Alan* has experience of shared decision making in his own right but also as the person who makes health and welfare decisions for his mum who has advanced Alzheimer’s disease.

Alan, who’s in his mid-40s, lives in the north of England, and works for himself, says his experience of making treatment decisions with healthcare professionals is mixed.

Pushed into a decision

Alan has Becker muscular dystrophy (BMD), a rare genetic condition that affects the heart muscles. When Alan had to make decisions about his treatment, his doctor gave him lots of time and he was under no pressure to decide what to do. His doctor was well-informed about his medical history and asked him what he was looking for from the consultation.

“Every step was explained, and I felt like I was part of this.”

However, when he saw the cardiologist to discuss problems with his heart, Alan felt pushed into agreeing to take ACE-inhibitors, widely used medicines that help relax the veins and arteries to lower blood pressure, which he wasn’t keen to do but complied with anyway.

“It felt less of a shared decision, more of ‘this is what’s best for you’”

Deciding for mum

Alan has lasting power of attorney for health and welfare decisions for his mum, who lives in a care home. He says getting his mum to sign the lasting power of attorney while she was still able to, was one of the best bits of advice a doctor ever gave to him.

Using the authority has meant he’s been able to discuss with the care home the issue of a do not attempt cardiopulmonary resuscitation (DNACPR) notice for his mum. Alan was initially against the idea, but when it was fully explained in relation to his mum’s situation, he agreed to a DNACPR notice for Mum, believing this is in her best interests.

“I felt I was involved in that decision and in difficult circumstances I made the best decision I could.”

Alan’s tips for better shared decision making

For patients and carers

• Research the health issues so you feel confident talking to doctors
• Prepare questions for your consultation in advance
• Listen carefully to what the doctors tell you and may be make written notes.

For healthcare professionals

• Try to understand things from the patient’s point of view and the impact decisions made could have on their life
• Ask what the patient is looking for from a consultation
• Explain a diagnosis, condition, or treatment in terms the patient understands.

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

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