in more ways than one

Full text

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Lloyd is just one of the 1.1 million children in the UK missing out on a normal childhood because he has asthma. Asthma affects an alarming one in 11 children meaning the UK has one of the highest rates of asthma in children worldwide. In 2008 Asthma UK Scotland was commissioned by NHS Quality Improvement Scotland to talk to

children and young people with asthma as part of a wider review of services for children and young people. The resulting report, In Their Own Words, painted a bleak picture and showed for the first time how children and young people with asthma were missing out or felt excluded from normal everyday activities because of their condition. For this World Asthma Day, 5 May 2009, we have continued this work and engaged with children and young people with asthma from across the whole of the UK. We have listened to them tell us what it is really like to live with the condition on a daily basis. We have heard not so much about the medical aspects of their condition, but rather about the everyday issues children and young people face and how this can mean they miss out or are excluded from essential opportunities and experiences.

This report (part of a set of four) captures these views as they have been conveyed to us. The responses will ensure that we can continue to be the voice for children and young people with asthma and learn and understand the issues important to them. We are very grateful to all the children and young people with asthma who met with us to tell us how they feel, filled in a questionnaire or responded to our online survey.

This is part of Asthma UK’s extensive range of work to ensure children and young people with asthma are no longer missing out and get to grow and develop in a way that sees their condition no longer holding them back.

Neil Churchill

Chief Executive, Asthma UK 5 May 2009

A report by Asthma UK on the views and experiences of children and young people with asthma

Missing

out.

AsthMA

AttAcKs

in More wAys

thAn one

‘I hate my asthma,

it’s the worst

thing in my world.

I can’t play as

much sport as

my friends and

I don’t like going

into hospital.’

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This set of reports is a compilation of new and existing Asthma UK work to highlight the problems children and young people with asthma face.

Existing work was primarily in the form of three reports:

Getting It Sorted – this report shows the experiences of children and young people with asthma in Leeds, carried out by Leeds Metropolitan University, published in November 2008

In Their Own Words – this report documents the results of focus groups with children and young people with asthma across Scotland, published by Asthma UK Scotland, November 2008

Asthma UK’s Alert to Asthma programme evaluation report, evaluation carried out in 2008.

In February and March 2009, seven focus groups were held in England, Northern Ireland and Wales with children and young people attending aged between 5 –18 years old. Direct quotes taken from the focus groups have been used within this report but are anonymous. The words, views, opinions and experiences are all those of the children and young people who shared their stories with us.

During this time we also:

ran an online survey for children and young people with asthma

sent questionnaires to 300 children and young people who have taken part in our Kick Asthma holidays over the past three years

commissioned the National Foundation for Educational Research to survey a representative sample of over 1,600 teachers in England.

This set of reports also takes into account comments and themes from

Asthma UK’s children’s and young peoples website Kick Asthma (kickasthma.org.uk) over the past year.

having asthma shouldn’t mean... Similar issues and concerns were clearly highlighted through talking and listening to the opinions and views of children and young people with asthma.

They told us they don’t like: missing so many school days

because of their asthma and being accused of ‘skiving’ on their return being laughed at because they are

always wheezing or have to sit out being placed in a ‘protective

bubble’ by adults who simply do not understand the condition

not being able to concentrate because of a lack of sleep due to their asthma symptoms

not being able to go round to their friend’s house because ‘they have two cats and the last time I went I had asthma attacks for a week’. These feelings have been grouped into three key areas of concern for children and young people which are further explored within this report. These are: school physical activity asthma awareness.

Key findings

Methodology

only

58

% of

children with

asthma or

their parents

are confident

that their class

teacher knows

what to do in

the event of an

asthma attack

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A child spends on average 200 days a year at school receiving their education and learning fundamental life skills. Children with asthma though are often unable to fully take part in school life because they have symptoms that mean they are absent or have teachers that are not confident or understand how to support them. We heard children and young people tell us about missing out on school trips, being singled out as being different to their classmates or being made to feel that their asthma was not a valid reason for feeling unwell. The real difficulties faced by children and young people at school surround the lack of training and understanding of teachers. This was highlighted when a young person told us they did not like their chemistry teacher saying their asthma made them a ‘liability’ and asking them to stand outside the classroom while an experiment took place.

Focus group quotes

‘Some people say like “oh I wish I had asthma so I could get off school”. I wish I could just tell them that asthma’s not nice and you shouldn’t wish that you had it.’

‘Teachers aren’t really bothered; they think you should just carry on so there’s no point telling them.’ ‘Sometimes my form teacher doesn’t believe me and thinks I’m being melodramatic or over-reacting.’

on average

there are

two children

with asthma

in every

classroom

in the UK

1

‘I’ve had to miss up

to half of the school

year due to my

asthma and have

been bullied because

of my inhalers and the

effects of steroids’

May HoLLoway, 18

school

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Asthma UK commissioned the National Foundation for Educational Research to ask teachers how confident they would be in knowing what to do if a child in their class experienced an asthma attack.

A survey of over 1,600 teachers in England revealed that only 24% would be completely confident in this situation, indicating that more than three quarters of teachers would benefit from better support, guidance and training on managing asthma in schools. The survey also suggested that this problem is particularly acute among secondary school teachers, who were more likely than primary school teachers to say that they were not confident of what to do. Nearly one quarter of children and young people who responded to a questionnaire to Kick Asthma holidays participants said their teachers did not know what to do in an asthma attack.

An Asthma UK online survey of children and young people with asthma revealed that:

87%

had missed at least one day of school because of their asthma

49%

had problems joining in with general lessons

48%

had problems going on school trips

Our Alert to Asthma programme was established by Asthma UK Scotland in 2002

and has since extended to Wales and Northern Ireland. The programme aims to recruit nurses qualified in asthma care to deliver a programme that increases awareness of asthma among people working in the early years sector and primary schools. It will be piloted in North West England for the first time in 2009.

Evaluation in 2008 found that before the sessions, 85% of participants admitted they didn’t know enough about asthma and 65% said they would be able to supervise a child to use an inhaler properly; afterwards 93% said they now felt confident in doing so.

Message board posts – kickasthma.org.uk

‘I had to miss out on a year 9 NCT test. I had to come out of a maths test in the morning (due to asthma), and I could understand why they wouldn’t let me back into that one, but they wouldn’t let me do the one that afternoon. It wasn’t really important but I worry about my GCSEs, if I end up having to come out of one of those.’ ‘Got sent home from school again cuz of all the silly people spraying deodorants in the changing rooms.

They’re meant 2 be banned but none of the teachers ever stop people using them. Mum is writing a note to the school complaining about it again but it won’t stop them – they will just moan at me on Monday.’

‘Been asked to go home because my wheezing was interrupting silent reading – yes seriously.’

Alert to

Asthma

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It is clear that children and young people have an attitude to asthma which fluctuates between frustration and ambivalence; much of the frustration occurring when they miss out on sports or PE, sometimes through no fault of their own. A teacher or coach may not understand asthma and therefore does not know how to work with children and young people with the condition. We heard from children and young people that adults push them to take part even though they are in obvious discomfort, or are so fearful that any kind of exercise will affect their asthma that they unnecessarily limit participation. This leads to large numbers of children not achieving the levels of physical activity that they need in order to maintain or improve their health, as well as an increase in the potential for bullying as the child is seen as different.

Focus group quotes

‘Why don’t they ask you what you could do instead of not letting you do anything? I’d rather do something than sit about doing nothing and everyone looking at me.’

‘It’s really annoying, there was another girl in my class who had asthma and she did really well and they thought that I was just lazy because I wasn’t as good as her.’ ‘Some people do think you’re skiving, that you just want to get out of PE and that really makes me feel worse.’

‘I play loads of football and it’s annoying ‘cos when I come off for a minute to take my inhaler they won’t let me back on even when I’m fine and I say I’m fine.’

‘I couldn’t do PE because I didn’t have an inhaler, but they didn’t believe me and I got forced to do it and I had an asthma attack.’

‘I had to leave a game I was winning to get my asthma pump. I told the teacher that I needed it and he said that if I left the game I couldn’t win. He wouldn’t stop the game for me.’

An Asthma UK online survey of children and young people with asthma revealed that:

73%

had problems joining in PE lessons

71%

had problems playing sport outside school

A questionnaire sent to children and young people who had attended a Kick Asthma holiday revealed that:

90%

said their asthma stopped them doing exercise

Message board posts – kickasthma.org.uk

‘One of my PE teachers is really, really annoying. She made me run loads of laps one day (when it was really cold... a bad combo in my case) and then when I started wheezing and being really out of breath she asked me what was wrong and I told her I felt a bit asthmatic. So what did she tell me to do... walk the laps to try and ease it off. So I did that... and (surprise, surprise) it didn’t really help!!’

only

65

% of

parents are

confident that

their child’s

Pe teacher

knows what to

do in the event

of an asthma

attack

Physical

activity

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The overriding message from our talks with children and young people with asthma was the frustration, and concern they felt about the general awareness of asthma and specifically about how serious the condition can be. The consensus was that if work was done to increase awareness of asthma that would have a beneficial knock-on effect for everyone with the condition.

Focus group quotes

‘My friends, they don’t have any idea. They think it’s just like a wee small sort of thing. That makes it even more annoying almost. If you did get depressed or sad about it you want someone to talk to. If your friends don’t know anything about it they could as well just laugh in your face and then that would leave you with nowhere to go.’

‘My mum said we can’t keep pets because it makes our asthma worse; all my friends have pets.’

‘You spend a lot of time at home

because you’re ill. And when you cancel on your friends a lot you worry they might stop asking you to go places.’ ‘Some people treat me with pity and ask a lot of questions about my asthma, for example is it contagious?’

‘If you are in a busy place and your breathing starts to bother you, and people staring at you – it’s a bit embarrassing.’

‘I wish people would know that having asthma is annoying, you can’t get rid of it and it’s not our fault.’

An Asthma UK online survey of children and young people with asthma revealed that:

40%

said their asthma stops them having fun

51%

had problems visiting friends

A questionnaire sent to children and young people who had attended a Kick Asthma holiday revealed that:

98%

said their asthma stopped them doing ‘something’

Asthma

awareness

‘My asthma gets really

bad and it does annoy

me as it means I have

to miss out on things like

sport and school trips.’

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Message board posts – kickasthma.org.uk

‘I get so embarrassed after I have an asthma attack (and while I’m having one). It’s so embarrassing when you’re sitting there with an oxygen mask, having a neb and everyone’s just staring at you. I also get called a “problem child” by some of the girls in my year. I know it’s meant as a joke but sometimes it doesn’t feel like one!!’ ‘I hate taking inhalers in front of people so I have to get away from people when I do that! I also get

lots of jokes about it from my friends and teachers, which I don’t really mind anymore but sometimes it gets quite annoying!’

‘I miss out on going to visit my cousins as my aunty has two dogs and I am allergic to them!’

‘I have missed out a few times. I can’t go to sleepovers sometimes when my asthma is bad because I cough all night and keep people awake.’

‘Some people say

like “oh I wish I had

asthma so I could

get off school”. I

wish I could just tell

them that asthma’s

not nice and you

shouldn’t wish that

you had it.’

FocUs groUP PArticiPAnt

what is

Asthma UK

doing?

Asthma UK is helping to ensure

children and young people do not miss out on their childhood by providing essential services and resources.

Kick Asthma holidays

Asthma UK’s Kick Asthma holidays for children and young people with asthma can be life-changing experiences for those who attend. Combining physical and social activities such as abseiling, kayaking, discos and quizzes, with educational sessions that increase understanding about asthma, the holidays increase confidence and give parents and carers a much needed break from caring for a child with a long-term condition. Over the next few years we plan to increase the number of children who can benefit from attending a Kick Asthma holiday.

Asthma UK Adviceline

The Asthma UK Adviceline (0800 121 62 44) offers a free service to children, young people, parents, teachers and healthcare professionals who need asthma advice from fully trained and experienced asthma nurse specialists.

health promotion materials

Asthma UK provides a range of booklets and support materials for parents of children with asthma including information on asthma medicines and treatments, how to manage a child’s asthma and what to do in an asthma attack.

Asthma UK’s ‘Out There & Active’ campaign aims to encourage children with asthma to take part in sports and physical activities by promoting understanding about exercise and asthma. Materials produced for the campaign include factfiles, posters and booklets for young people, parents, teachers and sports coaches all containing tips on exercising safely with asthma.

We are currently developing a personal asthma action plan for children with asthma aged 8–11 years to support them in learning how to manage their condition themselves. Research has shown that people who do not have a written personal asthma action plan are four times more likely to need emergency hospital treatment for asthma.2

We are also developing an asthma activity tool for schools which will launch in summer 2009. This interactive resource will fit into the curriculum of Key Stage 2 and will provide teachers with the tools and motivations to include asthma in assemblies and lessons as appropriate for their school.

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Asthma UK is campaigning across the UK for service standards for the care of children and young people with asthma. We also want to ensure that standards are actively implemented and monitored. This includes making sure that school inspections include checking that schools have active asthma policies which teachers are fully aware of. In 2007, seven clinical standards for children and young people were introduced in Scotland; these were: organisation of asthma care, healthcare professional training and education, schools, linking care, high risk asthma groups, clinical review, and emergency care. Northern Ireland is currently consulting on standards and Wales has a limited number of

standards. We are campaigning for England to follow the lead of Scotland and Northern Ireland.

campaigning

for children’s

asthma

standards

‘They sometimes

think they’re

helping. It’s like

“Oh no you

shouldn’t play that

you have asthma”.

But that’s not

helping – I want

to do it and I feel

left out.’

Focus grouP ParticiPant

Medical conditions at school (medicalconditionsatschool.org.uk)

Asthma UK has worked in partnership with other health charities to produce a resource to help schools in England develop and implement policies which ensure that children with long-term medical conditions, including asthma, receive the right support at school. Without clear policies in place, schools and teachers will not have the confidence to deal with an emergency, or ensure that children and young people get the most out of their time at school. To complement this pack a resource for school healthcare professionals to carry out awareness sessions on long-term medical conditions with school staff was also developed.

In Scotland, Wales and Northern Ireland, Asthma UK’s School Asthma Pack is widely circulated.

websites

The Asthma UK website (asthma.org. uk) gives the latest independent news and advice on asthma and contains a section for parents and schools which includes tips on how to help a school become asthma-friendly.

Kick Asthma (kickasthma.org.uk) is Asthma UK’s website for children and young people with asthma and allows them to learn what it’s like to have the condition and talk to others with asthma on the moderated message boards.

Alert to Asthma

Asthma UK’s Alert to Asthma sessions train early years carers and teachers in the basic understanding of asthma, its treatment and knowledge of what to do if a child in their care has an asthma attack. So far this initiative has been delivered in Scotland, Wales and Northern Ireland and in 2009 we will also be carrying out sessions in North West England.

Asthma nurses

Asthma UK funded Dudley Primary Care Trust to employ an asthma nurse to work across schools and health services to improve asthma care and management for children and young people. Following this success we will be funding two more posts in 2009 and hope to fund more in the future.

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‘They make you

feel as if you’re

disabled and you

can’t do things

that everybody

else can.’

FocUs groUP PArticiPAnt

1. recognition and awareness of asthma

The one in eleven children and young people who have asthma should be recognised as a vulnerable group with specific needs appropriately and sensitively. Appropriate support and training should be given to school staff, including both teachers and support staff, so they can support children and young people with asthma in the event of an asthma attack

and understand how to fully include them in lessons and activities. We recommend that all schools should access the Asthma UK Alert to Asthma training programme and this should be coordinated and paid for through local education authorities.

2. All schools to create and implement a policy to support children and young people with asthma, backed by an awareness raising campaign

We believe all schools should have a policy in place setting out how they plan to meet the support needs of children with asthma and this should include measures on medicines management.

At present, too many teachers do not know what to do when a child has an asthma attack and only 58% of children with asthma or their parents are confident that their class teacher knows what to do in the event of an asthma attack.3 Asthma UK has jointly produced a policy resource pack for schools in England, which sets out how they can support children and young people with asthma and other long-term medical conditions.

3. Develop and implement a set of consistent standards for asthma services that will tackle health inequalities

There is an eightfold difference in asthma emergency hospital admissions for children between the highest and lowest areas in England, two and half fold difference in Scotland, more than two fold in Wales and a 50% variation in Northern Ireland.4 More needs to be done to

tackle these huge variations and dramatically reduce the number of emergency admissions. On World Asthma Day 2008, Asthma UK launched our Good Asthma Services Checklist which sets out the key features of effective services. We call on governments and health services across the UK to implement these standards as a minimum. We believe the involvement of children and parents of children from seldom heard groups in the design of services is key, so that their coping strategies and health-seeking behaviours are taken into account. We believe consistent standards for asthma services, based on our Good Asthma Services Checklist, will go a long way to addressing the current postcode lottery of care.

4. increase the number of school nurses

We believe there should be access to a school nurse in every school. School nurses are well placed to play a key role in children’s health and well-being. They bridge the gap between school and health services and can advise teachers about common medical conditions, help schools to implement policies for medical conditions and give guidance on emergency medicine. More resources are needed to make this a reality.

5. school inspections should

measure the performance of schools in supporting and including children with health conditions

Inspection frameworks across the UK should ensure schools prioritise the health and well-being of their pupils and that schools are actively implementing school asthma policies.

Asthma UK

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there is one consistent and powerful theme from listening to children and young people with asthma – it is their belief that there is a huge lack of awareness about what it is actually like to have the condition, and what those with asthma can and can’t do. the benefits of addressing this are

clear – confident children and young people who live their lives to the full, without the worry of being excluded due to their asthma or victimised through others’ ignorance. these individuals can then take their place confidently in society and actively contribute to our future.

conclusion

references

1calculated from average UK class size of approx 24

2Adams RJ, Smith BJ, Ruffin RE, Factors associated with hospital admissions and repeat emergency

department visits for adults with asthma, Thorax, 2000, 55:566-73 3Asthma UK, National Asthma Panel, 2008

4Hospital Episode Statistics, Department of Health; Scottish Morbidity Record, Information Services

Division, NHS Scotland; Health Services Wales; Hospital Inpatients System, Department of Health, Social Services & Public Safety Northern Ireland, operating year April 2006 to March 2007

Asthma UK, Summit House, 70 Wilson Street, London EC2A 2DB t020 7786 4900F020 7256 6075 asthma.org.uk info@asthma.org.uk

©2009 Asthma UK

Registered charity number England 802364 and Scotland SCO39322

‘An awful lot of

people have heard

of asthma but they

don’t really know

what it is.’

FocUs groUP PArticiPAnt

Figure

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References

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