Empowering patients and families to escalate worries and concerns.

The NHS England pilot project at Gloucestershire Hospitals NHS Foundation Trust

In this week’s blog Debra Ritsperis Head of Quality @DRitsperis, Isolde Newbury ACRT @AcuteResponse, Rebecca Wood Paediatric Matron @becky_RWood, Kaylea Roffe Data Manager @roffe_kaylea, Natalie Tomms Communications Lead, Dr Kerry Gaskin @GaskinKerry, outline how the project team including Suzie Cro Deputy Director of Quality Programme Director Nursing and Midwifery Excellence GHFT @suz_cro, Andy Foo Intensive Care and Anaesthetics @AndyFoo7, Associate Professor Kerry Gaskin @GaskinKerry (involved April-Dec 2023) implemented the worries and concerns pilot project (April 2023-March 2024) across Gloucestershire Hospitals NHS Foundation Trust @GHFT_Excellence @gloshospitals


Introduction: The NHS England Worries and Concerns Project1 promises to be one of the greatest step changes in culture and patient safety since the introduction of the National Early Warning Scores (NEWS) by the Royal College of Physicians in 20122. This one year pilot project aims to see patients as equal partners in care3. To invite and listen to their views and to ensure that their concerns are heard and responded to appropriately. We acknowledge that healthcare is a highly complex process, and healthcare professionals are human and may adopt bias, according to their specialty or expected patient pathway or make errors or omissions in care, in the 24hour business of life. We acknowledge that patients and families are experts in their own wellbeing and may identify the subtle signs of deterioration and improvement before the vital signs of NEWS scores suggest any change4. In the community patients and carers escalate their clinical concerns freely, on admission to hospital, they may feel disempowered to raise concerns, particularly if they disagree with their healthcare team. Martha Mills’ story5 of a delayed response to developing sepsis, despite her parents repeatedly raising concerns adds weight to the NHS England Worries and Concerns project to positively ask patients and carers to raise their concerns.

Patients as Partners in Care: The project aims to invite patients and their families or carers to record their thoughts and concerns on their wellbeing in their clinical notes. The Paediatric Early Warning System (PEWS)6 has a parental question that asks if their child appears better, worse or the same as previously asked. Research evidence suggests by repeatedly asking parents and carers their thoughts and concerns, they feel much more empowered to raise them7. The adult questioning does not alter the NEWS score, but gives qualitative evidence of concern, along with nurse concern, to be considered with the NEWS score to detect and report early deterioration.

One challenge of seeing the patient as expert in their wellbeing is the perceived threat to the professional identity of the healthcare professional. It can feel uncomfortable experiencing patient and carer concerns when our perspectives are different. Acting on patient or family concern must be embraced as we realise, we are not experts in others wellbeing. Calling out poor behaviours of colleagues who do not actively listen to or create the environment to empower the patient and carer can be challenging. We must challenge our organisational barriers to communication, such as business, visiting times or telephone capacity.

The UK Patient Safety Commissioner8 is championing the value of listening to patients and amplifying their voice. Honouring Martha Mills, she recommends that all patients should have 24-hour access to a rapid review service, such as a critical care outreach team, should they have concerns about clinical deterioration.

Aim 1 of the project is to provide a 24-hour rapid response service for clinical deterioration on receipt of a patient or carer concern. Patient and carer escalation of concerns had been happening on an informal basis for those patients particularly at risk, for example step-down from critical care, patients with learning difficulty and those with fractured ribs. In preparation to widen participation to all acute adult in-patients the staff, patient and family information was tested and adapted in two acute clinical areas. The staff escalation process remained unchanged. The patient escalation was through a mobile telephone number to call or text. Capturing the learning of the pilot sites, the project was rolled out to all acute adult inpatient areas with a series of launch days. The paediatric department are piloting the normal systems of escalation through their clinical matrons during the day, Monday to Friday, which is successful could be piloted in neonates and maternity.

AIM 2 of the project is where patients and carers can record their concerns in the clinical notes and this has been established in the acute adult areas by an addition to the NEWS chart after  the NEWS score calculation  Stakeholder engagement and education has commenced on this new action and sustainment activities have been rolled out through our Basic Life Support training, News policy and clinical skills training for our healthcare assistants, Nursing associates and Registered Nurses. Business intelligence metrics have been set up to record the nurse and patient concern elements of the NEWS chart being recorded to identify areas of good practice and areas that need support.

Conclusion. 15 million people9 are admitted to hospital per year in the UK, and the rate of undetected deterioration is reported by NHS England as 0.03%. Therefore 5,000 patients per year may experience missed deterioration, one patient per week in every NHS hospital. If the Worries and Concerns project can be an additional tool to detect early deterioration10, this would provide a safety net for those 5,000 patients.

[1] Future NHS National Deterioration Forum. Available from:  https://future.nhs.uk/NEWS2CN/groupHome (accessed 16/2/24)

[2] Royal College of Physicians (2017) National Early Warning Score (NEWS) 2 Standardising the assessment of acute-illness severity in the NHS. Available from: https://www.rcplondon.ac.uk/file/8636/download (accessed 16/2/24)

[3] Vorwerk J, King L (2016) Consumer participation in early detection of the deteriorating patient and call activation to rapid response systems: a literature review. J Clin Nursing, 25: 38-52

[4] Mackintosh NJ, Davis RE, Easter A, Rayment-Jones H, Sevdalis N, Wilson S, et al. (2020) Interventions to increase patient and family involvement in escalation of care for acute life-threatening illness in community health and hospital settings (Review). Cochrane Database Syst Rev [Internet], 12: 1-76. Available from: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012829.pub2/epdf/full (accessed 16/2/24)

[5] Mills M (2023) Martha’s rule: a hospital escalation system to save patient’s lives. Available at Martha’s rule: a hospital escalation system to save patients’ lives | The BMJ (accessed 16/2/24)

[6] NHS England (2023) National paediatric early warning system. Available from https://www.england.nhs.uk/publication/national-pews-observation-and-escalation-charts/ (accessed 16/2/24)

[7] Salama M., Emms K., Hemesley A., Amber O., Jane H.V., Tracey V.-J., Duncan H. (2021) Incorporating parental concern as an integral escalation entity on a paediatric early warning system, Archives of Disease in Childhood. Conference: Royal College of Paediatrics and Child Health Conference, RCPCH Online. 106(SUPPL 1) (pp A361)

[8] Patient Safety Commissioner (nd) Listening to patients. Available at: https://www.patientsafetycommissioner.org.uk/our-work/strategy/ (accessed 16/2/24)

[9] NHS England (2023) Hospital Admitted Patient Care Activity. Available at: https://digital.nhs.uk/data-and-information/publications/statistical/hospital-admitted-patient-care-activity/2022-23  (accessed 16/2/24)

[10] NHS Improvement (2016) Patient Safety Alert: Resources to support safer care of the deteriorating patient (adults and children). Available at: https://www.england.nhs.uk/wp-content/uploads/2019/12/Patient_Safety_Alert_Stage_2_-_Deterioration_resources_July_2016_v2.pdf (accessed 16/2/24)


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