New JSNA: This is the test site for the new Joint Strategic Needs Assessment

Long Term Conditions in Children & Young People

Introduction

A long-term condition is defined as one for which there is no cure but which can be controlled by medication and/or other treatments and/or therapies. They therefore require ongoing management over a period of years. About one in seven young people (15%) aged 11-15 in the UK report having been diagnosed with a long term medical condition.

Common long-term conditions in childhood include: Diabetes, Asthma, Epilepsy, Eczema, Severe allergies/anaphylaxis, cancer, physical or mental impairment. This section will focuses principally on, "insulin-dependent diabetes, asthma and epilepsy".

Diabetes

Insulin-dependent diabetes mellitus (IDDM), commonly referred to as type-I diabetes, is a condition caused when an autoimmune response induces the death of insulin-secreting b-cells in the pancreas.  When b-cells are destroyed, the body becomes incapable of producing insulin; therefore, glucose levels in the blood are unable to be controlled, leading to hyperglycaemia, or high blood glucose level.  Long-term complications of hyperglycaemia include cardiovascular, kidney, and eye diseases, as well as various nervous system disorders. 

Asthma

Asthma is a chronic lung disease that inflames and narrows the airways, causing recurring periods of wheezing, chest tightness, shortness of breath, and coughing, with the coughing often occurring at night or early in the morning.

This narrowing or inflammation is caused when certain natural chemicals within the body are released, usually in response to infection or when the patient comes into contact with an asthma trigger.

Symptoms can range from mild to severe. Treatment generally works well to ease and prevent symptoms, usually with inhalers. A typical person with asthma may take a preventer inhaler every day (to prevent symptoms developing), and use a reliever inhaler as and when required (if symptoms flare up).

Epilepsy

Epilepsy is the tendency to have recurring seizures that start in the brain. The brain uses electrical signals to pass messages between brain cells. If these signals are disrupted, this can lead to a seizure. The fact that seizures can reoccur is key, as a one off seizure does not mean it is epilepsy.

Getting a diagnosis of epilepsy can often take some time. Only until there have been two or more seizures that a diagnosis of epilepsy will be considered, unless there is an obvious known cause. There is no test for epilepsy and diagnosis is almost entirely dependent on medical history, although this can be possible with an accurate eye witness account. Usually an initial medical examination will take place and the results of any further investigations will also take into account eyewitnesses reports. 

Facts, figures and Trends

There has been little change in the rate of emergency admissions for asthma, diabetes and epilepsy in under 19s in Reading since 2011/2012. Although there has been greater fluctuation in the national rate, the two rates have remained similar in that time. 

Figure 1. Emergency hospital admissions for asthma, diabetes and epilepsy in under 19s 2003/4 - 2014/15 in Reading

Figure 1
Figure 1

Source: NHS Digital Indicator Portal 

By applying estimates of rates of national prevalence to local population estimates, it is possible to make a prediction of the number of children and young people in the local area who are likely to have each condition. This calculation does not take account of factors associated with socio-economic conditions that may have an impact on prevalence (such as the effect of prevalence of smoking on asthma diagnoses, for example, or the prevalence of obesity in children for Type 2 diabetes). Using these estimates, Reading is likely to have around:

  • 2966 children under the age of 16 with asthma, 
  • between 71 and 88 children under the age of 19 with diabetes, and 
  • 136 children under the age of 16 with epilepsy 

One of the NHS Outcome Framework Indicators measures potentially avoidable emergency hospital admission for asthma, diabetes, and epilepsy in under-19 year olds. During 2014/15, 55 children from North & West Reading CCG and 91 children from South Reading CCG were admitted for these conditions (figure 2). The rate in South Reading CCG is very similar to the national average, while the number in North and West Reading CCG is lower. 

Figure 2. Avoidable emergency hospital admissions for asthma, diabetes and epilepsy in under-19s 2013/2014 in Berkshire CCGs

Figure 2
Figure 2

Source: Health and Social Care Information Centre indicator portal, 2015.

Asthma 

Asthma is the most common long-term health condition.1.1 million children (one in 11) in the UK have been diagnosed with asthma and are currently receiving treatment and a child in the UK is admitted to hospital every 20 minutes because of an asthma attack (Asthma UK). In 2014/15 there were 23,433 emergency admissions of children aged under 16 with asthma to hospitals in the UK, a rate of 222.74 per 100,000. The rate for Reading was slightly lower at 190.51 per 100,000 (66 admissions), although the difference is too small to be considered statistically robust (Health and Social Care Information Centre, 2016). 

Diabetes

There are an estimated 31,500 children and young people under the age of 19 with diabetes in the UK, of whom around 95.1% have Type 1. A 2009 survey by the Royal College of Paediatrics and Child Health found a slightly higher of boys were diagnosed than girls (51.1% were male) and the greatest number of children diagnosed with diabetes were aged 10-14 years. (77% of all children with Type 1 diabetes were in this age group and 98% of those with Type 2). The peak age for diagnosis for Type 1 diabetes is between 9 and 14 years of age (Diabetes UK, 2015; Royal College of Paediatrics and Child Health, 2009). 

Epilepsy

The total number of children under 5 years old with epilepsy is approximately one in 509, increasing to one in 240 for all children aged under 16 years, and one in 220 for those aged under 18 years (Young Epilepsy)
 

National & Local Strategies (Current best practices)

In the statutory guidance Supporting pupils at school with medical conditions, the  Department for Education sets out guidance for schools, Local Authorities, CCGs, NHS bodies, pupils, parents and carers on how to provide the best support to pupils with long term health conditions. 

What are the key Inequalities?

Most individual long term conditions in the whole population (including adults) are more common in people from lower socio-economic groups (Kings Fund) and several studies have argued that there appears to be a socio-economic gradient in the prevalence of long term conditions in childhood.

Access to appropriate health care and support for children with long term conditions can help to ensure that they are able to manage their condition well, reducing ill health and any further deterioration or secondary conditions, that their health does not impact on their school attendance or any other aspect of their education, and that they are able to take advantages of the same opportunities as their peers.  

 

What is this telling us?

Most individual long term conditions in the whole population (including adults) are more common in people from lower socio-economic groups (Kings Fund) and several studies have argued that there appears to be a socio-economic gradient in the prevalence of long term conditions in childhood.

Access to appropriate health care and support for children with long term conditions can help to ensure that they are able to manage their condition well, reducing ill health and any further deterioration or secondary conditions, that their health does not impact on their school attendance or any other aspect of their education, and that they are able to take advantages of the same opportunities as their peers.  

What is this telling us?

There are likely to be at least 3,000 children in Reading who have been diagnosed with a long term condition and there were around 135 emergency admissions to hospital of children with long term conditions in Reading during 2015 (based on a rate of 329 per 100,000 and a population of around 41,000). Prevalence and rates of hospital admission are largely similar to the national average, although rates of admissions in the North and West Reading CCG area are lower than the average. Most of these are accounted for by asthma. 

What are the unmet needs / service gaps?

According to Diabetes UK, only six per cent of children and young people, whose checks are being recorded, are getting all of the recommended diabetes care, services and support they are entitled to. It is therefore not surprising that over 85 per cent of children and young people over the age of 12 have blood glucose levels higher than the recommended targets. Furthermore, only 16 per cent of children and young people with diabetes in England and Wales achieve targets in relation to controlling their condition, putting them at increased risk of developing diabetes-related complications later in life.  

Despite the availability of evidence-based guidelines for the management of paediatric and adult asthma, there remains a significant gap between accepted best practices for asthma care and actual care delivered to asthma patients. Paediatric asthma is still one of the major reasons for attendance at Accident and Emergency. 

Outcomes for children and young people with epilepsy are far from ideal. The systemic issues identified decades ago remain problems today. Epilepsy care for children and young people continues to be inadequate, relative to clear consensus and national guidelines. 

This section links to the following sections in the JSNA:

Diabetes

References:

Asthma UK. Asthma Fact and Statistics. Available at: https://www.asthma.org.uk/about/media/facts-and-statistics/ [Accessed 28th November 2016].  

Department for Education (updated December 2015). Supporting Pupils at School with Medical Conditions: statutory guidance for governing bodies of maintained schools and proprietors of academies in England. London, DfE. 

Diabetes UK (2015). Facts and Stats. London, Diabetes UK.  

Health and Social Care Information Centre (HSCIC). (2016). Emergency Hospital Admissions: children with asthma: indirectly standardised percent, <16 years, annual trend, F, M, P.

[Accessed 28th November 2016]. 

King's Fund. Long-term conditions and multi-morbidity. Available at: https://www.kingsfund.org.uk/time-to-think-differently/trends/disease-and-disability/long-term-conditions-multi-morbidity [Accessed 28th November 2016]. 

Royal College of Paediatrics and Child Health (2009). Growing up with diabetes: children and young people with diabetes in England. Research Report. Funded by NHS Diabetes. London, Royal College of Paediatrics and Child Health. 

Young Epilepsy. What is epilepsy?-  Epilepsy facts and stats. Available at: http://www.youngepilepsy.org.uk/about-epilepsy/what-is-epilepsy/?jjj=1480350877818 [Accessed 28th November 2016]. 

 

Switch To High Contrast Mode