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Key messages Document the swallow status of all patients with PD at the point of referral to hospital Screen patients with PD for swallowing difficulties at admission Refer patients with PD who have swallowing difficulties (or who have problems with communication) to speech and language therapy Notify the specialist PD service (hospital and/or community) when a patient with PD is admitted, if there is any indication from the notes, or following discussion with the patient or their relatives/carers, that there has been a deterioration or progression of their clinical state Provide written information at discharge on how to manage swallowing difficulties

Learn about CUSP Assemble the Team Engage the Senior Executive Understand the Science of Safety Identify Defects Through Sensemaking Implement Teamwork and Communication Apply CUSP The Role of the Nurse Manager Spread Patient and Family Engagement Learn about CUSP Assemble the Team Engage the Senior Executive Understand the Science of Safety Identify Defects Through Sensemaking Implement Teamwork and Communication Apply CUSP The Role of the Nurse Manager Spread Patient and Family Engagement

Elizabeth Dixon was a child with special health needs. She had been born prematurely at Frimley Park Hospital on 14 December 2000. Following treatment and care at Great Ormond Street Hospital and a children’s hospice she was nursed at home under a care package. As a result of a failure to clear a tracheostomy tube she asphyxiated and was pronounced dead at Frimley Park hospital on 4 December 2001. The investigation chaired by Dr Bill Kirkup looked at the events surrounding the care of Elizabeth and makes a series of recommendations in respect of the failures in the care she received from the NHS. Recommendations Hypertension (high blood pressure) in infants is a problem that is under-recognised and inconsistently managed, leading to significant complications. Its profile should be raised with clinicians; there should be a single standard set of charts showing the acceptable range at different ages and gestations; and a single protocol to reduce blood pressure safely. Blood pressure should be incorporated into a single early warning score to alert clinicians to deterioration in children in hospital. Community care for patients with complex conditions or conditions requiring complex care must be properly planned, taking into account and specifying safety, effectiveness and patient experience. The presence of mental or physical disability must not be used to justify or excuse different standards of care. Commissioning of NHS services from private providers should not take for granted the existence of the same systems of clinical governance as are mandated for NHS providers. These must be specified explicitly. Communication between clinicians, particularly when care is handed over from one team or unit to another, must be clear, include all relevant facts and use unambiguous terms. Terms such as palliative care and terminal care may be misleading and should be avoided or clarified. Training in clinical error, reactions to error and responding with honesty, investigation and learning should become part of the core curriculum for clinicians. Although it is true that curricula are already crowded with essential technical and scientific knowledge, it cannot be the case that no room can be found for training in the third leading cause of death in western health systems. Clinical error, openly disclosed, investigated and learned from, must not be subject to blame. Conversely, there should be zero tolerance of cover up, deception and fabrication in any health care setting, not least in the aftermath of error. There should be a clear mechanism to hold individuals to account for giving false information or concealing information relating to public services, and for failing to assist investigations. The Public Authority (Accountability) Bill drawn up in the aftermath of the Hillsborough Independent Panel and Inquests sets out a commendable framework to put this in legislation. It should be re-examined. The existing haphazard system of generating clinical expert witnesses is not fit for purpose. It should be reviewed, taking onto account the clear need for transparent, formalised systems and clinical governance. Professional regulatory and criminal justice systems should contain an inbuilt ‘stop’ mechanism to be activated when an investigation reveals evidence of systematic or organisational failures and which will trigger an appropriate investigation into those wider systemic failures. Scrutiny of deaths should be robust enough to pick up instances of untoward death being passed off as expected. Despite changes to systems for child and adult deaths, concern remains that without independent review such cases may continue to occur. The introduction of medical examiners should be reviewed with a view to making them properly independent. Local health service complaints systems are currently subject to change as part of wider reform of public sector complaints. Implementation of a better system of responding to complaints must be done in such a way as to ensure the integration of complaints into NHS clinical governance as a valuable source of information on safety, effectiveness and patient experience. The approaches available to patients and families who have not been treated with openness and transparency are multiple and complex, and it is easy to embark inadvertently on a path that is ill-suited to deliver the answers that are being sought. There should be clear signposting to help families and the many organisations concerned. Ministerial Statement Patient Safety Learning's statement on the Dixon Inquiry report

Managing neuropenic sepsis My role as an acute oncology CNS is to improve cancer services. Part of my role is the treatment and management of neutropenic sepsis. Neutropenic sepsis is an oncological emergency following chemotherapy, whereby the patient’s immune system has been depleted by the treatment for their cancer. The body’s natural defense system has been wiped out from the cytotoxic drug, making the patient more susceptible to infections and, therefore, sepsis. The national standards for treatment of neutropenic sepsis are: Early warning symptoms: call the chemotherapy 24-hour hotline, manned during the day by the chemotherapy nurses and out of hours by the oncology ward nurses who are trained in giving advice to patients on chemotherapy. A high or low temperature is normally the worrying symptom. The UKONS 24 Hour Triage Tool: an algorithm used to support the nurses' advice. The patient is then advised to attend A&E or, if acutely unwell, call an ambulance. Once the patient arrives in the emergency department, the national standard 'door-to-needle time' is to receive antibiotics for suspected infection within 1 hour. How we improved cancer patient safety Monthly audits showed that for 65% of all patient's suspected to have neutropenic sepsis, none received appropriate treatment. This was usually because of contra-indicating admission i.e., came in with left flank pain, or poor triage. An alert card is given to every patient receiving cancer treatment for them to present to the emergency department, alerting everyone that the patient is receiving cytotoxic drugs and advice on how to manage this. The audits I performed highlighted that the patients who presented to the emergency department out of hours did not receive appropriate antibiotics in time. This correlated to no acute oncology nurse present. These findings led to us changing our practice to a nurse-led service. We asked the chemotherapy hotline to alert us to anyone they had advised to attend the emergency department. This allowed us to meet the patient at the front door, and to support and arrange for doctors and nursing staff to give the correct management in time, expediting and eliminating error. The errors I speak of were never incompetence; they were human error. One nurse to 20 unwell patients in the emergency department is unsafe. The emergency department is the frontline in all acute trusts. In the trenches, fantastically skilled but overworked and under-valued. This was noticed by the acute oncology team. I derived that we as a team needed to change our working hours. 10 hours days, 4 days a week. Excluding weekends, where the oncology registration would stand in for the acute oncology service. This worked on days where neutropenic sepsis admissions were many, but still did not support the out of hours admissions. Teaching and training were my next focus. I set up a trust-wide acute oncology conference where I invited all trust staff to attend, inviting guest speakers, experts in their field, to teach and train nurses, doctors, the receptionist, anyone who would meet a patient on cancer treatment. We trained emergency department nurses to be able to prescribe and administer the first dose of antibiotics to ensure the door-to-needle time less than 1 hour was adhered to. Training empowered the emergency staff. Training is investing not scolding. Following these changes, our monthly audit numbers went from 65% to 80–90% over the course of 3 months, which showed a huge success. However, then January came, ambulances queuing down the hill from the emergency department. 345 admissions with only two beds within the trust. 25 staff shortage. Door-to-needle times became 3 hour rather than 1 hour. Our team consisted of three CNS to cover the acute hospitals with emergency departments. 50 referrals a day predominately for new diagnosis of cancer. Door-to-needle times on audit were at an all-time low of 25%. The worst I had seen it. Look at the contributing factors: 25 staff nurses down, huge demand on admissions and beds, limited capacity to review patients. During this month, acute oncology CNS predominantly lived in the emergency department, prescribing and administering the antibiotics ourselves to ensure safe practice. This did not come at a cost to the rest of our service and ensured patient safety. It dramatically improved our door-to-needle times. Acute oncology CNS are a necessity and, I personally think, the unsung heroes of an acute trust. We can prevent hospital admissions and avoid delayed discharges, freeing up beds and supporting and advising doctors to investigate patients appropriately and safely. Why I love my role I enjoy my role. It is a rewarding role. I have had the privilege to meet and work with the most beautiful people in the most harrowing of times. The worst times. But it is worth it. Meeting someone who has been in pain and suffering for 3 months at home who has come into hospital because the pain had got to much. They are aware something is wrong but isn’t sure what. Breaking the bad news that this is a cancer and having the time and resources to support that patient and their family. Knowing I am making a difference. Even when the outcome is that this person is not fit enough for further investigations or would not be safe enough to have chemotherapy, but advising them that the main focus of care should be symptom management and palliative care to ensure quality of life. To feel that I have made a difference and, more importantly, to hear that I have. Ensuring patient safety through diagnosis to treatment and to the end of life care. Something we must not overlook the importance of. Although acute oncology CNS is not as well-known as critical outreach nurses or heart failure nurse specialists, it is equally important and necessary. A case study I would like to end this blog with a case study of a patient named Brendan*. Brendan was a 24-year-old man who presented with a 3-day history of right upper quadrant pain. Clinically jaundice. 10/10 pain. Unable to move. He had an ultrasound in the emergency department on Wednesday pm. He was referred to acute oncology in light of suspicious radiological diagnosis of cancer. Within 48 hours, acute oncology had reviewed him and broken the bad news to him that he had cancer. Cancer of unknown primary. The young man was discharged from hospital. We ensured a support service in system (given him our CNS number), managed his pain, arranged further investigations and discussed in a multidisciplinary meeting the best site for biopsy. We booked the biopsy and arranged a clinical appointment 1 week later with our acute oncology consultants. We called this young man every day for symptom reviews and holistic support for him and his family. He received chemotherapy within 3 weeks of diagnosis and is alive to this day, with a cancer that is rare and difficult to treat. Having only had six hospital admissions. This is why acute oncology are a necessity to any hospital and community service. *Name has been change to ensure confidentiality.

Following a review of the events that led up to Amy’s death Great Ormond Street Hospital have already made changes to practice: They have improved the way clinical information is shared between different specialist teams, to make sure staff have as comprehensive a picture as possible when making complex decisions about a patient’s treatment. They now use a single log-in electronic patient record system which means staff can quickly access clinical information about a patient and have the right information at the right time, rather than routinely having to use multiple systems. They have improved consultant availability. This means there is more consultant time for each patient being looked after in our paediatric intensive care unit. They have introduced a new process to make sure the care of patients, like Amy, who have both complex spinal and heart conditions is routinely considered by the hospital’s specialist joint cardiology committee.

In this report the CQC have seen much good and outstanding care, in particular around: responsiveness staff interactions with patients effective treatment leadership and engagement with staff and patients. However, there were a number of areas where services needed to make substantial improvements: governance clinical audit safety culture.

This issue (episode 2) focuses on: the most common safety issues associated with measuring patient weight steps to eliminate drug concentration confusion understanding Patient Care Analgesia (PCA) by proxy.