How are we involving patients in our work?

We are a membership organisation and we work closely with our members to define what needs to go into a standard . Our workshops, surveys and events all involve patients and carers in this process.

Listening to patients and encouraging their stories

We encourage patients to tell their stories about how information is shared when they move from one care setting to another and how it has impacted upon the care they have received. We use a variety of media including case studies and videos to share these experiences.

We use these stories to help encourage and influence health and social care to adopt best practice in record keeping and to find innovative ways to ensure that patients and their families also receive the right information at the right time.

How does good information sharing benefits people who use our services?

Getting the right information to the right people benefits patients in a number of ways, including:

  • Key information is shared with all those the patient comes into contact with, meaning patients do not need to keep repeating the same information time and time again
  • Errors in medication are reduced
  • Transfers of care, from one part of the service to another, are efficient and timely, reducing delays
  • Health and social care can be targeted to support people in the most need
  • Patients receive information, for example on discharge, and understand what has happened to them and what will happen next – this supports shared decision making about future care and there is some evidence that suggest patients stick to their medication regime when they understand what it is for.
Find out how you can get involved.

If you would like to get involved or find out more then please contact us

A carer's view

Cally Ward is a carer for her adult son with learning disabilities. Cally tells us how personalised care can be life changing.

"Personalised care and support has made a world of difference to my 47-year-old son, Michael, who has Down syndrome. Over the years he’s suffered with some very complex health problems, including a thyroid condition, sleep apnoea, ulcerative colitis and a rare liver condition - read the full story

A patient's view

Why should doctors write letters directly to patients?

Alan Craig, a patient with multiple long term conditions tells us why communicating directly with patients is so empowering. "I need to be able to take my medications in the right way, monitor my progress and understand what I can do to take care of myself in the best way. I welcome the ‘Letters to Patients’ initiative because I feel that by aiming medical information clearly in the patient’s direction it underlines the key part that patients are able to play in their own healthcare. " - read the full story

Sabine's story

Sabine is a parent carer who is working with us to implement the child health digital strategy.  Her son has additional needs and he sees a number of specialists in different care settings. Sabine is responsible for co-ordinating all the information between care professionals which she finds a constant challenge. Find out more