Setting the standard for care of children and young people with long-term conditions

Children can find health services hard to access, but a new set of standards aims to change that

Children can find health services hard to access, but a new set of standards aims to change that

Picture: iStock

When it comes to providing integrated and preventive care to people with long-term conditions, the focus is often on older people. However, a new set of standards, produced jointly by five royal colleges, including the RCN, says children and young people are just as deserving of coordinated and joined-up care.

Nearly one quarter of 11 to 15 year olds in England have a long-term illness or disability, with asthma, epilepsy and diabetes among the most common. But the report, Facing the Future: Standards for Children with Ongoing Health Needs, says all too often that children find health services confusing, difficult to access and hard to obtain information from. 

The 11 steps

The report warns this is having a negative impact on their health and well-being. It points to another piece of research published by the Royal College of Paediatrics and Child Health (RCPCH), the State of Child Health report, showing the UK has fallen behind other wealthy European countries on key measures, including mortality among children with ongoing health needs.


key standards set out by the royal colleges

Royal College of Paediatrics and Child Health (2018a)

To help, the colleges have produced a set of 11 steps that they want the NHS to adhere to. These follow on from previous standards set out for hospital and unscheduled care in 2015.

The 11 standards request:

  • Referrals to children’s services are responded to within five days either by arranging an appointment or seeking other advice or information to proceed with care.
  • A single point of contact – such as a consultant paediatrician or clinical nurse specialist – to be available to provide advice to parents or community staff within three working days.
  • Information services be made available to answer queries from parents about appointments, referrals and test results.
  • Paediatricians to have 24/7 access for urgent advice from a range of specialities, from cardiology to respiratory experts.
  • Children’s services to ensure non-urgent clinical communication is sent to a child’s GP practice or referring clinician within five working days. Where a child’s condition is unpredictable this must be done within one day. Having the right knowledge and skills to provide quality care to this vulnerable group is essential. 
  • A dedicated person appointed to handle transitional care arrangements starting in adolescence and running up to the age of 25.
  • An electronic shared healthcare record be available to all health professionals assessing or treating the child in any setting.
  • Staff to have the necessary skills to support the psychological needs of children and have mental health services available that they can refer to.
  • A dedicated lead for children to be appointed at executive or board level of every trust. Nursing director recommended as one of the options for this role.
  • Service planners to ensure child health services are co-designed, planned and evaluated with the involvement of children and their parents/carers.
  • A system in place to monitor, review and improve the effectiveness and integration of local child health services.

Challenges to implementation

RCPCH president Neena Modi says the standards are ‘much needed’. ‘Children’s health needs are becoming more complex and these standards provide guidance to drive improvements in communication, collaboration and continuity across care pathways,’ she says.

Having the right knowledge and skills to provide quality care to this vulnerable group is essential

Marie-Therese Massey

Professor Modi adds that all those from front-line staff to commissioners and service planners must now work together to ensure the standards are achieved.

But how achievable is that? The document itself acknowledges there will be several challenges, citing ‘fragmented and disjointed’ systems which create ‘boundary disputes’ over who is responsible for what parts of care. It also highlights a ‘major concern’ about the state of child and adolescent mental health services (CAMHS). 

1 in 4 

children aged 11 to 15 have a long-term illness or disability

RCN general practice nursing forum member Marie-Therese Massey agrees this a huge issue. ‘The provision of CAMHS is patchy and referrals are often associated with long delays,’ she says. Ms Massey says that as a result the burden of supporting patients who need help with mental health problems often falls on nurses in the community. But she says the workforce needs more training and education to cope with this and reduce the numbers who end up having a ‘mental health crisis’.

‘Having the right knowledge and skills to provide quality care to this vulnerable group is essential to prevent a deterioration in their mental health, including self-harm and admission to acute services,’ she adds.

Staffing issues

Meanwhile, RCN professional lead for children and young people’s nursing Fiona Smith believes staffing could be a barrier too. A recent report by the House of Commons’ health committee found significant vacancy rates with 11% of general children’s posts, 16% of learning disability posts and 14% of mental health posts all unfilled.

‘If we are to ensure that children and young people experience high-quality healthcare, service providers must work together throughout their care journey and ensure we have the right number of children’s nurses to provide safe care,’ Ms Smith adds.

Benefits of a dedicated phone advice service

In Norfolk a dedicated children and young people’s health service phone number has been set up.

Just One Number offers advice and information to children and their families and health professionals. It is staffed by experienced health visitors and school nurses. The aim is to promote the self-management of conditions. It also allows callers to book or change community appointments.

The service, run by the Norfolk Healthy Child Programme team, is open Monday to Friday, 8am to 6pm, and on Saturdays, from 9am to 1pm. Call handlers answer calls and manage the administration, passing callers on to clinicians if required. An email service is also provided, promising responses within an hour during opening hours. Voicemails left out of hours are prioritised within the first hour of opening.

Every contact is recorded on an electronic child health record system, which can be accessed by services across the county. The service was launched a year ago and is already getting 4,000 calls a month. The average wait time is just two minutes. 

Evaluation shows that 90% of children and parents using the service would recommend it and 80% of contacts are managed with one single call, without the need to refer elsewhere.


Providing mental health support

The cystic fibrosis team at the Royal Hospital for Children in Glasgow has access to a range of mental health and psychosocial staff for patients from the point of diagnosis. A paediatric psychologist is available to deliver psychological therapies to families, as well as consultation and teaching to child health staff. 

The team also has a dedicated social worker, a play specialist and access to a multidisciplinary paediatric liaison mental health team for children and young people.

Meanwhile, the intensive care unit (ICU) at St George’s Hospital in London has access to a multidisciplinary mental health service. It was set up in response to research showing that about a third of children who are admitted to the ICU and their parents show symptoms of post-traumatic stress disorder. 


Nick Evans is a freelance health writer

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