Established in 2019, the Asthma &Me Ambassadors formed to support the National Respiratory Audit Programme (NRAP). They bring their voices, experiences, hopes and wishes to life through youth-led project work and advocacy.
Our journey
We joined together from all over the UK. Some of us are personally affected by asthma, and others affected through people they know. We are on a mission to improve asthma care and services for children and young people. We have collected voice from children, young people and families in their clinics across the UK. We hope we can represent their voice in different settings and have the support of others to take action and implement the changes they say are needed.
It is every child’s right, article 24 of the United Nations on the Rights of the Child, to have the best possible health care and with your help we can achieve this.
In 2021 we were really proud to be part of the award winning team of volunteers who were given the HQIP Richard Driscoll Memorial Award for patient and public involvement.
Our volunteering so far
By listening to the voice of others and sharing our own experiences, we identified inconsistencies of care for patients with asthma. These include:
- returning to face-to-face appointments after COVID-19
- the level of care that is offered at our GPs
- arriving at A&E if you have an attack and what happens
- knowledge, awareness and understanding of school staff and teachers.
We worked with NRAP (was NACAP) to create patient leaflets to help patients and families to know what happens when you go to A&E with an asthma attack, how to stay healthy, happy and well as well as hints and tips for asthma care. There are three leaflets depending on your age - and some have games and activities in them! Download the patient leaflets below
We also did some mystery shopping. We looked at different organisations and the quality of asthma support offered to see how accessible this is and if truly an aid to young people and their asthma. We thought about what could be improved and some good examples of what to do (we loved CHAH's Instagram - read our review on page 26 of RCPCH Milestones for autumn 2022!).
We also created this short animation to explain the priorities for the audit that would help children and young people to know more about what helps to keep you healthy, happy and well with your asthma care. (There isn't any sound but there is a transcript in the downloads box below).
What are we working on in 2024?
We continue to meet online and sometimes in person. Some topics we've been really interested in:
- how our asthma information is shared between the people that support us, like GPs, schools and hospitals
- the impact of poor air quality on our asthma - you can listen to Demi and Toby on the #AskAboutAsthma podcast that was published on 13 Sept 2024
- seasonal asthma issues
- the importance of getting the right help quickly from the right person who has good asthma training
- having good information when you leave hospital after an asthma attack
- new medicines and how they are changing to be more climate friendly.
You can read our tips for asthma services on X and download our poster from RCPCH Conference 2024 below.
We meet regularly with the NRAP team leading the asthma audit. We have spoken with them about:
- what needs to happen to improve the health and wellbeing of children and young people with asthma to contribute to their health improvement goals
- what data sharing and data governance means to us
- the impact of asthma on our education and school support
- what we think are priorities for the future, and how this could be collected as part of the audit
- how to get more people to know about the audit and more children and young people to get involved.
You can read about the NRAP work in the Breathing Well report (PDF), which tells you the stats and facts about childhood asthma and other lung conditions.
We want NRAP clinics to know...
The impact you have - it might be paperwork for you, but for a 12 year old having the second asthma attack of the month it makes a big difference
You are making a difference, look at the data
Look at the impact and the difference it can make
Who are the Asthma &Me Ambassadors?
- Jamie
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Hello, My name is Jamie, I’m 16 and a proud Scouser from Liverpool. I have been volunteering with RCPCH &Us for seven years now, working on lots of different projects but working on the asthma audit to help improve and change the information children and young people receive about the NRAP priorities and the level of care they should expect to receive.
My favourite part is the kind people I am working alongside in the group but also the doctors and nurses that have supported us.
- Max
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Hi there, I'm Max! I live in Nottingham and have asthma myself. I can play the drums and am learning the guitar (I'm not the best at the moment!).
I love helping out and volunteering with RCPCH &Us and it's great to get my voice heard and really make a difference.
- Shreya
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Hi, I’m Shreya! I live in Oxford. I love playing netball even though I have asthma.
I got involved with RCPCH &Us about a year and a half ago and I absolutely love it because I get to make a difference to children and young people's experiences in hospitals.
- Toby
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Hi! I'm Toby, and I joined the RCPCH &Us group about a three years ago after I participated in a survey about being a young person in the NHS. Everyone in the group was really friendly and welcoming to me, and we have managed to do some great work together to help other children and young people.
The thing I like the most about this group is being able to make real changes to the experience of children and young people, including a project we have worked on to improve awareness about asthma for those that are newly diagnosed.
- Noor
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My name is Noor and I first joined the NACAP panel (now NRAP) because I am passionate about making change in asthma care to support young people and improving their experiences with this condition. I’ve learnt so many things from being in the asthma project, especially because I don’t have asthma myself. I’ve learnt lots about types of inhalers, the stigma about spacers, factors affecting the asthma of an individual and more!
Overall, being involved in audits, linking up with other great organisations and working with fellow young people is a truly amazing experience and I learn so much about asthma care in the NHS.
- Jack
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What asthma means to me: Asthma means having a constant worry in the back of my mind. Have I taken my medication, can I play this sport or do this activity? Am I going to be ok? Asthma means having to carry an inhaler wherever I go and is a constant reminder to my worries. Reoccurring appointments making sure I’m ok.
It’s changed my life for good and for bad. The good parts are the people I have met and the care I have received. Jack, 18
- Demi
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I’m involved to help influence positive changes to asthma care / services. This is furthered by first hand experiences and I have been part of the Asthma &Me Ambassador’s since the beginning. Asthma means to me, advocating for one’s own needs to be met, strength not only physically and mentally, thinking before you do anything, asking for help - giving and receiving it, and using mindfulness to try and claim control acceptance to your limitations. Demi, 19
- Hamnah
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Hi my name is Hamnah and I’m 16, I am part of the NRAP panel, I joined the panel to make a voice about asthma in small children and adults because i have asthma myself and I think it is important for young people to feel comfortable and not be restricted from their asthma. I have learnt so many things from NACAP and love learning new things from it. I am so happy I got to be apart of the asthma project to help young people and adults.
Join us
As young people volunteering, would love for asthma units to get in touch and see how we can help you or if we can meet with the children, young people and families your support. Just email and_us@rcpch.ac.uk and we'll get back to you as soon as possible.
Please share our leaflets in your clinics. They'll help your patients know what to do when they go to hospital with an asthma attack.
If you are a young person aged between 11 - 25 and want to join as an Asthma &Me Ambassador, email and_us@rcpch.ac.uk to find out more.
Messages from our young volunteers:
"We are not trying to make change – we are actually doing it!"
"I always go away inspired thinking about so many different things and make an impact – it’s so great to have the platform to make an impact"
"It's exciting – we know we are going to make a change!"
"This is the room where it happens!"
Paediatricians said:
"I feel grounded, it’s energising to have these conversations!"
"We should do this more often as health care professionals, hear from groups who are thinking about these issues and being in the space with you – and knowing that these conversations are happening"
Big thanks to the Asthma &Me Ambassadors Demi, Hamnah, Jack, Jamie, Max, Noor, Shreya and Toby for planning and writing this web page.