"Some of the nurses were caring, some appeared to be in the wrong job," wrote the son of an 84-year-old dementia sufferer who was admitted to Northampton General Hospital after collapsing at home last year. The staff reportedly failed to help him with feeding, drinking, taking medicine and passing solids.
"We were left with the general impression that the care was similar to that in a third world country, ie that if you did not have relatives to care for you, you would probably die," added the son, a local GP, last July.
These comments, together with a response from the hospital promising to circulate the story and review training, as well as a request that the son passes on which ward was involved, will stay for a year on Patient Opinion. The website was designed by a Sheffield GP to allow patients to comment on care and see how others were treated, while providing trusts with an insight into their patients' perceptions of services.
The site, run as a not-for-profit social enterprise funded by subscribing trusts with support from the Department of Health, may be integrated within the Choice website announced by the health secretary, Patricia Hewitt, on January 23, according to its chief executive Paul Hodgkin. Dr Hodgkin, who now works as a GP one day a week, started Patient Opinion four years after observing auction website eBay's member reputation system. All buyers and sellers on eBay can leave verbal and numerical feedback on each transaction to which the other party can respond, with both left online for others to see. Since opening in September 2005, Patient Opinion has posted 1,500 patient "stories", concentrated on South Yorkshire. It hopes to manage 100,000 annually by 2009.
"If we didn't do it with NHS values, someone else will," says Dr Hodgkin. He points to RateMyTeachers.com, a US venture funded by advertising which takes comments from British students and parents, describing it as "a very rancorous site".
Patient Opinion edits 15% of comments before publication and publishes 95%. Some of those not published concern hospitals outside the UK, but others are considered too critical, confused or ranting to be of use - although these are forwarded to the trusts concerned.
"If it said 'Mr Jones the gynaecologist was a butcher', we wouldn't publish it," says Dr Hodgkin. "If it said 'Mr Jones was very rude to me', we'd edit it to 'the gynaecologist who treated me was very rude'. We don't publish gratuitous knocking copy." He adds that half of comments are appreciative, a quarter critical and a quarter mixed.
Nigel Edwards, director of policy for the NHS Confederation, says member organisations need to take patients' concerns seriously, including those which could be dismissed as trivial: "It's all about the care experience, what you can expect in terms of food, or whether you can park your car," he says. "If it puts [a hospital] at a disadvantage, that's the way it is."
Edwards adds that anonymous feedback - which Patient Opinion allows - can lead to candour but can also be unreliable, as contributors may not have used that service, or may make multiple complaints under different pseudonyms. He says trusts could issue passwords for independent websites to tackle this.
Patient Opinion does not require passwords, asking instead for postcodes and email addresses. The latter is checked only if a comment is particularly strong. "The more you want to stop gaming [manipulation of the service through fake or duplicate comments], the more the barrier to entry," says Dr Hodgkin.
Some charities collect patient experiences through their websites. The Stroke Association says its TalkStroke message board includes discussion of rehabilitation care in different areas, but given the scarcity of such services, patients tend to be grateful for what they get, rather than exercise choice using such information.
Some local authorities have created online feedback systems, although these may focus on policies and decisions rather than individual experiences. Stephen Hilton of Bristol city council says a moderated online discussion forum, of the kind the city runs at AskBristol.com, can work like a public meeting, increasing participation by involving those unable to attend or unwilling to speak in public.
A discussion at AskBristol.com last summer on a piece of graffiti by the artist Banksy on a building near Bristol's Council House - depicting a nude man hanging from the ledge of a window, from which his lover's husband looks out - attracted thousands of contributions. The city, contrary to its policy but in line with the vast majority of responses, left the painting in place on the building, which houses a clinic for treating sexually transmitted diseases.
William Heath, chairman of public sector research and publishing firm Kable, describes public sector feedback services as "the missing element of transformational government". As a fellow of the Young Foundation, he has worked on how such online systems could be established across public services, combining the best of statistical surveys and individual stories.
But he says these would have to be run by independent organisations - such as the Young Foundation, which created Which? - rather than government. He criticises the Department of Health's decision to ask a limited number of companies to compete to run the Choice website: "If they are sponsored and controlled, pressure for them to say what government wants them to say becomes unbearable," he says of such websites.
