Improving communication, collaboration and continuity of care would ensure that children are seen in the right place by the right person at the right time. By Carol Ewing

Child in hospital

Science has come a long way over the last decade which means children with ongoing health needs are living longer. This, along with a growth in population, has led to more people needing to use the health service, often with multiple conditions and for a prolonged period of time.

As children’s needs are becoming more complex, the need for excellent communication, collaboration, and continuity of care across organisational boundaries has never been more important. However, the health service is currently swimming against the tide as resources are not able to keep up with demand and the means to connect an already complex system.

Children have a right to be involved in the decisions that affect their care

”Facing the Future: standards for children with ongoing health needs” is a new set of intercollegiate standards for service planners which aim to help improve connections within a currently disjointed system. They aim to improve communication, collaboration and continuity of care and ensure prompt and correct diagnosis so that children are seen in the right place by the right person at the right time.

The standards, which have been produced in partnership with children and between the Royal College of Paediatrics and Child Health, Royal College of Physicians, Royal College of General Practitioners, Royal College of Nursing and Royal College of Psychiatrists will ensure that child health services are proactive and planned; that children are represented at executive level and are involved in designing and evaluating care so that services are built around their needs.

Poor communication

Poor communication often leads to poor patient experience. Children with ongoing health needs have told us that accessing information relating to their diagnosis and for the management of their condition is troubling. That’s why it is vital service planners ensure families and healthcare professionals have a single point of contact within the health system to streamline each patient’s care. To compliment this, all healthcare professionals must have timely access to a child’s medical record.

The largely fragmented and disjointed arrangement of services prevents overall clarity over who should be responsible for providing services in some areas and this can hinder communication. It can also result in decisions about a child’s care being made without the input from the child and their family.

These standards put children and their families at the very heart of their healthcare and by adopting them, provide our young patients with the reassurance that the NHS works together with patients in order to achieve the best possible outcome.

Involving children and young people

Children have a right to be involved in the decisions that affect their care and whilst the update to the Health and Social Care Act in 2012 in England placed a duty on NHS trusts in England to include the views of patients within decision that affect their care or treatment, there is limited evidence that this has been embedded across the UK.

Involvement from children in the redesign of Glasgow Children’s Hospital is an example where children can influence decisions that will ultimately provide a better service suited to their needs. We want to ensure this involvement is embedded at the very core of decision making by having a dedicated lead for children and young people at board or executive level.

Recurrent readmissions

Recurrent readmissions for children with chronic health needs are having an impact on the total emergency admission rates. This adds to the inconsistencies in how children should be managing their condition, causing pressure to mount on services.

Asthma, the most common long term medical condition in UK, has one of the highest prevalence, emergency admission and death rate for childhood asthma in Europe and is the most preventable hospital admission.

Providing care closer to home for children with ongoing health needs is absolutely the right way forward but most services across the UK cannot provide this integrated model of care. Children with ongoing health needs are more likely to experience mental health difficulty, prior to and after they’ve received their diagnosis.

An independent review commissioned by the government found that more than 300,000 people suffering from long term mental health problems lose their jobs each year, costing the UK economy between £74bn and £99bn

If they experience a mental health crisis, they often present at the emergency department in the first instance, which is neither appropriate or well linked with liaison psychiatry services. For those who are lucky enough to get help, children are often likely to have to travel hundreds of miles from home to get it.

As with any health condition, the best way to support a child’s needs is through early intervention. In 2017, an independent review commissioned by the government found that more than 300,000 people suffering from long term mental health problems lose their jobs each year, costing the UK economy between £74bn and £99bn.

Service planners must ensure that their systems are in place to monitor, review and improve the effectiveness and integration of local child and young peoples’ health services by adopting these standards without delay. Championing the needs of children at strategic, decision making level will ensure that health services for children are prioritised and given the same parity as those provided to adults.

They will help relieve the swell on the health service, enabling the workforce to stop swimming against the tide and offer the highest quality of care to children with ongoing health needs they so rightly deserve.