In September 2021, Dr Llinos Jones, a respiratory consultant in Mid Yorkshire Hospitals NHS Trust, and her team attended a Spread and Scale Academy in Pontefract alongside around 100 colleagues from the trust.
Llinos and her team’s project was centred on delivering crucial information for patients to manage their asthma in their own language. Llinos is a key member of the Yorkshire Severe Asthma network and runs a Difficult Asthma clinic in an area where around 20% of her patients are part of the South Asian community.
Despite this, information in languages other than English was not readily available. Llinos’ patients in Yorkshire were struggling to understand and manage their respiratory condition, or to know what treatments were available to them.
“I was tired of feeling unable to give equity of access to asthma information in clinic,” explains Llinos. “I felt a moral injury every time I was unable to give my patients the information they needed to help improve or manage their condition in the language they needed.”
In 2011, the UK Census identified that there were nearly 800,000 people living in England who spoke little to no English, and only 65% of this population were in good health, compared to 88% of people who could speak English well or very well. These figures increased by 2% in the 2021 census.
In 2019, Public Health England found that “Respiratory illness does not affect population groups equally and is subject to strong social patterning.” Additionally, asthma-related morbidity disproportionately affects more people from ethnic minority backgrounds, who are more likely to eventually present at Accident and Emergency departments with acute symptoms of uncontrolled asthma.
2021 marked 50 years since Professor Julian Tudor Hart proposed the Inverse Care Law, that states there is an inverse correlation between availability of healthcare and the populations that require it. In Yorkshire, Llinos was working in an indisputable example of this; one she was determined to address.
By combining prescribing data from local GP practices, information about areas of high deprivation and in-depth information about the rates of English spoken overlaid, Llinos was able to demonstrate a clear picture of the resulting health inequity and a link between this and the areas with a high rate of problematic and uncontrolled asthma.
“We had identified this huge equity problem in our area and were sure that a step towards addressing it was making health literature available in not only the languages that people needed but in ways that were the most accessible and appropriate to their needs. To really find out what these were, we had to co-produce the solution with the people most affected by and proximate to the problem.”
The team reported that members of the community for whom English was not their first language stated that alongside the immediate language barrier, they often felt excluded and under-represented in the health literature that is available to them. Much health literature did not visibly represent them, nor did it cover the specific cultural questions that they wished to ask.
“Ultimately, the work became very collegiate. There was a real sense of the NHS and the community coming together to tackle this problem, rather than just us saying ‘you need this solution.’ We decided together that short videos would be the most appropriate and most effective way of conveying the important information we needed to convey. However, they were just solution we were trying to implement. At the time which I became aware of the Spread and Scale Academy, my team and I were still in the process of writing up scripts based on this extensive community work.”
The Dragon’s Heart Institute was invited to deliver a Spread and Scale Academy in collaboration with Mid Yorkshire Hospitals NHS Trust and the Yorkshire & Humber Academic Health Science Network in Pontefract, Yorkshire in September 2021.
“The Spread and Scale Academy came at the exact right time for me. If I hadn’t attended the academy at that exact point, I know that by now I would have burnt out,” explains Llinos.
“Before the Spread and Scale Academy, I don’t think I understood scale. I have never been trained in quality improvement or anything similar; we were just working to solve this problem because we recognised we needed to. The Academy gave the team and me three days of headspace to reflect on where we were and why we weren’t gaining ground with one part our project.”
One of the key lessons of the Spread and Scale Academy is how to identify the core elements of the solution teams are working with, ensuring that they are as simple and therefore adoptable as possible, and driven by a set of non-negotiable values.
“In September 2021, all we had was this prototype and this process really gave me and the team insights that we did not have yet. It helped us recognise what we were actually trying to do, sharpen our minds on why we were trying to do it (we kept asking, ‘so what?’), and allowed us to focus on the parts that were the most needed and were going to have the most impact.
“We left Spread and Scale with a clear plan for our next steps, and ideas about how we would create a grass-roots movement in our communities to launch the videos.”
The suite of video resources was launched the following March and was one of the finalists for a Health Service Journal Partnership award the same month.
“Our refined solution, called Straight Talking, which included a suite of videos in a range of languages fronted by a computer-generated avatar nicknamed Fatima, launched via social media and demand just went boom!”
Within a matter of days, the videos had been viewed thousands of times and the associated social media posts had received engagement from all over the world. To supplement their social media campaign, Llinos and the team engaged with the British Thoracic Society who emailed it to their entire membership as well as community organisations in their local area and beyond.
“We really focused on the grass-roots community approach rather than making this a top-down intervention, and we found that very quickly teams from across the UK were approaching me to use these resources and, in fact, many were just using them.
“One part of the Spread and Scale Academy which really stuck with me was the idea of success as when you wake up one morning and someone you’ve never met is just doing your thing, and it doesn’t matter that they don’t know who you are, it just matters that people are benefitting from the work. That message struck a chord with me and without it, I think we would have worried about losing control of this thing that we had worked so hard to achieve. Instead, we could let go of control and now it’s a nice surprise when I find out our work is being used in another area; I just found out today that teams in Wales are now using it too!”
Recently, Straight Talking has been nominated for an NHS Parliamentary Award , Innovate and Patient Information Awards and Llinos has been discussing the project at a variety of conferences and national meetings, as well as going on to discuss things with the Respiratory All-Party Parliamentary Group in June 2023.
“We’re starting to see an impact locally but want to demonstrate the value of designing solutions with equity at their heart at scale. The Spread and Scale Academy taught us the value of committing to outcome measures that you want to see in the world and I’m thrilled that the University of York’s applied research council team are undertaking an evaluation of this work which will hopefully show the benefits that this has had to patients but also to healthcare systems as we get fewer presentations and acute admissions of people with uncontrolled asthma.
“Our ultimate goal is to try and make health literature universally accessible; it’s morally right to make it as accessible as possible so people can manage their own conditions, but also investing in making self-management more accessible will improve patients clinical condition, meaning they won’t necessarily need to present acutely.”
However, it is the difference experienced day to day in clinic that is most impactful for Llinos.
“Being able to look people in the eye and say ‘I can give you everything I need you to know in your own language’ just changes the interaction entirely. It has this dramatic effect on people; they become less stressed, less tense and so grateful that there is this resource that has been made especially for them.
“I’ll never forget the first person I could do that for. An older Punjabi lady who came in with her daughter. She couldn’t speak English well and couldn’t read or write. When I showed her the videos, she said, ‘thank you, I’m so happy.’
“Treating people like human beings, I enjoy the consultations when I can do that.”
