'Advocacy helps': Service outlines help it gives to patients, disabled and bereaved

A man with an intellectual disability whose family controlled his money, bereaved parents of a newborn baby, and people impacted by hospital delays were among those helped by the National Advocacy Service for People with Disabilities and Patient Advocacy Service. File picture

A man with an intellectual disability whose family controlled his money, bereaved parents of a newborn baby, and people impacted by hospital delays were among those helped by the National Advocacy Service for People with Disabilities and Patient Advocacy Service.

The service published information sharing a snapshot of its work.

In one case, ‘Joe’ moved to a house in the community having lived with his family previously. He was unable to buy tickets to matches or attend social activities despite being eligible for the Disability Allowance.

When an advocate met Joe’s family, it emerged he was also the beneficiary of a Trust fund. He now has his own bank account.

‘Katherine’ and her partner asked for help with the inquest and procedures around the death of their days-old daughter as well as a complaint of poor communication and lack of maternity bereavement supports.

An advocate attended meetings with them, helped them request medical records using the Freedom of Information Act and a formal review.

“Katherine hopes that this will result in quality improvement at the hospital and will improve patient safety there and the patient experience,” the casebook says. Poor communication with patients or relatives of deceased patients by hospitals and nursing homes is commonly mentioned.

One man, ‘Jonathan’, experienced “a lengthy delay” being admitted to a hospital through its emergency department, poor communication around delays and medication, among other issues.

He felt unhappy and vulnerable, later contacting an advocate for help who supported him in making a formal complaint and requesting a meeting. 

“During the meeting, the hospital apologised to Jonathan and acknowledged that there had been failings in his care,” the casebook states. “The hospital made assurances to Jonathan that they would make improvements in the Accident and Emergency Department.” 

Another woman ‘Louise’, complained about poor communication following the unexpected death of her sister in an emergency department. The hospital did not provide follow-up communication with her family and showed “very little empathy towards them”, the casebook shows.

An advocate helped her research hospital policies and write a formal complaint. “The hospital stated that there had been learning from the complaint, and they would make improvements in how they made clinical care plans and nursing care plans,” the casebook shows.

They committed to having a family room on wards for end-of-life situations, and better communication.

Rosemary Smyth, chair of the National Advocacy Service for People with Disabilities which delivers the Patient Advocacy Service, said the casebooks show the range of people who rely on independent advocacy services.

She said disability cases “highlight the growth in advocacy issues relating to financial autonomy” now. “Advocacy helps breach gaps in systems that leave people in difficult situations,” she said. 

“It ensures best practice across public services, and it promotes positive systemic changes when necessary.” 

• NAS National Line: 0818 07 3000 
• Patient Advocacy Service National Line: 0818 29 3003