Reflection: Empowering a Patient to Make Their Own Healthcare Decisions

Submitted by: Anonymous - Learning Disabilities Nurse, Community Setting

What was the nature of the CPD activity and what did you hope to learn from it?

I was supporting David (pseudonym), a 28-year-old man with a learning disability who lives in supported accommodation. David needed to decide whether to have a minor surgical procedure to remove a troublesome cyst. His support workers and family were keen for him to have the surgery, but David was anxious and kept saying 'I don't know' when asked about it.

The surgical team had explained the procedure to David, but I wasn't confident he'd fully understood the information or felt empowered to make his own decision. There was a risk that he might simply agree to the surgery to please others, rather than making an informed choice based on his own wishes.

Through this experience, I hoped to learn how to support people with learning disabilities to make informed healthcare decisions, adapt my communication to meet individual needs, and ensure David's voice was heard and respected in his own care.

What did you learn from the CPD activity?

I learned that capacity is decision-specific and time-specific. Just because David needed support with some aspects of his life didn't mean he lacked capacity to make this healthcare decision. I needed to presume capacity and provide the right support to enable him to decide.

I learned the importance of adapting information to meet individual communication needs. I created a simple visual guide using pictures to explain what the surgery involved, what would happen on the day, and what the recovery would be like. I also used a 'talking mat' with symbols for 'good things' and 'worrying things' to help David express his feelings about the surgery.

The experience taught me to take time and not rush decision-making. I had three separate conversations with David over two weeks, giving him time to process the information and ask questions. This patient approach was crucial—by the third conversation, David was much clearer about what he wanted.

I also learned the importance of exploring what matters to the person. When I asked David what worried him most, he said he was scared of 'the big hospital' and being away from his support worker. Once we arranged for his support worker to stay with him and showed him photos of the day surgery unit, his anxiety reduced significantly.

How did you change or improve my practice as a result?

I now always presume capacity and focus on how I can adapt my communication to support decision-making, rather than assuming someone can't decide because they have a learning disability. This shift in mindset has fundamentally changed how I approach capacity assessments.

I've developed a toolkit of accessible communication resources—visual guides, symbol cards, and easy-read information—that I use to support people with learning disabilities to understand their healthcare options. I've also shared these resources with colleagues to improve practice across our service.

I've improved my practice around involving people in decisions about their care. I now routinely ask 'What matters most to you?' and 'What are you worried about?' rather than just explaining medical facts. This person-centred approach helps me understand what will support someone to make a decision that's right for them.

I've also become more confident in advocating for reasonable adjustments. I now proactively arrange things like pre-admission visits, longer appointment times, and support workers being present, rather than expecting people with learning disabilities to fit into standard healthcare processes.

How is this relevant to the Code?

This reflection demonstrates several aspects of the NMC Code:

Respect people's right to make decisions (4.2): I supported David to make his own informed decision about surgery, rather than allowing others to decide for him.

Make sure people's physical, social and psychological needs are assessed (3.2): I took time to understand David's anxieties and what mattered to him, not just the medical aspects of his care.

Act as an advocate (3.4): I advocated for David's right to make his own decision and for reasonable adjustments to support him through the process.

Communicate effectively (7.1): I adapted my communication to meet David's individual needs, using visual aids and taking time to ensure understanding.

Work in partnership (2.1): I worked collaboratively with David, his support workers, and his family to ensure his voice was central to decision-making.

Do you have any further comments?

David ultimately decided to go ahead with the surgery. With the right support and adjustments in place, the procedure went smoothly, and he recovered well. He told me afterwards that he felt 'proud' that he'd made the decision himself, which was a powerful reminder of the importance of empowerment in healthcare.

This experience has made me passionate about improving healthcare access and decision-making support for people with learning disabilities. I've since completed additional training in capacity assessment and accessible communication, and I now support colleagues with complex capacity assessments in our service.

I've learned that supporting someone to make their own decisions takes more time and effort than making decisions for them, but it's fundamental to person-centred, rights-based care. Every person deserves to have their voice heard and their choices respected, regardless of their support needs.