Shared decision making for long term health conditions

Joanne*, a working mum of two in her 40s, has regular contact with healthcare professionals because she has axial spondyloarthritis, a type of arthritis distinguished by back pain, and severe asthma.

Because of her responsibilities to her family and her job, Joanne tries to ensure that hospital appointments and treatment, fit in around her work and family. For her, shared decision making enables her to plan and feel in control of her life.

“Me being in…control, or at least being involved in the plan properly, is really, really important to me now”

Catching COVID

During the pandemic, Joanne’s health deteriorated, she developed severe breathing problems and caught COVID-19, but she but didn’t want to go into hospital.

Together with her medical teams, she agreed to manage her infection via telephone and video consultations. Doctors ‘admitted’ Joanne to a ‘virtual COVID ward’ and was treated at home by the asthma and COVID teams. Joanne agreed to the plan with the doctors, who provided with equipment to monitor her oxygen levels and blood pressure and reported these twice daily. She also had exercises to do at home.

“For somebody like me who has really frequent interactions with the NHS for all of my issues being given that opportunity to not just have a say…but for them to say ‘so, what do you want, what do you want to get out of this, what’s your goal for the next six months?’”

Managing heavy periods

Joanne also has adenomyosis, where the lining of the womb is found deep in muscle of the womb, and this made her periods very heavy and painful. She and her gynaecologist used shared decision making to decide the best course of action. They discussed three difficult options: do nothing, artificially induce the menopause, or have a hysterectomy.

Joanne chose to induce the menopause, but this didn’t work, leaving her with a choice between doing nothing or the hysterectomy, with her doctor advising her to have the latter. The gynaecologist explained her reasoning and enabled Joanne to make the choice.

“She understood that I needed to understand the good, the bad and the ugly to make an informed decision, especially with something so life changing as a hysterectomy…”

When shared decision making doesn’t go well

Although Joanne has had recent positive experiences with shared decision making, over the many years she’s interacted with the health service, Joanne says she’s often felt like a widget, moving along a factory conveyor belt. This had the effect of undermining her confidence, leaving her unable to speak up for herself.

Joanne describes an occasion when she had chest pains and breathing difficulties far worse than she’d ever experienced before. But at A & E she was told she wasn’t having a heart attack and to see her GP. Her GP, however, thought the situation had justified specialist care.

In this situation, Joanne found it was difficult to “fight my own corner” and while the situation did resolve, with Joanne getting treatment that has helped enormously, the process to get diagnose and treatment had none of the characteristics of good, shared decision making.

“You almost sometime feel dehumanised, and if you speak up for yourself you tend to be, you are an ‘attention seeker’ or you are being awkward, and that’s not the case, but I want to live, I don’t just want to survive. I want to be able to have a job. Just because I’ve got these issues doesn’t mean I shouldn’t just have to accept, ‘well, these are the appointments you have and you are just going to have to fall in line and do them’.”

Joanne’s tips for better shared decision making

For patients  

• Take written notes or notes on your phone into consultations with doctors to avoid being side-tracked and forgetting important questions to ask
• Remember your doctors are human too, and current difficulties have affected them as well, and not to take one’s frustrations out on them.

For healthcare professionals  

• Don’t treat patients as if they are on a manufacturing production line
• Be aware of the impact that COVID has had on people with multiple, long-term health conditions
• Knowing the patient as a person is what makes SDM work.

Spaces are still available for event on 24th November, Shared decision making: a reality for everyone? You can book your place online.

*Name changed to protect privacy

Joanne's story is part of a project funded by the General Medical Council and published here with the GMC's permission.