What our members said…
We asked 295 members: “In 2040, what is the top thing you want to be different about the delivery of paediatric care?” The top themes were moving care out of hospitals, staffing, and using technology to strengthen IT systems.
What our dedicated models of care research says…
In the future, we think that the underpinning philosophy should be that all paediatric models of care are child centred. Evidence points towards a whole population approach, and our group have highlighted six broad patient segments which can be used to inform the patient pathway. Service themes (such as safeguarding, mental health care, transition) cut across all of these segments.
The healthy child needs to stay well – both in terms of their mental and physical health. Across the UK, we need a clear agenda to ensure the welfare of children is a part of central and local government plans – alongside a clear focus on families in order to reduce inequalities and the proportion of children living in poverty. Early years intervention concentrating on the first 1000 days of life from conception through to two years is a critical time to prevent physical or psychological harm from developing as well as reducing exposure to adverse childhood experiences that can impact on long term health attainment. Education is central to improving life chances, and ill children too often experience a reduction in educational opportunities. Hence horizontal integration between health services, local government (social services) and education is needed to provide and maximise opportunities for all children.
The last decade has seen a dramatic increase in referrals to child development centres or child and adolescent mental health services (CAMHS) when there are concerns regarding social communication disorders, such as autism (ASD) in children, behavioural issues and attention deficient hyperactivity disorder (ADHD). Throughout the United Kingdom the services offered for community, neurodisability and CAMHS differ depending upon place, which means it is difficult to generalise on appropriate models of care. However, the pathways for these children are complex, often involving social services and education as well as medical provision.
The failure to provide timely and effective services increases the vulnerability of these children, resulting in increased risk of harm especially to their mental health and resulting risk of self-harm and suicide. Their social vulnerability is evident in multiple environments and pathways that ensue. Timely diagnosis and intervention are needed to ensure educational attainment is achieved, alongside a reduction in social vulnerability and improved mental health. There is evidence that integration of services with a multidisciplinary team-based approach – where competencies are more important than role definition – results in a timely cost-effective service provision with improved health outcomes.
Child with a single long term condition
The number of children with a single chronic long-term health problem has increased significantly over the last two decades, with asthma, diabetes, inflammatory bowel disease, eczema and epilepsy contributing. The escalation and clinical pathways for asthma and many other long term chronic health problems are diverse across the four nations, some of which may depend upon services available, however there is far too much unwarranted clinical variation which is in part also due to non-adherence to clinical guidelines.
A number of new care models have developed to reduce clinical variation for single chronic health problems to ensure the child is seen in the right place at the right time by the right professional. The intended benefits include improved health outcomes (including reduced morbidity and improved quality of life) and reduced use of unscheduled and scheduled care through promoting a proactive management strategy rather than a predominantly reactive approach.
Child with complex health needs
There is a significant knowledge gap relating to incomplete and imprecise definitions of children with medical complexity (CMC) and although CMC account for a small proportion of children they account for a significant proportion of health care resources. There are principles that all services need to incorporate to be effective in supporting CMC, including care mapping, care co-ordination, responsive care, ethical/moral imperative, and communication.
To help understand and deliver the most effective and efficient health care services, we need to be able to differentiate the needs of the children. Clinical coding is a way of understating the complexity of patients consistently across all health care settings
We need to be clear that any new model of care for children with long term health problems is an ‘enhanced care model’ that will improve quality of life and include experience measures for families, patients and health care professionals.
Acutely mild to moderately unwell child
There has been an unprecedented increase in emergency department attends in the last 15 years. Integrated care systems are tasked with reducing unwarranted clinical variation in quality and access to services with vertical integration between those organisations outside of hospital such as primary care into secondary care.
A practical approach is to look at patient flow across a system and produce solutions that engage across places and embed change to resolve the following:
- Increasing demand for primary and secondary care which is unsustainable
- Unnecessary access to primary and secondary care
- Uncoordinated care between healthcare settings
- Confused patient (and parent/carer) knowledge about when and how to access appropriate services
Acutely severely unwell child
Infants and children who are acutely critically unwell require urgent recognition that their symptoms and signs are potentially life threatening and immediate treatment is required. This means parents and carers having the information to recognise how unwell their child is, knowing something needs to be done, and having the health services available to meet their needs. The health literacy of parents and availability of information for families is crucial in meeting these needs. Primary care staff similarly need to recognise an ill child and have the skills and tools to enable the necessary action. Not all children who present are physically unwell, with mental health problems in children increasing in number and severity.
The landscape of urgent and emergency care provision for children has changed significantly in recent years and continues to evolve at pace, albeit with much complexity and variation across the UK. This has been further exacerbated by COVID-19. As a result of this, paediatric staff are now looking to work in an integrated way with NHS 111 and primary care to maintain less attends whilst ensuring good clear advice is given to help support management.
Key components of any paediatric service
We have also highlighted what we think are the key components of any paediatric service, regardless of complexity. We encourage local teams to use this list when implementing paediatric services:
- Functional vs dysfunctional team
- Multidisciplinary approach
- Patient centred care
- Child and family engagement
- QI activity
This is in addition of course to fully integrated care, which we hope will be implemented in all aspects of paediatric care and services by 2040.
Top three messages
The way we deliver paediatric care isn’t sustainable and needs to change. Integration and working across the system have long been demonstrated to improve patient experience and health outcomes.
In the future we want to see a whole population approach to care that focuses on symptoms and takes a holistic approach to prioritise the needs and complexities of each individual patient and their family.
Fundamentally, we need to simplify the system, try to keep care as close to home as possible and communicate any change well, concentrating especially on hard to reach populations.