EPAP patient ambassadors Amanda and Toni (who live in England and Scotland) tell us about their experiences of being involved in the development of clinical guidelines for eczema and asthma
Amanda Roberts: how I got involved in developing NICE Clinical Guidelines: Atopic eczema in children (England, UK)
I have had eczema, hay fever and asthma all my life. It has hospitalised me but I have never allowed it to define me. But it was a different matter when I experienced as a mother the impact of these conditions on loved ones. Both my boys have eczema, hay fever and asthma. My youngest also has anaphylaxis. In particular, because of their eczema, we became frequent visitors to the children’s dermatology out-patient department. One day I noticed a poster saying they were setting up a support group for carers of children with eczema. That was 25 years ago and I am still helping run that group. But now it is web-based and we help people all around the world. We have over 6300 followers on twitter.
Through the group I heard that the National Institute of Health and Care Excellence (NICE) in the UK was going to produce clinical guidelines for the treatment of childhood eczema. Amazingly my application to be on the group that developed these guidelines was successful and I was one of two “patient” voices for that guideline committee. Others on the committee were dermatologists, general practitioners, nurses and pharmacists, all supported by an administrative team. We met one day every month for two years and considered the current evidence for every aspect of management of the condition.
Not only was the guideline supported by a small team of researchers and administrators, but NICE works with what they call “lay people” (patients or carers) on all their guidelines, so there was support for me too. Training at the start, so that I could understand some of the way that they categorised evidence for instance. Media training towards the end of the process when they were looking to publicise the resulting guidelines.
For me, it was inspirational to be with enthusiastic, knowledgeable and caring health care professionals. Frustratingly, not all health care professionals are so interested in eczema. And the guidelines are aspirational not mandatory. From that first work with NICE, and my steep learning curve of technical terms, I have gone on to do other guidelines, research funding panels, standards and even co-applicants in funded health research projects.
Further reading: NICE Clinical Guidelines - Atopic eczema in children (CG57)
Toni-Latimer Simpson: my involvement in the SIGN guideline for Asthma (Scotland, UK)
In 2016 when receiving my usual newsletter from Asthma UK (a national charity), I saw that Healthcare Improvement Scotland were looking for patient advisors to become lay representatives on a Clinical Guideline group looking at the SIGN Guideline for Asthma. SIGN stands for The Scottish Intercollegiate Guidelines Network and they develop and disseminate national clinical guidelines to improve healthcare for patients in Scotland.
Being a patient with asthma myself, I look for new guidance around how to support myself, my family and how to communicate effectively with healthcare professionals when discussing my disease. Also, as I work with healthcare professionals as part of my ‘day job’ in my role as an eLearning Advisor to the School of Pharmacy and Life Sciences at Robert Gordon University in Aberdeen; I felt that it was important that these guidelines had patient input to ensure they are “fit for purpose” for both patients and professionals.
I had a lot of support from Asthma UK who helped me to write the application to become a lay reviewer and I was successfully appointed to the team of lay advisors. Our first task was to transform their patient leaflets for both adults and parents of children with asthma, which accompany the guidelines, into something that was easier to read and understand.
We received training as a group on how to access and read the guidelines as well as on adapting the patient leaflets. We went through the original documents and highlighted any inconsistences and ensured they were user-friendly.
Now, we are in the process of updating the clinical guidelines and this has required us to look at the guidelines to ensure they are up to date and cover what we hope the clinicians should adhere to when discussing asthma with their patients.
We meet again soon in London to discuss our findings and as patients we have been invited to attend to ensure that the patient voice is heard and taken into account.
Overall, my experience has been a good one and I felt the clinicians welcomed our input and insight. Public/patient involvement is a very important part of research and it is hoped that in the future more patients are involved in these areas to bring an important insight in to the guidance of people who actually live with the disease.
Working on the patient information booklets brought me many benefits too, as it meant my name became well known in the asthma community and since I am involved in many other projects, I began to get to know the “usual faces” and to feel more at home.
As with anything that requires input as a patient representative, there can be challenges and I found there were times when I was unable to attend meetings due to my ill-health. Another challenge I faced, is that although my paid employment work is extremely supportive of me taking part in these projects, sometimes I had to ensure that my work took priority.
Overall however, I feel that my impact has been worthwhile. Although the clinicians are subject experts in the field of asthma and lungs, we are expert in being the person living with the condition and sometimes you do have to wonder if they are just favouring us to keep us quiet. I do hope not.
Further reading: SIGN guideline for Asthma (SIGN 153)