Sleepless Nights

INTRODUCTION

The National Asthma Campaign researched the extent to which asthma affects children and their families, and has produced the Sleepless nights, anxious days report, which is a personal perspective on the true impact asthma can have on the life of a parent1 of a child with asthma.

As well as the usual concerns a parent has, such as always being on the look out for potential triggers that may set off their child's asthma, the report reveals that a parent is faced with a lack of support from the professionals that care for their child.

Therefore, the report also recommends key changes needed, to ensure that the concerns raised by many of the parents can be addressed.

KEY FINDINGS

When first discussing the impact of their child's asthma on the rest of the family, many parents felt that it made little or no difference to their quality of life. However, when parents analyzed their family's lifestyle, they realized that they had understated the impact. For example, a quarter are woken one or more times a week because of their child's asthma and one in six (17%) have to take time off work to care for their child when asthma has made them unwell.

For Sue Jessop from Surrey, her son Sam's asthma diagnosis was a life-changing moment.... 'The first thing to change is an increasing sense of anxiety. As first-time parents, we were already anxious but now this diagnosis made it worse.' She recalls. 'He was only nine months old when we were told he had asthma and from that moment onwards I would worry about caring for him; about not being there when he needed me. It is probably how I will always feel.'

The research revealed five main concerns that unite a significant number of parents of children with asthma in the UK. The National Asthma Campaign estimates there are approximately 2.5 million parents of children with asthma in the UK3 and, of them, approximately 625,000 face one or more of these five key concerns4:

* Gaining an accurate and early diagnosis

When a child is first diagnosed with asthma, often the parent experiences the most distress and shock. This can be exacerbated if health professionals do not have, or do not give, enough time to developing a partnership with parents built on mutual confidence and openness. Getting a diagnosis can be a struggle for some parents as can being involved in a joint decision about their child's treatment.

* A lack of support from their child's school

Often teachers are willing to help a child with asthma but do not receive the training and support from their employer. The result is that they are wary of administering asthma medication or do not know what to do in the case of an asthma attack.

The classroom assistant said to me, 'Even if he's blue and laying on the floor, until he goes.... unconscious I'm not allowed to say to him 'do you want your puffer?' and that is at the age of four!' Focus group parent.

* Negative experiences at Accident and Emergency

With a child admitted to hospital every 16 minutes in the UK, the Accident & Emergency (A&E) department is familiar territory for parents. It is also one of the most traumatic experiences which they and their child go through. A&E can be an inhospitable place for children and many parents in the focus groups felt more could be done to make the experience easier for them.

* Getting substandard care from their GP

The NOPWA5 study revealed that one in five felt they did not get the support they needed from the medical profession. Many parents feel that their doctors do not understand that parents have a emotional response when their child is unwell and furthermore, they felt that healthcare professionals undervalued the asthma expertise they have as parents.

'There should be a recognition that mother knows best. Still the medical profession doesn't listen to parents.' Focus group parent.

* Anxiety about medication

Medicine is part of daily life for families with asthma. Children can be taking both preventer and reliever inhalers, and for some children who have severe asthma, steroid tablets, preventer tablets and long-acting reliever inhalers are taken as well. Whilst generally accepting that their child needs to take medication to control their asthma, parents are concerned that the preventer includes steroids. This concern can, as NOPWA demonstrates, result in non-compliance.

WHAT WE ARE CALLING FOR

As well as committing its own resources to improve the situation, the National Asthma Campaign is calling on parents, teachers, health professionals, parliamentarians and government to do their part to help reduce the unnecessary stress and anxiety placed on so many of the parents of the UK's 1.4 million children with asthma.

The National Asthma Campaign has identified a series of actions that should be taken to ensure quality of life improves for both parents and their children:

* The new National Service Framework for children to include asthma as a priority

* Minimum standards of asthma care to be established in the NHS

* More resources so Primary Care Trusts can give local priority to asthma

* GPs and nurses to treat parents as equal partners in the care of children with asthma and carry out regular assessments and monitoring with longer consultation times

* New legislation to be introduced to make it compulsory for all schools to implement an asthma policy

* Lung function and allergy testing to be much more widely available for use where appropriate

* More government research into the early years of life to decipher what makes a child develop asthma and how to prevent it.

Many of the parents' concerns and criticisms are leveled at public services which are underfunded, understaffed and, consequently under immense strain. Parents from the focus groups were acutely aware of this.

Although parents are asking for more time to spend discussing their child's asthma with a GP, this does involve employing more doctors which requires financial investment. However, this initial investment will result in more parents understanding their child's asthma and helping to prevent asthma emergencies which in turn, would mean longer term savings through reduced hospital admissions and less time off work and school.

On World Asthma Day, the All Party Parliamentary Asthma Group are hosting a reception at Portcullis House to encourage MPs to take up these parents' concerns locally in their constituencies.