for clinicians to access this information and, as such, it was not available to the reviewing psychiatric team, in particular. "I am concerned that the previous focus on access to medical records, which was to occur through the NHS Programme for IT, has been lost and that the new focus on patient access to GP records will not address the risks posed by the current state of record sharing within the NHS."

Donna had an atypical eating disorder which was not picked up by the MH team when she was admitted to hospital. As a result she was discharged. When she came back into hospital three days later, the notes from her previous stay weren't available to the clinicians assessing her. She was again discharged home, where she died.

Jessie... where to start? The PFD report itself is addressed to the DHSC, and covers "the total inadequate level of community provision for the care and treatment of those with suffering with Autism. This is a national problem and sadly leads to many experiencing unnecessary admissions to inpatient mental health facilities and also A&E attendances." A lot of further detail emerged during the inquest, including failures to communicate both within and across the prrofessional teams caring for Jessie; failure to talk to (and listen to) Jessie and her parents; and a lack of professional/clinical curiosity which meant staff were not identifying and probing her underlying needs. Whilst I've been fortunate to find this further detail, it suggests that there may be more PFD reports providing evidence of these and perhaps other problems, and that the 228 reports I've identified here may only offer a partial view.

Jessie... where to start? The PFD report itself is addressed to the DHSC, and covers "the total inadequate level of community provision for the care and treatment of those with suffering with Autism. This is a national problem and sadly leads to many experiencing unnecessary admissions to inpatient mental health facilities and also A&E attendances." A lot of further detail emerged during the inquest, including failures to communicate both within and across the prrofessional teams caring for Jessie; failure to talk to (and listen to) Jessie and her parents; and a lack of professional/clinical curiosity which meant staff were not identifying and probing her underlying needs. Whilst I've been fortunate to find this further detail, it suggests that there may be more PFD reports providing evidence of these and perhaps other problems, and that the 228 reports I've identified here may only offer a partial view.

Jessie... where to start? The PFD report itself is addressed to the DHSC, and covers "the total inadequate level of community provision for the care and treatment of those with suffering with Autism. This is a national problem and sadly leads to many experiencing unnecessary admissions to inpatient mental health facilities and also A&E attendances." A lot of further detail emerged during the inquest, including failures to communicate both within and across the prrofessional teams caring for Jessie; failure to talk to (and listen to) Jessie and her parents; and a lack of professional/clinical curiosity which meant staff were not identifying and probing her underlying needs. Whilst I've been fortunate to find this further detail, it suggests that there may be more PFD reports providing evidence of these and perhaps other problems, and that the 228 reports I've identified here may only offer a partial view.

Anna was sectioned as she had suicidal thoughts. She was not observed as she should have been, partly due to staffing pressures, but staff backfilled the observation records to show that obs were being carried out correctly. The Coroner also noted an issue about messages from Anna's mother not being recorded or passed to staff, and about poor handover from day to night shift staff.

Failure by ASC to take appropriate action when a safeguarding concern was raised (self-neglect). Failure to act on a referral for a needs assessment. Multiple general failures to communicate between teams within ASC.

Karmchand was admitted to hospital with acute intestinal obstruction. He was placed on the wrong referral pathway, resulting in severe delay to the surgery he needed. Observations were not carried out properly while he was awaiting surgery. Karmchand was unable to communicate the pain he was feeling to hospital staff. His family raised concerns, as did hospital staff who knew him, "but adequate notice does not appear to have been taken."

Michaela was in a relationship with a prolific offender who murdered her in her home by stabbing her in the eye. The Coroner found multiple failings across a number of services, including police, probation and adult and children's social care. These included: - An inadequate assessment of the risk posed to Michaela and her children by her partner - Multiple failures to communicate between agencies - A lack of professional curiosity leading to a failure to investigate the perpetrator's mental impairment, despite clear warning signs - Failure to act on or share information received from family members. The PFD report quotes from the Coroner's full judgement, which is not available at judiciary.uk, but which is likely to add clarity about these failings and the steps needed to correct them.

Benjamin died in prison due to toxicity from prescribed medication. “In evidence there were discrepancies between the policies in place and the understanding of healthcare staff as to what information could be shared with prison staff and when it should be shared. “Some healthcare staff in evidence indicated they would not share information about medication in any circumstances. “The healthcare policy and practice of healthcare staff in relation to information sharing does not align with PSI64/2011 that information can be shared without a prisoner’s consent if it is considered necessary to protect the individual or anyone else from the risk of death or serious harm.”

Morgan-Rose took her life while sectioned under the MHA. She was 18 with a diagnosis of Autism Spectrum Disorder; her transition from Children's to Adult1 Social Care had been badly managed, with a lack of information transfer between the two serevices and with no consideration of her own anxieties. MHU staff consistently failed to engage with Morgan-Rose, to the point where she felt they didn't have time for her. They failed to monitor her as they were required to, falsifying observation records and relying on the Oxevision automated observation system instead of face-to-face observations. When Oxevision triggered an alarm to say she had been unattended in the bathroom for three minutes, which should have resulted in an immediate welfare check, the system was reset by an unknown person and Morgan-Rose was left in the bathroom for 50 minutes. Staff had also failed to pick up on warning signals in her behaviour which should have led to heightened alertness. Basic record-keeping was extremely poor, as was the oversight and monitoring of records by senior staff.

Rhys was discharged from hospital following spinal surgery. He and his family were not given clear information about post-surgical risks of VTE or how to mitigate them. He was offered medication, but in the absence of any advice about why it was needed, he declined it. The decision-making process around his discharge was found to be deeply flawed.

(1) During the inquest, it became clear that one significant entry in the clinical notes made by someone in a separate service commissioned by the Essex Partnership University Trust, and which expressed a very specific and imminent intention from the deceased to end her life, was not seen by others in the clinical team. This was almost certainly because the clinical record does not present on computer screens as a continuous chronological running record, but is instead viewed thematically. That means that readers are likely to look at entries made within their particular clinical team, rather than see what others have recorded more recently. There is an obvious risk that critical and important information garnered by others and put into the medical records will not be seen, and that those making clinical decisions on risk management will thus be unaware of potentially very significant information. The evidence was such that neither the care co- Ordinator nor the consultant psychiatrist as the medical lead of the service specifically considered the structured risk management tools that the Trust operates, preferring to rely on clinical experience and judgment alone. There may be a risk that not using such risk management tools in combination with clinical experience and judgment, particularly if this is being done by one clinician at an appointment rather than multidisciplinary discussion of changes in presentation, may lead to information being missed. There was also evidence about the measures that the British Transport Police had taken, seeking to provide additional support by setting up multi- agency support plan, which provided a system for alerting a number of people including the deceased’s care- co-ordinator, when she attended at railway stations. In fact, for various reasons, although there are several known attendances at railway stations, none were passed on to the care co- Ordinator. The evidence at the inquest was that British Transport Police does not have the resources always to provide information about attendances at unstaffed stations (although in fact, one such attendance had been known about but was not passed on). The plan as presented does not make it entirely clear what the limitations in relation to information from attendances at unstaffed stations may be, and should it remain the position that BTP lacks the resources to identify all such attendances at railway stations by persons at specific risk of suicide on the railway, there is a risk that those expecting to receive information under such a plan may not realise that the plan will often not assist where its subject is attending unmanned stations.

Miles was arrested while driving under the influence of drink and drugs. He had longstanding mental health needs and was experiencing a psychotic episode. The Police appear not to have realised this and didn't carry out any meaningful assessment of his mental health. They didn't pay adequate attention to information provided by his parents, Adult Social Care and the Mental Health Line. Miles was released from custody, and subsequently crashed his car into an HGV while still suffering a psychotic episode.

On 29 September 2022, Kevin was discovered deceased in his cell, having died as a result of ligature asphyxiation. He had a long history of mental ill health, paranoia and self-harm behaviours. He was on an Assessment, Care in Custody and Teamwork (ACCT) plan. However: - Information about Kevin's needs was not being shared between staff at handover - The ACCT plan itself was unavailable to staff on the day of his death - a day known to be a trigger date for Kevin - as it had been removed for quality assurance - Staff were not trained in ACCT observations, and some were simply completing "signs of life" checks" - After Kevin's death, records were falsified to state that ACCT checks had been carried out

Trevor died in prison. His cause of death was Sudden Unexpected Death in Epilepsy (SUDEP). His epilepsy was known to prison healthcare staff but not to prison staff. There was no seizure care plan, no seizure diary, and no means of monitoring his condition. Response from prison healthcare provider: “As with patients in the community, medical records are highly sensitive and personal to the individual. They are not shared with prison staff for reasons of medical confidentiality.”

Trevor died in prison. His cause of death was Sudden Unexpected Death in Epilepsy (SUDEP). His epilepsy was known to prison healthcare staff but not to prison staff. There was no seizure care plan, no seizure diary, and no means of monitoring his condition. Response from prison healthcare provider: “As with patients in the community, medical records are highly sensitive and personal to the individual. They are not shared with prison staff for reasons of medical confidentiality.”

– Evidence was heard that at the time of the inquest radiologists do not have access to patient’ medical notes and base their reporting on a summary document submitted by the department requiring imaging. The summary document in Mr MORETON’s case was seen to be deficient in that it omitted his symptom of fever. It was heard in evidence a radiologist would need to telephone the department in question or go there to inspect the notes. Their awareness of a patient’s condition is based on a telephone call referral followed by a summary document which can be at odds with each. – It is of concern that the use of telephone referral system and summary could contain errors and the radiologist must rely on this information, with no quick way to inspect a patient’s notes. – The evidence also dealt with radiologists working in 2 hour triage shifts in a hectic environment where those clinicians receiving the referral seldom were the clinicians who carried out the imaging. The inference was the arrangement was susceptible to error. – Over the course of the inquest evidence was heard on a number of issues where information passed to and from clinicians involved in Mr MORETON’s care was inaccurate and misleading. – Assumptions were made that, Mr MORETON was improving clinically when a surgical opinion was sought, this was incorrect. – It was assumed Mr MORETON would be referred for a surgical opinion by ED department clinicians, when in fact none took place. – Clinicians in Newcastle Upon Tyne when asked for advice were under the impression treatment was working as it was mentioned his discharge from hospital was comptemplated – this was not the case. – Overall I am concerned by the poor and misleading communications between clinicians, departments and Hospital Trusts on matters of vital importance to patient care.

1. There was a limited risk assessment and risk management plan documented for Gerard on ward B2 now Beech ward 2. There was an inadequate door board system for monitoring the return of patients after unescorted leave on ward B2. The same arrangements remain currently, despite the ward move to Beech ward on new premises 3. There was extremely limited family and carer involvement in Gerard’s care, with no involvement in the care plan, nor involvement in ward rounds on ward B2 now Beech ward 4. There was limited awareness of the ligature risk reduction pathway by staff on B2 now Beech ward

Whether there is sufficient regulation of transport operators who provide category 1 home to school transport services to Special Educational Needs children? The following specific issues were identified: The patient safety plans are not always read and understood by transport crew. Home visits between passenger and transport crew often do not occur when contractually required. The local authority are often not notified of personnel changes in the transport crew. The need for proper handovers at drop off and pick up is not understood. There is no requirement for transport crew to be qualified first aiders. The passenger assessment test requires further improvement. There is no comprehensive schedule for inspection of transport operators. There is no mandatory training or forums for operators to attend where information can be cascaded to them. Operators have to approach multiple organisations which leads to confusion and inconsistency.

Keith was diagnosed through MRI as suffering from degeneration of his lumbar spine which caused impingement of his lower sciatic nerve resulting in chronic pain. He called his GP on three successive days as his pain was increasing. The response from the surgery was chaotic and at times the behaviour of those taking telephone calls was unprofessional and inappropriate. The surgery failed to call him back as promised. On the evening of the third day his family called an ambulance, but Keith suffered a heart attack and died despite CPR.

Multiple concerns about the Trust's approach to risk assessment (including a failure to prescribe appropriate medication); the way they carried out observations; and failure to pay regard to information provided by Larry's partner, which was put on the record but ignored.

Nursery failed to listen to Oliver's parents about how far he had progressed with weaning, and failed to tell his parents what they were feeding him. Oliver choked.

Kirsty was diagnosed with both a learning disability and mental health conditions (EUPD and ADHD). The Coroner highlighted a lack of provision for LD/MH co-morbidities and a lack of communication between the two disciplines. In addition: "I remain concerned (as it is a matter I have raised on many occasions at inquest and again as a result of the experiences of the family in this case), that communication with the families of patients with mental health difficulties is still not being effectively achieved. Nor are such families being suffiently, effectively and meaningfuly listened to or understood when they voice concerns, based on their experience of the patient outside of a treatement or assessment environment. Consequently, I am concerned that such matters are not being reflected sufficiently or frequently enough in the onward treatment of those patients or in the clinical curiosity afforded to their conditions. "There remains an over-focus on patient centric assessments and patient only responses. It is recognised that patients can present quite differently to and in the presence of their families, who know them intimately, to how they may (or may be able to) present to assessing clinicians – with or without the intent to mask their condition. "Whilst consent to share is an understandable barrier in some cases, there should not be a bar to listening to or to actively encouraging feedback and input from families, especially where a family’s concerns are heightened by any sudden or marked changes in the behaviours, mood or presentation of their relative outside of the clinical/assessment environment – particularly in the case of neurodiversity. "Unless all concerns are heard and considered and all availble information is taken on board, holistically, there is a continuing risk that the masking of mental health conditions and the deterioration of them may occur or that significant red flags are missed. In this case, the family’s increasingly desperate concerns voiced about their daughter’s evident mental health deterioration in her final days went un-responded."