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.’
Presuming that giving an honest opinion on the standards of care in a care home would make the vulnerable resident who dares to criticise more vulnerable, as the author appears to do here, indicates that there is already a widespread culture of abuse of power across the sector, which is recognised, but not spoken of – at least directly.
Having recently visited elderly relatives in different care homes, in different parts of the country, the description of warehousing people to await death rings very true. The elderly can often be moved in to these places by relatives who are meeting their own needs, not those of the elderly person, which closes down the support and alternatives which would be available to an ordinary hospital patient. Social Services do not act effectively as advocates for vulnerable elderly people whose views on their own care are often overlooked, and not taken seriously. (“Ofcourse she wants to go home, they all do..”)
The elderly need a voice, preferably their own. They should be able to speak freely without free of recriminations from care home staff. That seems so blindingly obvious, it shocks me to have to say it.
Paula, I agree: the elderly do need a voice, and better by far that it’s theirs. I also take your interesting point that relatives may have their own agenda and their views may be guided by a strong wish not to take on the responsibility themselves. But often, relatives are the best hope a care home resident has.
Patient Opinion are grappling with the issue of possible recriminations. As you say, the idea is so loathesome we don’t really want to confront it – but care is so intimate and personal and emotional (why on earth don’t we value it more?) that the possibilities for abuse are extensive. Better by far, surely, to have as much transparency as possible. And to make care workers feel that they’re doing things that other people are not only noticing, but commenting on.
There is a huge difference between hospitals and care homes and that is one of accountability. The article completely misses the point that should a care home be neglectful or found to be in any way abusive then immediate sanctions are put in place to prevent any further admissions or even close the home down. This is quite simply not the case with hospitals that can be institutionally abusive to the elderly with impunity as there are no repercussions for the hospital or the staff. I am speaking as the son of a lady that was very well cared for in a care home for many years by dedicated staff who went out of their way to make my mom comfortable. When she had to go to hospital due to an infection she was there for three weeks and eventually returned to the care home having lost one and a half stone and gained three pressure sores that she never fully recovered from. She was nursed in bed at the home for 2 years and never had a mark on her skin but in a few weeks in hospital she was a shadow of her former self. The home raised a “safeguarding vulnerable adults” referral into the neglect at the hospital and social services were horrified at her treatment. The upshot of it all was a whitewash where the hospital blamed my mother’s health for the pressure sores when it was clear that they had neglected her by not providing the correct equipment, not feeding her or even providing basic personal care.
I have a friend who was unfortunate enough to have his dad placed in a care home where he did not receive as good care as my mom did. He complained to social services and an investigation was launched. The result was a block on any new admissions and a review of each person in the home. Changes were made and the home improved as a result and a member of staff was dismissed. This is in stark contrast to the complete lack of action taken against the hospital even though my friend’s concerns were of a considerably less serious nature e.g getting up late and being put into pyjamas at 6.30 rather than 8pm.
Sorry to ramble but I know that care homes are already far more accountable than hospitals as fundamentally people have a choice of which care home to use but do not have a real choice of hospital and also, care homes can be closed. The local police liaison for abuse of vulnerable adults told me that she had a huge number of complaints and allegations of abuse or neglect surrounding the hospital and stated that she would love to block new admissions or close the hospital but was unable to do so. She also stated that if the hospital was a care home it would have been closed years ago.
Very heartened to read that Patient Opinion is moving on the nursing home front. I belong to an Australian policy group that recently made a submission to a Productivity Commission enquiry “Caring for Older Australians”. We are concerned at the daunting complexity of the system, with a dozen acronyms that only the in-group understand, and at the lucky-dip nature of aged care – occasionally excellent, often not. Our document is called HOPSCOTCH ON WALKING FRAMES.
One section is on the demoralizing effect institutions have, with their top-down decisions:
In high-care residential facilities, there is too often a progressive diminution of personal autonomy. It is a denial of dignity to characterize someone as incontinent rather than help her go to the bathroom, even if that is more convenient for staff. The resident who uses a wheelchair may require less staff time than the one who uses a walking frame. Noisy television programs may run all day regardless of individual choice. It is a struggle to retain individuality in a setting where staff members take charge of medications, meals and timetables.
All too often staff say things like, “They’ll soon settle down.” This, unfortunately, may mean “We’ll institutionalize them soon enough.”
Read the whole document at:
http://www.pc.gov.au/__data/assets/pdf_file/0009/99207/sub025.pdf
Acutally, our own experience with my parents echoes John’s. My Dad when into hospital for what was a routine procedure, acquired bed sores, eventually died of them. My Mum died in the local care home, very well looked after. So maybe care homes might be more responsive.
One interesting question is the role of dementia. The assumption is that people with dementia cannot express clear preferences about the care they receive. Yet work with Dementia Care Mapping shows it is possible to work out what people with dementia prefer : http://www.brad.ac.uk/health/dementia/DementiaCareMapping/. Helen Sanderson Associates have been doing interesting work in this field along with planning for the End of Life: http://www.helensandersonassociates.co.uk/blogs/helen.aspx.
It maybe the standard Patient Opinion toolkit might not work but something that allows more of a conversation to develop between carers, their clients and families.