in more ways than one

Transcription

1 Missing attacks in more ways out.asthma than one A report by Asthma UK on the views and experiences of children and young people with asthma 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. Lloyd Price, 11 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 This report has been supported by a grant from Napp Pharmaceuticals Limited

2 Methodology 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 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. 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 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. Key findings 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.

3 School On average there are two children with asthma in every classroom in the UK 1 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. 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

4 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. 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 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. Alert to Asthma 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 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. 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. Got sent home from school again cuz of all the silly people spraying deodorants in the changing rooms.

5 Physical activity Only 65% of parents are confident that their child s PE teacher knows what to do in the event of an asthma attack 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!!

6 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. Louis Lawson, 14 Asthma awareness 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

7 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 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. 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 ( ) 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 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.

8 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 longterm 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. Campaigning for children s asthma standards 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.

9 Asthma UK recommendations 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 healthseeking 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.

10 Conclusion 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. An awful lot of people have heard of asthma but they don t really know what it is. Focus group participant References 1 calculated from average UK class size of approx 24 2 Adams RJ, Smith BJ, Ruffin RE, Factors associated with hospital admissions and repeat emergency department visits for adults with asthma, Thorax, 2000, 55: Asthma UK, National Asthma Panel, Hospital 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 T F asthma.org.uk info@asthma.org.uk 2009 Asthma UK Registered charity number England and Scotland SCO39322 WA