The Key issues facing Children and Young people in the UK

Claire Lemer has a bespoke role as a Consultant in General Paediatrics and Service Transformation at the Evelina London Children’s. Sadly, she was also involved in a road traffic accident late last year, and has reflected on this patient experience of navigating the NHS. Consequently, Claire has a truly unique experience and understanding of the NHS.

At our recent Health Foundation hosted Running Horse Group meeting Claire gave a brilliant overview of the key issues currently facing paediatrics, managing to bridge shop floor clinical issues with ‘big-picture’ strategic challenges. It’s easy to forget to stop and take stock of the current status quo and Claire clearly articulated a number of key issues

The narrative around children and young people

There’s been a huge drive to link up adult health and social care. Despite significant funding, many believe even more investment is needed. Yet the pathways for children and young people (CYP) are equally as bad, if not worse compared to adult services. Efforts to fund a joined-up health and social care service for CYP must be given higher priority.

This seems obvious to those working in the ‘front line’ of child health, but the difficulty is how we go about achieving it. The first step will involve ‘selling’ the need for integrated health and social care, and this requires us using the correct narrative. CYP are forever being forgotten when it comes to policy and funding decisions, and we need to be clear about how we develop the correct framing around their needs in health and social care. We’ve already mooted proposals using the ‘moral’ need, the ‘quality’ perspective, and even backed this all up with economic evidence. Yet still we struggle to get CYP on the policy table. It’s time to examine exactly why this is, and start thinking outside of the box as to how we present CYP in future strategic health care decisions. This involves directly speaking to CYP themselves, something which all parties have been woefully poor at doing until the last couple of years.

Empowering young people

Claire described an interesting healthcare analogy using a well known coffee shop as an example of how consumers are actively involved in the service process. The barista hands you a coffee and points you to the sugar, milk and napkins. By creating a system where the customer does more, the barista can do less, and customers are served faster. Overall the service is more efficient.

So what could we learn from this Starbucks model, and how could we deliver something similar for young people, especially those with long-term conditions? This is not glib business translation as young persons persistently say that want to be more involved and engaged in their own care. It’s important that we design our services in a way that empowers young people, offers them more choice over their care, and promotes health-protecting behaviours as they transition to adult care. We may think we do this, but we probably don’t do it as well as we think we do.

Using information technology

Health care for CYP could be doing much more to embed information technology into its services. We need to be clear about how this will happen and how we can ensure it promotes integrated, more efficient care. The Red Book for example, will soon become digital. But have we considered who will hold it? Will this be the parent/carer or the child? We need discussions exploring the age at which a CYP starts to take control over their own health records, and how we can best promote this assumption of responsibility within our health care service.

Secondly, we’re far too linear in our thoughts about information technology. We need to be more radical in how we embrace it, ensuring we have CYP input from the start. By designing the right systems, we are much more likely to get widespread uptake and better engagement of CYP with their health.

Structured change

With the recent merger of NHS Improvement and NHS England, regional level stakeholders are key to addressing CYP’s presence on local agendas. But how does this play out in terms of CYP services within sustainability and transformation partnerships (STPs)? To what extent are CYP issues addressed in STPs and the new Integrated Care Systems (ICSs)? What has promoted or hindered this work locally?

With integrated care comes assessment and analysis of impact. At present, there’s very little work assessing the impact of integrated care on children’s services. There are huge learning opportunities here, not only to support the faster spread of successful integration to other regions, but also to understand what’s working to address the inequities within CYP care, and what is not.


It’s a complicated and sensitive issue, but we are long overdue a review of where the UK stands ethically with regards to palliative conditions for CYP. With recent high-profile cases fresh in our minds, it’s important to assess not only the impact on CYP and their families, but also the effect on staff. Continuing with the current position is likely create significant moral pressures on the future workforce, detrimental to the care we provide for CYP.

The challenge of addressing these issues discussed above hinges on the fact that we lack an overall framework for CYP. There are multiple organisations advocating on behalf of children, but we don’t speak as a united voice, nor operate under a unified umbrella organisation. We need to identify key strategic areas that can be targeted to achieve political traction, and build upon this.

We considered Claire’s insights in group discussions and this led to a mapping of the key issues that the RHG felt were facing paediatric care in the UK. The honeycomb model below has attempted to cluster the issues into some key topics.

RHG Outcomes 250518

The rest of the afternoon developed on the learning from this session. After hearing about projects from RHG members, it was clear that there are key issues that we have focussed our efforts on; namely staffing and morale, and models of care.

It’s interesting to think about why these two areas have received so much input by RHG members. One idea is it we feel able to proactively address these issues locally as front-line clinicians. Alternatively, it could it be that as these problems culminate, the pressure points on children’s services present themselves as the failure of the current model of care and poor staff retention. This has pushed us into a corner as a service, leaving us with no other option than to try and redesign services ourselves and use novel staff retention strategies.

Moving forward, it’s important to keep the big picture of paediatric services in mind whilst recognising that we might not be able to address many of these issues either ourselves or with our local teams. But for those areas that we are trying to improve, the RHG network is a suitable place to better share successes, and study challenges, identified in our own projects.


Thanks to Susannah Pye for sharing her thoughts in this blog. 

The RHG will be morphing shortly into a new organisation (but keeping our unique name) – look out for further details…!