Throughout June, we are shining a spotlight on living with long-term conditions #LivingwithLTCs, sharing blogs that include relevant evidence and personal reflections. The series will also include a discussion on Twitter about the impact language can have on people with long-term conditions. More details on how to get involved can be found below. Featured Image: ‘Onwards’ is by Shanali Perera*.
“What does it mean to be diagnosed with, and to live with a long-term condition? A long-term condition is just that. A condition that you are stuck with long-term. It’s incurable. It affects your quality of life and it isn’t going to go away. It is something that you have to learn to live with for the rest of your life (or until a cure is found). It doesn’t just affect you – it affects your family, friends and those around you too. Before I was diagnosed with my long-term condition… I had no idea of the daily challenges, physical and emotional, involved with living with such a condition.” – Angela, diagnosed with Parkinson’s disease
Angela is one of around 19 million adults living in the UK with a long-term condition (ONS, 2020), along with 1.7 million children (NICE, 2020). That number is rising and, increasingly, people are living with multiple long-term conditions, with more than one in four adults in England living with two or more (NIHR, 2021).
As Angela describes, long-term conditions are physical or mental health problems which cannot currently be cured and require ongoing management, through medication or other treatments, over years or decades (NHS Data Model and Dictionary for England, 2021).
On average, people living with a long-term condition spend just a few hours per year with health professionals. The rest of the time they are managing day-to-day life on their own or with loved ones – caring for themselves or ‘self-managing’ (NHS England, 2020). They face many challenges along the way. For example, having to deal with complex symptoms, medication regimes, lifestyle changes, and disability – often with huge impacts on daily living and quality of life. Globally, long‐term conditions such as cardiovascular diseases, diabetes and chronic lung diseases are among the leading causes of death (World Health Organization, 2020).
The Five Year Forward View, in which NHS England and its partners set out a vision for the NHS, states that “long term conditions are now a central task of the NHS”. It goes on to say that “caring for these needs requires a partnership with patients over the longer term rather than providing single, unconnected “episodes” of care.” The content of our series focusing on this vital topic has been shaped by a number of people with long-term conditions, through their words and their art. We are very grateful to them.
Whether you are someone interested in, or affected by, long-term conditions, or you work with or support those who are living with long-term conditions, we hope that you find the blogs in this series thought-provoking and informative. The blogs have encouraged us to reflect, and we hope they do the same for you.
Coming up on the blog
Whenever we plan a special series of blogs, we have to make difficult choices about what we do, and don’t, include. There are many long-term conditions which aren’t featured in the blogs, but the blogs we have, while focusing on a specific health condition, often have much broader implications and themes. For example:
- The importance of patient involvement in research and how better care can be shaped by the voices of those living with long-term conditions
- What individuals living with long-term conditions would like health professionals to know, and sources of support they have found helpful
- The impact that language can have on how people experience conditions and feel about them day-to-day
- The importance of research when there are multiple treatment options, but genuine uncertainty about which is best for patients
This Friday we will have a blog on antidepressant withdrawal by Mark Horowitz, author of a recent Cochrane Review on approaches to stopping long‐term antidepressants in people with depression or anxiety, who said that “although I had completed a PhD in the effect of antidepressants on the brain at the world’s leading psychiatric research centre, when it came to stopping an antidepressant for myself I had no idea how to do so…”
Next week our focus is on long-term conditions in pregnancy. Rachel Plachcinski and Ngawai Moss blog about the lack of evidence for planning pregnancy and maternity care for women with two or more long term health conditions, the particular challenges faced, and the MuMPreDiCT research project that is working in this relatively uncharted territory. They explore women’s experiences through their pregnancy journeys: identifying challenges, gaps in understanding, and what matters to them during pregnancy when living with long term health conditions. In a second blog on pregnancy, Emma Doble reflects on her pregnancy journey as someone with Type 1 Diabetes.
On 15th and 16th June, we have a two-part blog in which Emma Doble and our Cochrane UK Consumer Champions, Brian, Ceri, Genna and Olivia share their perspectives on living with long-term conditions.
Later on, Anne Cooper, a person with Type 1 Diabetes, Bob Swindell, a person with Type 2 Diabetes, and Cathy Lloyd, Professor of Health Studies at the Open University, will explore the impact language can have on people who live with a long-term condition, including helpful tips for healthcare professionals for choosing helpful and appropriate language. On June 22nd, we invite you to join us (@CochraneUK) on Twitter to share your perspectives on language use, as we explore some of the questions raised (more details below).
Are ‘biologics’ perhaps one of the greatest medical advances this century? Our Senior Fellow in General Practice, Robert Walton, ponders this and discusses the evidence for these drugs for treating arthritis.
At the end of the month, we will have a blog discussing a new clinical trial exploring whether hearing aids or cochlear implants are better for adults with severe hearing loss. Written by Dr Adele Horobin, Patient and Public Involvement and Engagement Manager at the Nottingham Biomedical Research Centre, the blog will also include comments from members of the public and patients who are helping to shape the trial.
Join us for a tweetchat on Language Matters
We will be hosting a conversation on Twitter on Wednesday 23rd June at 20.00 BST on the use and misuse of language when talking about long-term conditions. We will be discussing these questions:
- What language used to talk about a long-term condition do you find problematic and why?
- What alternatives do you prefer and why?
- What impact does language used, positive or negative, have on you?
- What can we do, individually and collectively, to change problematic language?
- What advice and guidance is there to help health professionals around language use?
Join in using the hashtag #LanguageMatters and tag @CochraneUK. We’ll also have a blog reflecting on the tweetchat.
Selena Ryan-Vig and Sarah Chapman have nothing to disclose.
*Featured Image: ‘Onwards’ (2020) is by Shanali Perera, a contemporary artist, educator, activist, retired Rheumatologist, living with Vasculitis. She works across the intersections of art, health, medical education and patient support: https://www.changinglanes.me/
Read all of the blogs in our ‘Living with Long-Term Conditions’ series.
Join in the conversation on Twitter with @CochraneUK and @SarahChapman30 leave a comment on the blog.
Please note, we cannot give medical advice and do not publish comments that link to individual pages requesting donations or to commercial sites, or appear to endorse commercial products. We welcome diverse views and encourage discussion but we ask that comments are respectful and reserve the right to not publish any we consider offensive. Cochrane UK does not fact check – or endorse – readers’ comments, including any treatments mentioned.