Meet Margaret and Rachel
Told by her daughter Rachel, Margaret's story spans the breadth of primary, secondary and, community healthcare and social care. It powerfully illustrates how the current challenges facing health and social care affect people's lives.
There are currently thousands of people like Margaret. In Margaret's case living with frailty, but this could be anyone across England with an unmet health or social care need.
Margaret's story
The impact
The health and social care system in England is currently facing severe challenges and this meant it did not deliver for Margaret.
People's healthcare needs should determine the care that they receive, not system pressures. It is also vital to help people stay well and independent for as long as possible. As Margaret's story sadly shows, people can experience significant anxiety and harm if they are not cared for by the right team, in the right place, at the right time.
Many exceptional people cared for Margaret, including frontline clinicians and care workers. But, a more personalised and joined-up care plan may have enabled her to stay well at home for longer.
PEOPLE FIRST and Margaret
The aim of the solutions in this resource is to help address the serious challenges faced by Margaret, her family, and those who provide care.
Access to timely, preventative care could have helped Margaret. Local services could have provided routine assessments and interventions if they were able to recognise her needs sooner. With support in place, Margaret could have stayed safe and well at home for longer.
Margaret could also have benefited from optimised care pathways. Her journey reflects an absence of joined-up care provision. Lack of access to care in her own home led finally to hospital admission.
Margaret experienced difficult and stressful waits in the ambulance and the emergency department. It is crucial that the right senior clinical decision maker sees people to assess their needs. This ensures the best clinical triage at the first opportunity.
An urgent community response team visit may have prevented Margaret from being admitted to hospital. They could have managed her head injury at home and decided what further support she needed.
When Margaret was admitted to hospital, staff should have treated her delayed discharge as a potential harm event. She could have benefited from frailty team provision and a Home First approach to her care.
Instead, like many older people, Margaret's health and wellbeing deteriorated in hospital. This meant ultimately, it was no longer safe for her to return home.
Margaret's story also echoes the experience of millions across the country who struggle to access dental care. Without timely treatment, a person's needs can escalate quickly, resulting in pain and loss of dignity.
Flow is crucial if integrated care systems are to be successful. Margaret's health needs brought her into contact with multiple care providers and systems. Artificial barriers between services and long waiting lists in parts of the system make it difficult for people to be transferred easily between services.
Risk sharing can also make a difference. Margaret spent lots of time in care settings that were not best suited to her healthcare needs. This inevitably led to an increased risk of harm. People should receive care in the right environment for their healthcare needs, regardless of service demand. The new integrated care systems will make it easier to monitor risks across pathways and take action to mitigate the effects of excess demand for services.
Her story shows the pressing need for effective, compassionate joined-up care. Collaborative leadership is essential to make this work. Cross-system, multi-professional leadership will help improve safety, quality of care and people's experiences.
A lack of shared data and information complicated Margaret's journey. Shared GP records would have enabled staff across many services to see Margaret's medical history. It encourages consistency of care and means essential information is not missed. Communication between services and people is also improved, reducing frustration and reassuring people and their families.
Significant transformation of the health and social care sector is needed to improve everyone's safety and quality of care. The difficulties Margaret and her family faced show clearly the cost of inaction.
Despite the current challenges, there are positive examples of innovation and change. PEOPLE FIRST aims to share this learning with colleagues across health and care. Its authors hope, much like Margaret and Rachel, that sharing their experience and knowledge will improve care for everyone.
We encourage fellow system leaders to share this story with colleagues, as part of operational and strategic discussions. Ask your teams "would this change make a difference to Margaret and her family?"