https://doi.org/10.1136/bmj.l6018 (Published 13 November 2019)
I’m writing to highlight another article in the BMJ written by a patient about goal setting. The article is very simple, about a patient raising the issue of taking up running in an asthma review. It is also very deep, and considers the difficulty of breaking into the nurse’s routine review to raise the issue.
The Quality and Outcomes Framework included many items on a checklist to cover in an asthma review, and even though we are post-QOF in Scotland, we are still using our QOF template.
Some of the suggestions for patient participation made by the article are already in use. For example our asthma nurse makes good use of the self-assessment tools on the Asthma UK website.
I think that the real challenge to our practice is to encourage patients to set their own agenda before their appointment, and to make that appointment a space where the patient’s goals are at the forefront. I plan to take the article in to our practice as part of our preparation for ‘House of Care’
As the patient writing the article says: ‘These appointment had never felt like a two way conversation where I had the space to ask as well as answer questions’. What a wake-up call to all of us who run chronic disease management clinics. This patient felt apologetic raising her goals at the consultation, and this was done at the end of the time with the nurse.
I felt so strongly that the patient goals should be the first, biggest thing about chronic disease management reviews that I took the article in to work, and gave it to our LTC nurses to read. We need to come up with a new language and way of that invites these conversations, that creates this teamwork between clinician and patient naturally.
By Kathleen Jamie from Frissure: Prose Poems and Artworks (2013)
At midnight the north sky is blues and greys, with a thin fissure of citrine just above the horizon. It’s light when you wake, regardless of the hour. At 2 or 4 or 6am, you breathe light into your body.
A rose, a briar rose. A wild rose and its thorned stem. What did Burns say? ‘you seize the flo’er, the bloom is shed’.
To be healed is not to be saved from mortality, but rather, released back into it: we are returned to the wild, into possibilities for ageing and change.
2016 – the year I went to the International Forum of Quality and Safety in Healthcare in Gothenburg. There were many memorable moments. It inspired a passion in me for showcasing quality improvement in primary care and in Scotland. These ambitions are still to be realised.
It also took me to Jönköping where I visited Qulturum, an amazing resource for bringing healthcare improvement ideas into practice. Here is where I first saw a description of a citizen’s jury, and a reasoned explanation for why they are valuable.
Before this, I had only seen single patients being asked about single issues. These lone lay people have attended meetings, to represent all patients, all demographics, all ethnographic minorities, and orientations. The agenda has been set by the medical establishment, and the lay person has been, at best, a commentator. Their participation has allowed organisations to tick the box on patient participation.
A Citizen’s jury changes this. First of all, a group of people get to debate the issues. This gets around the need for one person to represent all demographics. Secondly, this is more than a poll. The jury is provided with facts, as well as well reasoned and possibly opposing expert opinions. Members of the jury develop knowledge about a specific policy area. They may call expert witnesses to present evidence relevant to the issue being explored. Their viewpoint is therefore both independent and well-informed, and not fixed to one demographic.
The BMJ published an analytical article examining how citizens’ juries can review current medical practice. The article looks at the role of these juries in evaluating acceptability and legitimacy of screening policies. Relevant examples are provided.