Have your say on the NHS - recount your experiences, good or bad

LISTENING to patients and the public is the best way to find out what people think about local healthcare and to make health services fit in better with local peoples’ lives.

Everyone who uses the NHS has their own story to tell. The people who organise and buy the health services need to hear those stories.

To give people a chance to air their views - and to have a say in how services could be provided - NHS West Essex has launched the Public Engagement and Patient Experience Blogs (PEBL) project westessexpebl.com

The project, funded by the National Institute for Health, is being run by NHS West Essex’s Research and Development Office with collaboration from the University of Essex until March 2012.

PEBL Lead, Charlie Davison, said: “The re-organisation of the NHS presents a golden opportunity for people to get their voices heard.

“We want real people to tell it like it really is. So many people have got stories - good and bad - about the treatment they have received and so many people have got opinions about how services could be better.

“We want to try and set up a way of feeding all that back to the real decision makers.”

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Via the PEBL website - westessexpebl.com - people can give their views on the NHS anonymously, recounting their experiences of the NHS and its services.

Charlie added: “Thousands of people routinely feed back their consumer views to websites. We want to see if it is possible to tap into that feedback culture and create an open channel between local people and the NHS staff whose job it is to provide their health services.

“In the second world war the Government had a network of people sending in anonymous letters and diaries about how they were coping with the war and how feelings were running in their families and communities. They called it the Mass Observation project. It meant the administration constantly had their ear to the ground and decision makers knew what was going on in ordinary people’s lives.

“We want to recreate that in west Essex but focused on health. In the 1940s they used letters in the post. At PEBL we think a simple website is the 21st century version.”

Listening to patients and the public is the best way to find out what they think about local healthcare and to make health services fit in better with peoples’ lives.

The problem is that staying healthy and/or dealing with illness when it happens are very personal things.

“All the different kinds of people in a community (young, old, men, women, ethnic and religious groups) tend to have different views about what makes a good health service,” Charlie added.

“The NHS usually tries to find out what people are thinking by using simple ‘tick-the-box’ surveys. These are quite easy to do and quick to carry out but they also only produce quite basic information.

“For example a survey can find out that a certain percentage of people are ‘satisfied’ or ‘dissatisfied’ with their treatment but that kind of work can’t find out why people are satisfied or not. To know this, you have to listen to the person’s own story.”

The PEBL project will collect the stories and make a summary of the main issues that patients identify. These summaries will be fed back regularly to local NHS decision-makers so they can supply local services which fit in with local people’s lives.

The overall aim is to develop a system of doing this that is simple and workable so it can be introduced throughout the NHS.

PEBL contributions can be as long or as short as people want.

People contributing to PEBL can feel free to blog about any aspect of health care and any of their experiences of being an NHS user.

PEBL hopes many people will return to the site and become regular bloggers. The project is also beginning to open special areas where people going through particular kinds of health care ‘pathways’ tell their story.

The first of these areas is Prostate Care.