How Advocacy in Healthcare Saves Lives

Posted 20/06/2024

Continuing with theme of ‘Do you see me’ for this year’s Learning Disability Week, we want to focus on Peter*, supported by Aspire Living, who’s support team helped him have his voice heard during his cancer diagnosis.

Around 18 months ago, Peter experienced a change in his bowel habits. Peter’s support team quickly arranged a doctor’s appointment where they took a stool sample. The conclusion was that it was likely bowel cancer and further tests confirmed this diagnosis.

The doctor went straight to end of life care, believing that the surgery required would be too dangerous for a man in his mid-70s. Accepting this decision and beginning palliative care would start the clock on the end of this Peter’s life. The team, led by manager Mel, strongly disagreed with this assessment.

They believed that Peter was healthy, very fit and active for his age, and has a strong level of independence. Peter also has selective mutism, which meant that the team had to be his voice throughout the process. The team spoke with Peter about his wishes, his family and shared their own beliefs about his fitness for treatment. They then decided to seek other medical opinions.

Peter completed a fitness test and had a treatment plan created around his current condition. Following this, Peter had the surgery to remove the mass and recovered well. Peter returned home after four days, to be in intensive care for a week. The team supported him throughout the process by prepping his hospital passport to advise the hospital staff how to communicate with him. They also ensured that he was accompanied by familiar people to make the process as easy as possible.

The team did receive Restore2 Mini training, which they say helped give them the confidence to speak their mind with the professionals. However, they did specify that without the training, they still would have gone ahead given the seriousness of the situation. The team were shocked at the doctor’s opinion and wanted to ask questions on behalf of Peter. The situation and positive outcome have made them feel proud and validated as a team.

It is no exaggeration to say their actions saved his life and we thank them all for being incredible advocates for his health and wellbeing. Peter’s story shows how important it is that people with a learning disability have their voices heard. This is especially true in healthcare, where symptoms in people with a learning disability can go unnoticed.

Peter is continuing to live his life as he chooses in his own home, supported by his team at Aspire Living!

*Name has been changed for privacy reasons

Learn more about Restore2 Mini here