Reflection: Advocating for a Patient's Right to Make Decisions

Submitted by: M.P., Learning Disabilities Nurse working in a community learning disabilities team

What was the nature of the CPD activity and/or practice-related feedback and/or event or experience in your practice?

I was supporting a 28-year-old man with a learning disability who lived in supported accommodation. He had expressed a strong desire to move into his own flat with minimal support, as he felt ready for more independence. However, his family and some members of the care team were concerned about his safety and believed he should remain in his current placement.

During a review meeting, I observed that the discussion focused heavily on risks and what he "couldn't" do, rather than his strengths and aspirations. He became visibly upset and withdrawn as others spoke about him rather than with him. I felt uncomfortable with the direction of the conversation and the assumption that others knew what was best for him.

I intervened in the meeting to refocus the discussion on his wishes and what support he would need to achieve his goal safely. I advocated for a supported decision-making approach, where we would work with him to identify risks and develop strategies to manage them, rather than simply preventing him from taking this step.

After considerable discussion and planning, we agreed to a phased approach where he would spend increasing amounts of time in a trial flat whilst maintaining his current placement as a safety net. This allowed him to develop independent living skills whilst managing risks appropriately.

What did you learn from the CPD activity and/or feedback and/or event or experience in your practice?

This experience reinforced the fundamental importance of advocacy in learning disabilities nursing and the need to actively challenge assumptions about what people with learning disabilities can and cannot do.

I learned that risk-averse approaches, whilst well-intentioned, can significantly limit people's opportunities for growth, independence, and self-determination. My role as a learning disabilities nurse isn't to keep people safe by restricting their choices—it's to support them to make informed decisions and manage risks in ways that promote their autonomy and wellbeing.

I also recognised the importance of ensuring that people with learning disabilities are genuinely at the centre of decisions about their lives. It's easy for professionals and families to dominate discussions, particularly when we're concerned about someone's safety, but this can inadvertently disempower the very people we're trying to support.

The outcome of this situation was extremely positive. The man successfully transitioned to independent living with appropriate support, and his confidence and quality of life improved significantly. This reinforced that people with learning disabilities can achieve far more than others sometimes assume, when given the right support.

Following this experience, I completed training in the Mental Capacity Act and supported decision-making approaches, and I've become more confident in my advocacy role.

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

Following this experience, I have made several changes to my practice:

• I now actively ensure that people with learning disabilities are genuinely at the centre of all discussions and decisions about their care and support
• I've developed better skills in facilitating meetings to ensure the person's voice is heard and their wishes are respected
• I take a more strengths-based approach, focusing on what people can do and want to achieve, rather than solely on risks and limitations
• I've become more confident in challenging risk-averse attitudes and advocating for people's rights to make their own decisions, even when others disagree
• I work more collaboratively with people to identify and manage risks in ways that support their goals rather than prevent them from pursuing them
• I've improved my knowledge of the Mental Capacity Act and supported decision-making frameworks to ensure I'm supporting people's rights appropriately

These changes have made me a more effective advocate for the people I support. I've noticed that when people are genuinely involved in decisions about their lives and supported to take positive risks, their confidence, independence, and quality of life improve significantly.

I've also shared this learning with colleagues and have delivered training on advocacy and supported decision-making to our wider team and to support workers in residential settings.

How is this relevant to the Code?

This reflection relates directly to several aspects of the NMC Code:

• Section 1.1: Treat people as individuals and uphold their dignity - I ensured the person was treated with dignity and respect, and that his individual wishes were central to decision-making
• Section 2.2: Recognise and respect the contribution that people can make to their own health and wellbeing - I recognised his right to make decisions about his own life and supported him to do so
• Section 3.1: Pay special attention to promoting wellbeing, preventing ill health and meeting the changing health and care needs of people during all life stages - I focused on promoting his wellbeing and independence, not just managing risks
• Section 4.1: Balance the need to act in the best interests of people at all times with the requirement to respect a person's right to accept or refuse treatment - I balanced safety concerns with his right to make his own decisions
• Section 4.2: Make sure that you get properly informed consent and document it before carrying out any action - I ensured he was fully involved in decision-making and that his consent was properly obtained
• Section 17: Raise concerns immediately if you believe a person is vulnerable or at risk and needs extra support and protection - I raised concerns about the risk-averse approach that was limiting his opportunities, advocating for a more balanced approach

Continuing Development

I plan to continue developing my advocacy skills by completing advanced training in the Mental Capacity Act and human rights-based approaches to care. I'm also working with our team to develop better processes for ensuring that people with learning disabilities are genuinely at the centre of all decisions about their care and support.

I've committed to regular reflective supervision to ensure I continue to challenge assumptions and advocate effectively for the people I support.

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