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How asthma has affected me throughout my life

Word and artwork contributed by Robert Adoo Kissi-Debrah 

My name is Robert Adoo Kissi-Debrah and I am 15 years old. I live in southeast London, and I’ve had asthma since I was 1. Because of this, I’ve had to take asthma medication every single morning and night.

I walk to school with my twin sister almost every day to get as much exercise and fresh air as possible. When we walk, we must avoid main roads due to the high pollution from all the cars, which could trigger my asthma. If I start to cough, wheeze, or feel a tightness in my chest and difficulty breathing, I must use my salbutamol. It can help by relaxing the muscles of the airways into my lungs, which makes it easier to breathe. Salbutamol comes in an inhaler (a puffer).

Sometimes it will be hard to take an inhaler properly (especially if you are having an asthma attack), so I must make sure that my sister and friends know how to use an inhaler properly. Since I am with them most of the time, if anything happens to me, they will be able to help.

However, I have not had to even use my salbutamol in over a month, and I have not had to go into A&E in over 3½ years due to my asthma being under control. It is important that it is controlled right now as things such as the heat could easily trigger my asthma if it were not controlled.

Exercise is important to me as it keeps me healthy by reducing inflammatory proteins. This reduction improves how my airways would respond to exercise. The more I work out, the more my lungs get used to consuming oxygen and their capacity increases. If I am not careful and push myself too much though, it could lead to narrowing of the airways in the lungs. This could cause shortness of breath, wheezing, coughing, and other symptoms during or after exercise. Usually I am fine though, as I know my limits and when I need to stop. To exercise, I go to the gym every Tuesday, Thursday, and Sunday. I also walk to school and back home every day, which is about 3.4 miles. When having an asthma attack, you are too breathless to speak, eat or sleep. Your breathing is getting faster, and it feels like you cannot catch your breath. You can also feel chest tightness or pain. Your peak flow score will also be lower than normal.

When I was younger, I had to go to the hospital a lot. I would have to stay overnight on my own which could be scary and upsetting, but my spirits were lifted when my family and friends came to visit in the mornings. This affected my learning as I would not be able to go to school. At that time, I felt like this was a good thing, but now I realise missing lessons for days can leave you with quite a large gap in your knowledge that you will have to catch up on when you get back to school.

Asthma doesn’t just affect your learning when in hospital but also when in school. If I had to take my inhaler at school, I would have to leave the class. When taking my inhaler in primary school, I would always feel embarrassed and feel like everyone would be watching me, but now I realise the importance of it and how, if taken incorrectly, it could leave you in a worse situation.

My mum runs The Ella Roberta Foundation, which raises awareness about asthma and improves air quality for everyone, everywhere. We campaign for asthma guidelines to be followed by governments, councils, medical professionals, and the public, all over the world. The Ella Roberta Foundation believes in a world where clean air is a human right and that everyone should be able to breathe air that is free from toxic pollution, regardless of where they live, their economic status or their ethnic background.

Asthma is a long-term medical condition that has affected me my whole life. Although it can be challenging at times, I have never allowed it to control my life or hold me back from completing any task ahead of me.

 

Visit the #AskAboutAsthma 2022 campaign page for more content.


Campaigning for better inhaler images in the media

By Sara Nelson RGN, BSc (Hons), MSc, Queens Nurse, Programme Lead, Children and Young People’s Transformation Programme NHS England (London Region) and Viv Marsh RGN, RSCN, BSc (Hons), Queen’s Nurse, Clinical Lead for CYP Asthma Transformation for the Black Country Integrated Care Board

The importance of every child and young person with asthma being able to use their inhalers effectively is one of the four key pillars of the #AskAboutAsthma campaign and it is vital to share this message as widely as possible.

Last year saw the launch of our #RightInhalerImage campaign. The campaign evolved from our frustration about the poor images published by mainstream and medical media portraying incorrect/inappropriate inhaler use. Such images continually convey and reinforce poor health messages to people with asthma or other respiratory disease, and to health professionals who are not experienced in respiratory care.

Images illustrating incorrect inhaler use could negatively impact asthma control, leading to poor quality of life and potentially causing asthma attacks.

Our frustration was shared by a number of leading clinicians across the UK and we convened a group of expert respiratory healthcare professionals and patient representatives to unite and address their concerns with the aim of improving the quality of inhaler images. We believe our campaign will improve information for patients, healthcare professionals and the public about the correct use of inhalers.

Aims of the campaign

The #RightInhalerImage Campaign tackles two key issues:

  1. We often see images of blue inhalers (rescue/reliever medication) being used, rather than brown or other colours (preventer medication), which provide the medication needed to actually treat and control asthma. There is good evidence that overuse of, or over-reliance on, blue inhalers is harmful; it is linked with increased risk of asthma attacks and was identified as a key theme associated with avoidable asthma deaths in the National Review of Asthma Deaths (2014).

Use of rescue medication (blue inhalers) should not be normalised. Asthma is uncontrolled if rescue medication is regularly needed more than twice a week. This should never be ignored; it is an alarm bell that a medical review is needed.

  1. Inhalers are not always easy to use, and correct technique is important to ensure the medicine is deposited in the lungs where it is needed. There are many different types of inhaler device and the technique needed to use each one differs. Most children and many young people and adults use pressurised Metered Dose Inhalers (pMDIs) but these are quite difficult to use correctly on their own. Spacer devices make pMDIs much easier to use and help the medicine to reach the lungs effectively. We often see images of children using inhalers that, in real life, they would not be able to use correctly. For example, images of children using pMDIs without a spacer or using a type of inhaler only suitable for adolescents or adults.

Our aims are simple: inhaler images need to support high quality healthcare messages. Images should show preventer inhalers being used and the inhaler types should be appropriate for the person in the image. Spacer use should be normalised for everyone who uses a pMDI to treat their asthma or other respiratory disease.

Where are we now

Our campaign kickstarted the development of a social movement for change, helping to build a foundation of awareness and information to pave the way for improved respiratory care in the UK and beyond.

The campaign hashtag is widely known amongst respiratory interested social media users and continues to be used to highlight good inhaler images or to call for poor inhaler images to be removed or changed.

Our abstract about the campaign won the most patient-centred abstract at the 2021 Primary Care Respiratory Society (PCRS) conference

Our resources are still available and we have joined forces with the International Primary Care Respiratory Group (IPCRG) who are continuing to take this project forward with the development and provision of an image library. The IPCRG is a brilliant organisation working to improve respiratory care in many countries around the world and the image library fits well with their Asthma Right Care programme.

We handed over our campaign to the IPCRG at their conference in Malaga in May 2022 where we also presented our poster ‘From kick-start to full steam ahead for the #RightInhalerImage Campaign’. We are grateful to the IPCRG for taking this important work forward and for continuing to grow the image library with a wide range of inhaler images that illustrate inhalers being used correctly by a wide variety of people in many different settings. The stewardship of the IPCRG is an opportunity to work internationally, increasing both the reach of the campaign and the number and type of images included within the library.

Conclusion

Whilst our campaign has had a positive impact and will continue to do so into the future, many children and young people are still living with poor asthma control which affects their quality of life and puts them at risk of asthma attacks. We need to continue to put in place a legacy for the children and young people all over the UK who have succumbed to the disease and take action to prevent future deaths.  There are a number of actions that we can take as a health and social care system to make improvements in the way that children and young people with asthma are cared for,  the simplest of which is to keep raising awareness.

Please do share the message about using the right inhaler image, depicting the right person, right preventative treatment, in the right way, with the right technique, at the right time, in the right place.

@SaranelsonRGN
@vivmarsh

Additional references

Nelson S, (2021) Let’s improve media portrayal of inhalers Journal of Community Nursing June p12-13

Guilmant-Farry, Nelson S (2021) Asthma’s image problem.  Community Practitioner Vol 94 | No 03 May/June 26-27

 

Visit the #AskAboutAsthma 2022 campaign page for more content.


Taking control of my own asthma management

By Olivia Fulton, expert by experience and patient advocate

Being in charge of my own inhalers was a scary and exciting time. It meant there would be one less thing that my parents would nag me about every morning and night and as a young person it felt like the nagging was constant. (As an adult I now know that it was due to care and just wanting the best for me!)

Helping a young a person to manage their asthma independently

I recently spoke to my parents to ask them about when they decided I was ready to take more control of my asthma and how they went about doing it. My mum said she found it hard as there was no rule book to walk her through this but she felt very apprehensive because she did not want me to get unwell but at the same time knew I would need to get into the habit of managing my medication and asthma myself.

Mum decided to use school holidays as the time to start this process as she felt that we had the time to dedicate to the process and I would not be at risk of getting overwhelmed between starting a new routine while also juggling the balance of school.

Taking time to understand my asthma

Before we did anything she wanted to make sure I understood my asthma, what triggers it, the way the medication works on my airways and when I needed to take what had been prescribed. Mum again mentioned that there was no real guidance on this as this was before the internet so any information came from personal knowledge through lived experience from other family members and a leaflet from the GP.

She also didn’t want to do everything at once so broke it down to preventer and reliever as it was different things to remember.

For taking control of my reliever inhaler she initially left my inhaler and spacer out on the hall table so I would see it when putting my shoes on and leaving the house. Gradually I remembered to bring it with me more and more. Initially, whoever I was out with would have one with them so if I had not brought it and had an asthma attack I would be ok and would not be without medication.

Sticking to an inhaler routine

Remembering to take my reliever inhaler with me was always easier as it would give immediate effect when I took it.

My mum likened trying to get me to take my preventer inhaler myself without prompting to trying to get my brothers to brush their teeth; no amount of nagging seemed to work. She said she had to try various different things to try and get me to remember. The only time I did remember was when I had to take my lunchtime dose of preventer because it meant myself and a friend got out of class 5 minutes early – and that also meant I would be near the front of the lunch queue!

Slowly but surely after trying different methods I finally managed to remember to take my preventer inhaler. At first it was in the morning, and then latterly I was able to take all doses independently. Mum found putting my inhaler in places where I could not miss them helped. Even though this meant she was still having to remind me, I was becoming more independent and she did not need to verbally ask me to take it.

Even now the habits that she helped me form, I still do today. It doesn’t matter where I am – home, with family or on holiday, my inhaler gets put by the sink next to my toothbrush. My reliever inhaler is always left next to my house keys and my wallet.

Why patience and persistence are key

The above makes it all sound very straightforward but there were many many bumps in the road, arguments and rebelling on my part against what I was being told to do, but this was not out of the ordinary for children growing up.

Reflecting back I am so grateful for the effort and input of my parents to get me independent in managing my asthma as those habits developed still help me to this day. As an adult I now also appreciate the time and dedication it took especially in a time where they were not able to easily get information or support from other parents going through a similar experience.

One of the hardest aspects I found in taking control of my asthma management was making the right decisions when my asthma was not good. As much as I was desperate to be independent in many aspects of life, I found it hard to make independent choices about when to increase my medication – even though I had a personal asthma action plan on the form attached to my peak flow diary. I would never follow the plan independently; I would defer to my parents to make sure I was doing the right thing, not realising that the decisions they made were taken using the personal asthma action plan. This went on for many years and even now as an adult I will still mention to my parents if I am taking any action to help my asthma.

There is no right or wrong way when handing over the reins to a child. What worked for me will not work for everyone. The method that my parents used with me did not work for my brother. I am very routined in what I do, which is what my mum says made it a bit easier for her to get me more independent in my asthma management – but it was the opposite for my brother. She felt like she was starting from the beginning with him. However, thankfully the internet was well established by then and she could gain greater insight from what others were doing.

I asked mum what was it that made her decide to get me more independent with my asthma. She said it was a gut feeling and she just felt I was ready. Everyone matures at different times – she felt I was ready at a much earlier age than my brother. In an ideal world there would be a guidebook to take you step by step through the process.

The key points that helped myself and my parents to manage my asthma

  • Making sure there was always a back-up in the initial stages of independent asthma management so if something went wrong and I forgot an inhaler then I would not suffer
  • Having a written personalised asthma action plan
  • Patience, it doesn’t always go right
  • Knowledge of asthma, what the inhalers do on the airways
  • Imagination to create ways in which I would remember to take my medication without being verbally prompted

Visit the #AskAboutAsthma 2022 campaign page for more content.


Improving accessibility to asthma services in Norwich through school-based reviews

Health inequalities are particularly apparent in childhood asthma. OneNorwich Practices are looking to tackle this by re-thinking how we can make it easier for families to attend their annual reviews and therefore empower optimal self-management. Asthma clinics have been held in 10 schools in deprived areas of Norwich and the positive results have secured funding from the Integrated Care Board (ICB) to expand across Norfolk and Waveney. We have also been shortlisted for a national award for challenging health inequalities. Read on for our initial findings within the targeted Norwich schools and the rationale behind the project.

Background

Evidence suggests that:

  • Emergency admissions for asthma in children and young people are strongly associated with deprivation, with significantly higher hospital admissions in poorer families.[1]
  • However, children from deprived areas are less likely to attend preventative asthma reviews[2]
  • If we can get hospital admission levels from the most deprived decile to match the least deprived, we could save the NHS 8.5 million, a year, in England alone[3]

The National Review of Asthma Deaths, (NRAD) in 2014, highlighted that two-thirds of asthma deaths are preventable, with annual review attendance being a key influence.[4] Self-management including provision of a personal asthma action plan (PAAP) and supported by regular medical reviews, almost halves the risk of hospitalisation, and improves markers of asthma control and quality of life.[5]

However, Asthma and Lung UK noted families reporting significant challenges accessing their surgeries for reviews.[6]

Levy, 2021, also notes, “Sadly, despite the NRAD report highlighting ongoing preventable factors for asthma deaths, the UK’s poor record of childhood asthma care persists with many examples of preventable asthma attacks and preventable childhood asthma deaths”.[7]

If we address these factors, we can reduce the risk of death.

Focus

The heat map below indicates the high levels of childhood asthma associated with deprivation in Norwich[8].

The asthma clinics in schools project was developed based on these principles. We wanted to make it easier for families in deprived areas to attend their annual asthma reviews, and hence trialled holding them in schools. The feedback was phenomenal from both families and from schools.

Findings

Initial response

Families reported challenges with obtaining reviews at their surgery and welcomed the new approach: When the schools initially contacted parents some of the comments were:

  • “Usually attends the GP but can’t remember the last time they went because of Covid restrictions”,
  • “Very pleased as mum feels appointments at GP tricky”,
  • “Great idea as difficult to get into GP surgery”.

Parents were keen to attend and even in the initial school, the uptake of families whose child was on the asthma register was excellent, achieving 81% engagement.

Family knowledge improvement

Self-reported confidence and knowledge in prevention and management of attacks grew significantly post school clinics:

Unmet needs among school staff identified

Following a near miss, (“thank goodness you’re here”) it became apparent that school staff receive minimal training on asthma despite being responsible for 2-3 children per class with asthma. Therefore, asthma training became an additional key role, either face to face or through e-learning and currently each school now receives the Tier 1 Children and Young People’s Transformation Programme e-learning[9] in addition to face to face. Long term, the aim will be to develop “asthma friendly schools” (including those with complex needs pupils) and writing a county wide asthma school policy.[10]

Improved access via school:

Notably, only a third of the families seen had received a review in the last year (and often this was over the phone). The remaining two-thirds had experienced a significant delay in their review, of either up to five years (35%), or they had never had an asthma review (29%). This means 64% of families that attended school reviews had not had an asthma review at their GP surgery in the past year despite reminders, or they had not been invited to the surgery at all. Of significance, was the large volume (25% of families that attended) with some degree of safeguarding input that chose to access reviews through school.

Holding reviews in schools appears to improve accessibility and therefore significantly increase uptake. This is in deprived areas, where uptake in asthma reviews is especially challenging.[11]

Annual reviews, asthma diagnosis levels and asthma control

The lack of annual review invites coincides with a lack of diagnosis:

Not having a diagnosis has implications in terms of asthma codes not being generated and therefore impacts on care provided (including invites to annual reviews) and corresponding poor asthma control.

Inhaler Technique, PAAP and Inhalers / Spacers at school

Of concern was the large volume of children with incorrect inhaler technique:

As we have noted, research suggests annual reviews and a personal asthma action plan (PAAP) half the incidence of hospitalisation. Before the clinics, 81% of children did not have a PAAP.  After school clinics, 100% of children received a PAAP.  Schools also received a copy. Prior to clinics no schools had a PAAP.

Other issues that became apparent were that only 53% of children had their own reliever inhaler at school, and 69% of children did not have the appropriate spacer at school, (eg not at all, or frequently incorrect size: infant spacer for a 9 year old etc.).

The response post clinics from families was very positive:

  • “I think having this appointment is brilliant and gives a fantastic opportunity to talk to somebody about my child’s asthma after not being able to visit the doctors for so long. The lady we saw was amazing and really explained everything clearly and in depth. We all have a much better understanding”
  • “This has been great as I had a lot of trouble getting an asthma nurse and getting any help when I really needed it. There was a month wait!”
  • “I have had asthma for 8 years myself and learnt loads today which didn’t know. At all the reviews I had not been told why to take the brown inhaler”
  • “Myself and my son have both learnt so much today. It’s good to do together and learn together. So helpful and I haven’t had all explained before like this. Very happy”
  • “School should be more aware of asthma ….no one could help when my son had an attack”.
  • “My child used to refuse to use their spacer, but now they know why, they use it”

School response:

  • “We were thrilled with how it went and the feedback from parents has been 100% positive. One parent even commented that it has changed his life already as his breathing is so much better now you have reviewed him and have his asthma properly managed……I would be VERY keen to repeat this next autumn term, so if this continues could we please be involved.”

Future direction

Thanks to funding from the ICB, we are now expanding across Norfolk and Waveney, again using the Health of the Nation 2022 heat maps to guide our focus.

 

And as we close this blog, we share a final response from one child….

“Can you tell me when you use your inhaler?”

“When my ears are sore”.

By Gina Eyles, Children’s Asthma Nurse Specialist
OneNorwich Practices

References

[1] https://www.asthma.org.uk/support-us/campaigns/publications/inequality/ 

[2] https://thorax.bmj.com/content/70/Suppl_3/A202.2

[3] (Kossarova et al, 2017) https://www.nuffieldtrust.org.uk/research/admissions-of-inequality-emergency-hospital-use-for-children-and-young-people.

[4] Royal College of Physicians, 2014, Why Asthma Still Kills The National Review of Asthma Deaths, http://www.rcplondon.ac.uk/sites/default/files/why-asthma-still-kills-full-report.pdf

[5] (Pinnock, 2015) https://rdcu.be/cS3iX

[6] https://www.asthma.org.uk/about/media/news/avoiding-or-delaying-treatment/#:~:text=Overall%2C%20the%20survey%20results%20from,to%20fears%20of%20COVID%2D19

[7] Levy, M. 2021 Risks of Poor Asthma Outcome in 14,405 children and young people in London Primary Care Respiratory Medicine 31 (3) https://doi.org/10.1038/s41533-020-00215-7

[8] Health of the Nation, 2022, Health of the Nation Report, 2022 East of England Childhood Asthma Insights to Impact.

[9] https://www.educationforhealth.org/course/supporting-children-and-young-peoples-health-improving-asthma-care-together/

[10] https://www.healthylondon.org/resource/london-asthma-toolkit/schools/asthma-friendly-schools/

[11] https://thorax.bmj.com/content/70/Suppl_3/A202.2

 

Visit the #AskAboutAsthma 2022 campaign page for more content.