PRSB is passionately committed to giving a voice to patients and carers. We are eager to know what health and social care information they believe should be collected and shared to help address their personal health and wellbeing goals. That’s why this year’s AGM had such a strong person focus, showcasing a range of patient views and putting them centre stage.
We asked the new CEO of National Voices, Charlotte Augst, to share her thoughts on person-centered care. She explained how important it was to support preventative rather than reactive treatments and care, and how listening to patients could support this. “Many people have more than one condition and complex needs,” she explained. “We can’t afford to not understand the needs of the people who are actually using the services.” By utilising the power of information, she said that health care teams and patients could work together to improve health outcomes.
In addition to speeches from our chair Professor Maureen Baker and CEO Lorraine Foley, we were delighted to hear from Dr Nicola Byrne, who talked about the benefits and challenges of implementing standards at South London and Maudsley NHS Foundation Trust. Nicola told us about the great lengths they’ve gone to to develop IT systems that provide clinicians with the vital information they need to provide mental and physical health care to their patients and service users. “I consider whether we are asking the right questions, how the information is gathered and then how it is shared. We need to ensure we are asking questions in the right way, especially when it is sensitive or difficult info such as weight or alcohol use,” she said. Nicola went on to describe the work they are doing to develop intuitive IT systems that provide timely and relevant information to support good care.
We rounded off the morning with a panel session of patients and carers, who spoke about their direct experiences with care. PRSB patient rep, Laura Fulcher, joined carer, Patrick Ojeer, carer and patient, Lynne Wright, and project and partnership manager for the Patient Information Forum Sophie Randall, to discuss the ways in which good information sharing and clear shared records could improve the lives of patients of carers. All four agreed that good communication helped to reduce anxiety and stress when waiting for results, as well as enabling better personalised care.
“When my grandfather had dementia he would forget he had eaten and look for my nan, who’d died years earlier. When he was transferred to a general hospital for an infection they had no idea he had dementia and so his care was comprised,” explained Sophie. “It’s vital this kind of information is shared.”
Lynne added when it comes to dementia care, the family also need to have access to information. “My husband has dementia and is deaf. They want to speak to him about appointment reminder and will sometimes not speak to me. I get very stressed when this happens.” Meanwhile, Patrick added that remaining in ‘control’ of your own care was crucial to both health, happiness and managing conditions.
PRSB’s new look annual report – more than words on a page!
PRSB is keeping pace with change and so we’ve created a new mini-website that hosts our 2018-19 Annual Report and Accounts. It’s an exciting new format that allows us to tell the story of our achievements in the last year through the people who’ve participated in our work, our videos and podcasts.
It’s packed with news about our recent standards and upcoming agenda of work for the year ahead. You can find the report here. If you are interested in getting involved in any of our projects as a patient, carer or professional, get in touch at firstname.lastname@example.org.