There are 1.7 million children and young people in England with long-term conditions such as asthma, diabetes and epilepsy. The NHS Long Term Plan sets out plans to reform community care for long-term conditions, leading to better care and a reduction in the pressure on emergency hospital services.
Data collected by NHS Digital as part of the Clinical Commissioning Group (CCG) Outcomes Indicator Set show that there has been a reduction in the number of children and young people with these 3 long term conditions who are admitted to hospital in an emergency. This gives an indication of how well the NHS is managing these conditions in the community.
Fewer children and young people with asthma, diabetes or epilepsy are being admitted to hospital in an emergency
The overall reduction in emergency admissions is good news but we are behind similar countries in important measures such as blood sugar control in children and young people with diabetes. There is also variation in emergency admission rates across England. While some of this variation is because of differences in prevalence, it still suggests that more could be done to manage these conditions in many parts of the country.
In 2018 to 2019, the rate of emergency admissions for children and young people with asthma, diabetes or epilepsy ranged from 39 per 100,000 to 612 per 100,000 people
To improve the quality of care for children and young people with long-term conditions, the NHS Long Term Plan commits to rolling out clinical networks which will share best clinical practice, support the integration of paediatric skills across services and carry out bespoke quality improvement projects. Our guidelines on asthma, guideline on diabetes and guideline on epilepsy recommend how these conditions should be managed to deliver quality care and improve health outcomes.
Of the 3 long-term conditions included in the CCG Outcomes Indicator Set emergency admissions data, asthma is by far the most common in children and young people with over 900,000 currently receiving treatment in England. However, we know little about how well our guidance on asthma is being put into practice.
81% of children and young people aged 6 to 18 had their inhaler technique checked before being discharged
The Royal College of Physicians carried out an Asthma Audit Development Project in 2017. This sampled around 400 records of children and young people admitted to hospital with asthma. The project found that 71% of children aged 1 to 5 and 81% of those aged 6 to 18 had their inhaler technique checked before being discharged, as recommended by NICE. This ensures they can control their asthma to help prevent further emergency admissions.
This development project informed the new National Asthma and COPD Audit Programme which is expected to publish its first report later in 2020, giving us more information about the care of children and young people with asthma.
More children and young people with type 1 diabetes are having NICE-recommended health checks. Regular monitoring of blood glucose control and potential diabetic complications are important to help children and young people manage their condition well to prevent emergency hospital admission.
Information about the delivery of these health checks is collected by the Royal College of Paediatrics and Child Health in the National Paediatric Diabetes Audit. This audit looks at the care of children and young people with diabetes up to the age of 24. While this data collection includes children and young people with type 2 diabetes, only a handful of paediatric diabetes units have a caseload of 10% or more children and young people with type 2 diabetes, therefore we have focussed on children and young people with type 1 diabetes.
The audit found that the proportion of children and young people who had their average blood sugar level (HbA1c) regularly measured has increased in recent years. We recommend that children and young people with type 1 diabetes have this check at least 4 times a year. While almost everyone eligible has this check at least once, in 2017/18 only 55% were monitored as often as we recommend.
In 2017/18, 55% of children and young people had their blood sugar level monitored as often as we recommend
Other checks we recommend help identify complications or related conditions so these can be treated and managed. More children and young people are having these checks but there’s regional variation in how well they are carried out. For example, foot examination rates have increased overall but range from 71% in London and the South East to 88% in the East Midlands.
More children and young people with type 1 diabetes are receiving NICE recommended checks
The Royal College of Paediatrics and Child Health captures information about the organisation of epilepsy services for children and young people in its Epilepsy12 National Audit. We have made recommendations on how care should be delivered, and the audit tells us how well these have been put into practice.
In 2018, the audit found that 79% of trusts in England with a paediatric epilepsy service routinely undertook comprehensive care planning. Our quality standard on epilepsy in children and young people identifies this as a priority area for improvement because it’s important to consider and address all aspects of a person’s life that could be affected by their epilepsy and the treatment they are receiving.
The audit also looked at staffing. It found that 95% of trusts with a paediatric epilepsy service employed at least 1 paediatric consultant with expertise in epilepsy. This is important because we recommend that diagnosis should be established by a specialist paediatrician with training and expertise in epilepsy.
However, fewer trusts (77%) employed at least 1 epilepsy specialist nurse. Epilepsy specialist nurses play a key role in providing information, care and support. That’s why making sure that children and young people are seen by an epilepsy specialist nurse, who they can contact between scheduled reviews, is also identified as a priority for improvement in our quality standard.
My nurse, Kat, is amazing. Apart from being very funny and always cheery, she knows lots and is able to explain stuff in a way I get! She talks to me rather than the adults and makes sure that I understand what’s going on.
Without Kat I think I would be pretty terrified and that probably goes for the rest of my family too. She helps us feel normal about epilepsy and gives us tips and advice on “living” rather than just fretting about my diagnosis. My epilepsy nurse rocks!
The NHS Long Term Plan identified young people’s mental health services as an area of longstanding unmet need. As well as leading to poorer outcomes for young people with mental health problems, difficulties accessing mental health services can also increase pressure on emergency services. For example, Public Health England reports that there were nearly 27,000 emergency admissions due to self-harm in 10 to 19 year olds in 2017/18.
In recent years, the number of children and young people accessing community mental health services has increased, from nearly 325,000 in 2017/18 to nearly 380,000 in 2018/19. NHS England estimates that this is around 36% of all children and young people with a diagnosable mental health condition. We wrote about proposals to further expand community services for children and young people with mental health conditions in our NICEimpact mental health report.
Improving mental healthcare
Many people with long-term physical health conditions also have mental health problems. These can lead to significantly poorer health outcomes and reduced quality of life. For example, the National Paediatric Diabetes Audit found that 28% of children and young people with type 1 diabetes who had psychological screening as we recommend were identified as needing additional support. Those who needed support had poorer blood sugar control.
One approach to transforming mental healthcare for children and young people with long-term conditions has been evaluated by Great Ormond Street Hospital for Children and described in a shared learning example. The hospital set up a drop in psychological wellbeing centre, offering NICE recommended psychological therapies and, where appropriate, referrals to paediatric psychology services. Most children and young people who self-referred met the clinical threshold for common mental health problems. Previously they had received limited support for these common mental health conditions.