Llinos2

Improving health equity by embracing diversity

Wednesday, January 13, 2021

Dr Llinos Jones tells us how we can make steps towards true health equity by overcoming cultural and language barriers.

Why it is important to improve inclusivity and access

In my own experience, language and cultural differences can make people’s path to good health difficult. In my locality, I have found that in minority ethnic communities there is often stigma associated with respiratory disease, and misconceptions around asthma engrained in cultural and social customs. Colleagues working in other areas have reported similar issues associated with such communities.

As an example, in certain cultures, people tend to associate cough with infectious disease, not with chronic conditions such as asthma. They therefore avoid social events and public places. I’ve had patients attending my Difficult Asthma clinic who avoid all social and family gatherings, owing to their cough.

I often see patients in my clinic whose first language is not English. We have fruitful conversations, we agree on self-management and treatment plans, but then at follow up I realise something has not gone as planned. Inhalers may have been taken incorrectly, or I find that inhalers have not been renewed after the first month for instance.

I realised as I was setting up the Difficult Asthma clinic that all the information I had to give to patients, such as medicines’ instructions, guidance on inhaler technique and treatment packs were exclusively in English. Up until very recently, I couldn’t provide patients with an action plan in their own language.

Language and literacy need to be taken into account

In tightly knit minority communities and highly monocultural areas of the UK, people can continue with their daily lives without the need to communicate in English for some time. This particularly applies to those that are elderly, unwell or confined to their house or small family circle.

This is not necessarily linked with levels of integration; parallels could be drawn with areas of Spain, where British expats spend most of their time in English-run establishments and shops, socialising mostly within their group, and therefore not needing a native-level command of the Spanish language to enjoy a full and rewarding life.

Broadly speaking, health equity begins with equal access to health. Even when a service or a treatment is made available widely to the population, in the true spirit of health equality, to achieve health equity we need to take one step further, and make sure everyone can truly benefit from the help that their healthcare provider is offering.

Patients with low health literacy are often not identified by health care providers. Low literacy is more common in groups such as those from socioeconomically deprived backgrounds, members of ethnic minorities and immigrants, the elderly, and those with limited education.

Never assume

Disregarding the different levels of health education or cultural differences, we cannot assume that everyone’s grasp of written and technical English is good. In not appreciating these disparities, we may be missing the opportunity to provide health equity. The NHS is here to look after patients, irrespective of whether English is their first language or how well they can read and understand it.

As Respiratory Clinicians, we frequently expect our patients to self-manage their conditions, yet this is much harder when there are low levels of health literacy, and a paucity of appropriate resources.
We’ve had access to education, but the same cannot be said for many of our patients.

Likewise, extremely intelligent and articulate patients that attend my clinic cannot read, for a variety of reasons. Patients may not readily volunteer this information, but I feel it’s important to ask if possible.

Some of us may have become more aware of issues surrounding poor literacy when conducting telephone consultations over the pandemic, as patients struggle to read out their medication list, or inhaler names over the phone. I’ve known for a while that the average reading age in my locality is 7, but the magnitude of the problem has really hit home these last few months.

Improving access to health with multilingual and multicultural education

I do feel that all individuals deserve good healthcare. I realised that it would be more effective to change things at source, rather than trying to fix everyone’s situation one by one. That’s why, almost four years ago now, I began campaigning and working to get the information we already have, translated into as many languages as possible, into different media, and to get this information into the communities that need it.

I also appreciate that it is important to provide something culturally relevant too, and to try to address people’s concerns, which may be based on deeply held traditional views. I run a Difficult Asthma clinic in an area where up to 20% of my patients are from the South Asian community. In fact, not far from the hospital, there’s an area where 93% of residents identify as British Asian Muslims.

When I first spoke to Respiratory Futures, the project was still moving quite slowly, and I kept running into a variety of barriers. However, I had some really productive discussions after the BTS Winter Meeting. Covid-19 and the Black Lives Matters movement have also shone a light on health inequalities, which has also moved the project forwards. Things have moved on at a exciting pace just recently.

Things are now taking off

I have approached several pharmaceutical companies to make my case over the years, sat in a number of meetings, had many conversations and discussions concerning the difficulty in communicating with patients, and the need to provide equal opportunities to access healthcare.

I was extremely fortunate to be put in touch with Dr Neena Lakhani, who shared with me her research in the South Asian community in Leicester showing that translating a single asthma pamphlet into one foreign language was not likely to make a huge impact. However, it was a start, it showed that it could be done and demonstrated proof of concept.

Things started to progress slowly at first. One pharmaceutical company agreed to translate biologic information and inhaler pamphlets into different languages, which they agreed to use to dub their educational videos on inhaler use and technique.

Another company agreed to translate their home care packs for asthma biologics into different languages. They’ve also agreed to work with us on a variety of different videos, using QR codes to access them from smart phones.

This will not only encompass inhaler guidance, but also explaining things from a patient’s perspective we hope as well.

Some examples of these educational videos are here.

Making sure change is permanently embedded is crucial

It’s felt recently as if there’s been an attainment of some sort of critical mass, and now several pharmaceutical companies have started to work on their patient information material in different languages and formats.

A company I sat down with recently has now built a clear path for the translation of their material in their operating procedures. With that change in place, not just existing but future materials relating to their medicines can be made available in a plethora of languages.

Whilst going through this process, companies realised that they were marketing their products in several countries without having appropriate material in their main or minority languages. Consequently, the great news is that new educational and informative material produced can be made available worldwide, enabling the same minority populations across the globe better access to information.

There is still more work to be done

As I mentioned, it’s not just about the language; culture and traditions play an important role too. I have been working on this in parallel to the translation work. I have been looking at what has already been done, searching for a model that could be adapted. What I found locally was that Public Health colleagues who were working within the cervical cancer screening programme had trained a number of “health champions” from minority communities to explain the facts and dispel the myths around it.

We’re also starting work on some storyboards for graphic medicine sheets, for those who can’t read at all. We felt this would be useful in explaining what asthma is, how to use inhalers, and potentially for supporting Maintenance and Reliever Therapy regimens as well.

Graphic medicine has been used for other conditions, but we’re really excited to start developing resources for patients with asthma using this media. We hope to take the new resources to focus groups, not only for those from minority communities, but also for patients with learning disabilities.

My next step is to see how I can get a similar group of champions for asthma trained, so that they can teach the member of their communities from within. This model worked well for cervical cancer, and my hope is to replicate this model and run a pilot.

I’m also exploring means of recruiting a specialist nurse, funding permitting, to work alongside the health champion to target areas where there are high levels of SABA overusage, and acute exacerbations requiring oral corticosteroids.

Looking at the future

New and exciting developments are happening every week now, the pace of change has accelerated so much. Thankfully, it’s coincided with my youngest child starting school, so it keeps me out of mischief on my one day off a week. But it is all worthwhile, seeing some results, and feeling that finally things are starting to move in a positive direction.

The next steps also include working alongside Respiratory Futures and Asthma UK to share the multilingual resources now available, and publicising their availability within not only secondary care, but also primary care and other countries.

My sincerest thanks to everyone who has been supportive along the way, especially my colleagues in the Yorkshire Asthma MDT, and in particular Professor Ian Sabroe, and Professor Dinesh Saralaya.

I’d be delighted to hear from anyone who has any comments or questions, or who may have some resources that they wish to share.