In this guest blog, Molly Kenyon, Peer Leader at West Yorkshire Integrated Care Board, shares her experience of living with multiple long-term health conditions and the importance of shared decision making.
I’m 68, and like most people my health isn’t perfect. Sometimes we cope so efficiently that a stranger meeting us might not notice. What helps us to manage co-morbidities in daily life? I think it’s a mixture of timely treatment, personal resilience, and asking questions.
In adolescence, a Milwaukee brace was built for me to halt a spinal curvature. For 18 months my neck and torso were gripped in metal and leather, removed only for a weekly shower.
This treatment prevented serious deformity and instilled the discipline of daily exercises. Sadly I wasn’t warned about neck weakness after wearing the brace. Managing my own health meant finding additional exercises to strengthen those muscles.
Wider circumstances affect personal health in many ways. A year before my brace was fitted, my sister fractured her spine. Disruption in our family and across the world in 1968 became visible in me as panic about school essays. Adding the brace led to six months away from school and treatment for depression.
My adult life was shaped by the challenge to stand straight and not to hide. Country dancing helps! I’ve learned that for everyone, physical and mental health are woven tightly together.
As patients, we can’t expect health professionals to know our entire history. Every consultation has to include appropriate questions. Health professionals must consider factors beyond the specific reason for an appointment. Patients must dare to ask “Might another element of my health history be relevant?”
My next comorbidity appeared suddenly. Aged 36, I was extremely busy as an interfaith community worker. One evening my GP sent me to hospital with abdominal pain. After emergency surgery, Crohn’s disease was diagnosed.
Managing a chronic illness became part of my life, like a curved spine and a melancholic turn of mind.
Staff in our hospital’s Gastroenterology Unit earned my trust and encouraged patient participation.
Other co-morbidities I’ve lived with for decades are a knee injury and RSI in my wrists. Better advice at the start would have reduced the damage. I didn’t ask enough questions.
If you’d been advising me recently, we’d have discussed a dodgy hip, eczema, and the limitations of cataract surgery. Dancing with co-morbidities requires patients, carers and health professionals to become skilful partners.
There’s a catchphrase I find useful to create mental space for shared decision making: “The answer is the person in front of you.” It reminds me to listen more carefully, to reflect and to ask questions.
Molly Kenyon, is a member of the Strategic Coproduction Group for Primary and Community Transformation and Improvement, and Peer Leader at West Yorkshire ICB’s Steering Group for palliative and end of life care.