In the four years since Patient Opinion launched with the proposition that ‘your story can change the NHS,’ its website has become an indispensable arm of the health service. With 400 opinions posted a month and half a million page views, it’s the fastest, most effective way to register a complaint or offer praise. Patient Opinion undertakes to get your feedback to the people who are in a position to do something about it, and is seen by medical staff and managers as integral to improving services. It is also viewed gratefully by many patients, who see complaints dealt with in a way that would have been unlikely if they’d written a letter and waited 28 days for a reply, only to get one from someone who wasn’t involved in their care.
So could the same model be applied to care homes? Transparency and publicity have worked for hospitals: why not for some of our most hidden institutions?
I met Kate Ebbutt of Patient Opinion, who’s running a pilot project with 25 homes to discover whether it’s possible. She has been studying the sector, mainly by visiting care homes, for the past nine months. ‘While there’s some fantastic good practice, the vast majority are massively depressing,’ she says. ‘Some feel like they’re warehousing people before they die. Staff are often on the minimum wage and the economics mean that there may not be enough of them, even if they turn up for work. Even in well-run homes, services can suffer from high levels of staff sickness and demotivation. Some homes don’t see the residents as people and it’s as much as they can do to manage the basic physical tasks.’
Money is at the root of this, of course. But there’s also a lack of professionalism, fostered by a reluctance on the part of the general public to think about care homes because, as Kate says, ‘sadly, the perception is, they’re where you go to die.’ Care homes are inspected, but a forum for residents and their relatives would offer the possibility of publicly recognising care work, of demonstrating how valued it actually is.
It would also offer homes a useful marketing tool. What relatives selecting a home most fear is what happens behind closed doors. Throw open the doors and reputations could rise.
There are difficulties, though:
- There’s less scope for direct user comment than in hospitals. Some 70% of care home residents are suffering from dementia.
- The throughput of a care home is tiny compared to that of a hospital. If 1% of those who are admitted to hospital (or their relatives) comment in a year, you might get 5,000 opinions. In a 40-bed care home,1% could be one person.
- Patients can complain about hospitals knowing it’s unlikely they’ll be back soon. Residents of care homes are stuck with them.
- Patient Opinion publishes 98% of submissions, but works hard to make sure that both the authors and their targets remain anonymous – so ‘the consultant was rude to my mother,’ rather than ‘Dr Smith was rude to Mrs Jones’. With smaller numbers, this is much harder to do.
- Underlying all the above is a worry about making people who are already vulnerable even more so.
And yet…there is something about this idea that is very appealing. You feel it ought to work, because care homes should be subject to the same sort of public scrutiny as other 21st century services. User involvement is invaluable for sparking improvement; why shouldn’t care homes get that benefit?
That was certainly the view of the previous government, which asked Patient Opinion to look at extending its work to residential care homes – without, unfortunately supplying any money. (The original NHS service was set up with financial backing from the Department of Health, and has since become a not-for-profit enterprise paid for by subscriptions from NHS trusts.) But Patient Opinion has now been able to raise enough private backing from the sector to run a pilot, which has just begun and is open-ended. Kate Ebbutt would like to develop a self-sustaining social business for care home comments, similar to its NHS older sibling, and says if just 10% of the UK’s 18,000 care homes signed up, it could cost them as little as £100 a year. Most comments so far have been positive, which isn’t without value, especially if you are shopping around for a home, but isn’t as useful as the NHS version, where complaints and praise are split 50-50.
Patient Opinion won’t commit to how long it will go on exploring a care home offshoot. ‘It’s possible we may come to a point where we feel the work is impossible to sustain financially,’ says research director James Munro, ‘but if we’re making progress and the care homes are finding value in it, we’ll try to find a way to press on.’
NHS staff have long been used to patient feedback, but those who work in care homes, ‘are not aware they need this,’ according to Kate Ebbutt. The risks of making residents more vulnerable are serious, and Patient Opinion is acutely aware of them. But at the moment, no one wants to think about care homes, even though one prediction has it that one in four of us will end up in one. The staff have every right to feel they are neglected and undervalued and that whether they do the job well or badly doesn’t make much difference. But it does, and it would be great for that to be publicly acknowledged. ‘I have had the honour of working with some exceptional homes,’ Kate says. ‘Many staff are passionate, and want to do the very best for the residents. My hope is that the standard of care across the whole sector will reach that level.’