Summary
A multi-stakeholder group, chaired by a person with diabetes, developed the ‘Language Matters’ document on the appropriate use of language in the care of people with diabetes. It has been published in India and Pakistan, and will be used in Wales, Brazil, Argentina, Chile and Spain. Another, focused on obesity, is in development. NHS England uses it in the national Diabetes Programme and junior doctors use it as part of the Young Diabetologists and Endocrinologists Forum (YDEF) development programme. A new document, focused on social media, aims to reduce anxiety for people with diabetes, who are more vulnerable to COVID-19.
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Method
NHS England, in partnership with Diabetes UK, established a working group, comprised of people with diabetes, academic and professional groups and independent organisations, to address how refining the use of language could lead to better clinical outcomes and quality of life for people with diabetes. The stakeholders included Diabetes UK, TREND Diabetes UK, JDRF, Association of British Diabetologists and Young Diabetologists and Endocrinologists Forum. Each of these participated in the development group and endorsed the final document.
The work had two strands. The first was a scoping study to review existing research that could increase understanding of the role of language, as well as identify gaps in knowledge, and inform the second strand. The second strand was the development of a position statement on language in diabetes care.
The practice document or position statement highlighted the need for careful use of language and gave positive practical examples of how language could be used. The practice document was developed by a group chaired by patients and was adopted as best practice by NHS England. Challenging behavioural aspects of care, especially where practice is ingrained over decades, can be difficult, so it was important that the evidence was clear, well presented and that the final document was usable and helpful, as well as highlighting where people could do better.
The work commenced late in 2017 and was published in Spring 2018. The aim was to achieve a national publication that enabled all stakeholders to sign up to the shared ethos and content.
There were many iterations of the document before the group was satisfied that it achieved its purpose of highlighting best practice and improving the way care was delivered. Throughout, the patients played an important role in leading, challenging and keeping the process on track.
Results
The position statement and set of guidance on language use in clinical encounters for people with diabetes has been endorsed by NHS England and Diabetes UK, Diabetes on the Net and the Juvenile Diabetes Research Foundation, circulated to all Clinical Commissioning Groups, and used as a tool in nurse professional development.
The position statement was circulated for implementation to all UK NHS Clinical Commissioning Groups. It was the most downloaded document from the NHS England website in the week of launch (over 1,000 downloads) and, at the time of writing, has been downloaded 4,386 times. Direct links to the download website sent specifically to the CCGs (representing 3,138 health care professionals) yielded a further 102 document access requests. It was published, along with a critical review of the literature, in the journal Diabetic Medicine, which reaches 6,600 institutions. Both of these papers were the most downloaded from the journal issue (more than twice as many downloads as the average).
Since release, the position statement has been evaluated by HCPs via a survey, circulated via twitter, NHS England and nurseeducation programmes. This demonstrated that (of those who completed the survey, 90% of whom were front-line nursing staff) 98% were aware of the position statement, 78% had downloaded the document and 82% said they had found it useful. The most common ways it was reported to have been used were as guidance for staff, discussion in team meetings and to improve communication. As has been widely reported, the language used in clinical encounters has an important impact on psychological wellbeing.
The position statement formed the basis for an educational ‘challenge’ for the training and education organisation ‘Successful Diabetes’. The hits on the main page reached nearly 600, with the number of people taking the challenge reaching just over 330. The position statement was circulated through attendees’ conference packs at the 2020 annual Diabetes UK conference for health care professionals (March 2020).
Sustainability and Spread
Key to the sustainability of the ‘Language Matters’ initiative in the UK is the fact that patients have ownership of the agenda. From the initial development group and beyond, the patients have spoken at various international conferences about this topic. NHS England has adopted the document and it influences its strategic work. In addition, the various diabetes charities have adopted and endorsed the document.
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