We’re sharing this case study as some of the young people who have been brought together by Public Health England (PHE) to write the government guidance on coronavirus for our age group. This ensures young people like us have a voice, and are included in the conversation.
If young people’s specific needs aren’t considered when guidance is written, then there is greater chance they may not understand, that they may be accidentally breaking the guidance, and their health could be at risk. Where guidance specifically for children and young people does exist, it is often aimed at parents – which we think forgets that young people are just as capable of finding and reading guidance as anyone else.
So, who are we? Well, we’re youth and health ambassadors from across England, who are already working with organisations like the #iwill campaign and the NHS Youth Forum. We have a shared passion for youth social action, the NHS, and young people’s access to quality health services in the UK. We’re already shaping campaigns and services, but now we’re using our experiences to adapt the guidance written for coronavirus.
So why was guidance for young people needed?
I’m Seren, I’m 24 and Head of Engagement at a charity called CATTs (Cancer Awareness for Teens & Twenties), a member of the NHS Youth Forum, and a First Aider for St John Ambulance with lived experience as a patient in the NHS.
Living through a global pandemic is something new for all of us, and it’s equally as scary too. It’s important we all have resources we can turn to, helping us to cope and change our lives accordingly within this period. But the general guidance written isn’t always suitable for young people. Sometimes the language can be difficult to understand, like the use of new jargon words, or it might not mention things that are important to us as young people.
That’s why PHE brought together a group of eight youth representatives (including us), who have extensive personal experiences of the health system in the UK, to shape new guidance which is easier for young people living through the coronavirus pandemic to understand.
I think I can speak for all involved in this project in saying that we are thankful for the opportunity to include our age group in this discussion. By involving young people like us in shaping and writing guidance for our peers we can apply our own understanding and experiences to ensure it is suitable and can be understood. We have also highlighted important issues like mental health, and the work of young carers. If you make it right for young people, then you can make it right for everyone.
Writing “Shielding” whilst shielding
I’m Emma and I’m 19. I am a member of the NHS Youth Forum with lived experience as a patient in the NHS. I am currently having to shield because I have had a kidney transplant.
Alongside everyone social distancing, there are lots of young people having to shield because they are classed as clinically extremely vulnerable.
Although many may think it is only older people having to shield, there is a large group of young people staying inside until June 30th to protect themselves. As someone who is having to shield myself because of my kidney transplant, it was great to be able to speak to a group of young people once a week as it was something to look forward to, get dressed and put makeup on for, and be able to share how I was feeling.
Young people having to shield are having to deal with issues that are the same, but also many which are different, to the rest of the population who are shielding. This includes having to study and potentially living away on their own at university. Another issue particularly facing young people who are having to shield is seeing what everyone else is doing on social media.
It can feel very lonely and frustrating seeing other young people decide to spend lockdown learning new skills or being super productive. It can also be difficult seeing some people not take the rules as seriously as they should – but this doesn’t mean that all young people should be stereotyped as “rule breakers”.
By creating the guidance, not only have we created something that is easier for young people to understand but hopefully, by using our own expertise, we can indicate to the government and other leaders that the majority of young people are respecting the guidelines and following the rules.
What steps did we take?
I’m Sophia, I’m 19, and I’m a mental health activist with lived experience. I am the Diversity and Inclusion Lead for the Think 4 Brum Youthboard, an #iwill Ambassador, a Diana Award 2019 recipient and the West Midlands Combined Authority Mental Health Super Star for 2020.
To begin with, we analysed the “Easy Read” guidelines as a group using a shared online document. This allowed all of the health ambassadors involved to make comments on what worked and what didn’t from the perspective of young people. We then made suggestions on what would be beneficial for youth guidance specifically, from changing particular words to reframing the tone of the piece. There were so many ideas!
We then split off into a smaller writing group. We worked together to make changes to the original guidelines, ensuring that youth voice was at the forefront of the message and thus, changing the rhetoric of the piece. We recognised that the voice of young carers was missing, so we included some information specifically for them, informed by the young carers we work with within the organisations we represent. We also introduced youth spaces to the guidance and signposted to relevant organizations and charities for further information.
After some in-depth discussions via online video conferences, we realised we needed to contextualise certain aspects of the guidance. As young people ourselves, we felt that some of the information was too vague for us to fully comprehend, leaving us feeling confused and overlooked. We combatted this by changing the language used, for example we used “unwell” instead of “poorly”, as we felt the latter was patronising. We also realised that young people may have different perceptions of what 2 metres looks like, so we translated this into something that could be visualised easily “Three steps for most people, three big steps for younger people.”
Editing and sign-off
I’m Sonia, I’m 21 and a member of the NHS Youth Forum. I also advocate the discussion of organ and tissue transplantation at events for NHS Blood and Transplant in my role as a Tissue Ambassador due to having lived experience and receiving a heart valve myself.
Once we had collated all of our suggestions from the ‘easy read’ version of the guidance, it was time to turn it into something that would be beneficial for young people.
I took on the role of working with staff from PHE to edit the guidance together. This process included implementing the suggestions of all the other members of the working group into something that was concise, well-articulated, and clear for our readers. Once we had turned a document that once was overloaded with comments and suggestions into something that would be able to be put on the government website, we cross checked each set of guidance to check for any mistakes and then it was time to send them on for sign-off.
This turnaround was quick, and editing happened overnight to ensure that the guidance could go through to the right people before it was published. The sign-off process ensured that any medical discourse or rules that we had added or changed within the guidance was correct, and also allowed members of PHE to add in anything that was missing. The guidance went through PHE, doctors, lawyers and 10 Downing Street!
One thing we’re particularly proud of is that some of the changes and additions we suggested for the young people’s guidance led to changes being made to the adult guidance! Once all the relevant bodies were happy with what we had written it was ready to go onto the gov.uk website. Both of our guidance pieces can now be found published as an official piece of government guidance!
At this challenging time, young people need so much more than just this guidance. It’s important that the decision-makers properly engage with young people to answer their questions and hear their concerns. Although our job was not to change government policy, we’re glad that we were able to adapt the guidance, hosted on gov.uk, to be youth friendly in language, context and tone. As far as we’re aware, this is the first time young people have been able to play this role – but it shouldn’t be the last. We’ve shown it can be done. We hope this provides a starting point for the UK Government to consider the specific challenges young people face, how to share vital information with us, and how to make sure our voices are heard in shaping decisions that impact our lives.
Note on updates to the guidance, and devolved guidance:
Since this blog was written, the government have launched new “Stay alert and safe” guidance which applies only in England. The youth guidance writing team came together to redraft this new guidance to make it suited to a youth audience, and it was launched on 26th of May. Whilst the “Social distancing” guidance is now titled as “Withdrawn” it is still available to read on the government website.
The “Shielding” guidance remains relevant to young people in all four countries of the UK.
For country-specific guidance, visit the following sites: Scotland, Northern Ireland, Wales (not youth-specific).