Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Thursday, 11 August 2011

There's no place like home - thoughts on Rose Villa


What does it mean to call a place a home? Homes, like people, come in all shapes and sizes, and the concept of ‘home’ is almost certainly what Wittgenstein called a ‘family resemblance’ term. That is, the many instantiations of ‘home’ share a collection of overlapping similarities (like families), but there is no common ‘essence’ to pick out and say “this is what we mean by home”. Home is a relational concept: for a space to be a home it must stand in some kind of relation to a person (or people). But a building is not a home merely by virtue of a person being in it; there are behaviours we associate with homes (although they might be done in other places). Evidently there is an important emotional and psychological content to whether we experience a space as a ‘home’, rather than a place to eat or rest. I propose that there are (at least) three legally salient characteristics of home: autonomy, privacy and permanence. Without expounding a detailed ‘philosophy of home’, I want to explore two issues that come up a great deal in care: whether institutional care settings can erode a sense of ‘home’ through erosion of autonomy and privacy, and the effects and significance of the enforced closure – or move from – an institutional care setting. Both these issues are well captured in the recent fate of Rose Villa[1], a care home run by Castlebeck and heavily criticised in a recent CQC report, and which - it was announced yesterday – will now be closed. 


Rose Villa and the institutionalised impoverishment of home 

Unlike Winterbourne View (which was a detaining psychiatric hospital), Rose Villa was a care home, a service designed to provide a long term community placement for adults with learning disabilities. In March 2010 CQC inspected the service and reported
‘The service is trying to be person centered [sic] this means staff try to treat each resident as the unique individual they are... We read helpful information in residents care plans that showed us staff support residents really well to keep their independence in daily living activities in and out of the home. This shows residents are well supported by staff to make decisions and keep independence in their lives... Residents are well supported to live a varied and fulfilling life, both in and out of the home.’ 
On the basis of this inspection, CQC gave the home a ‘good’ rating. ‘Person centred care’ is a key philosophy for ensuring residents in a care home do not merely occupy bedspace within an institution, but actually experience that space as their home. ‘Person centred’ care is the antithesis of ‘service centred’ or ‘institutionalised’ models of care, like those so well depicted by Goffman in his seminal work Asylums. True person centred care pays attention to the needs, preferences and values of each individual, rather than imposing a ‘one size fits all’ regime on service users. It stands in contrast to institutional philosophies of care, whose ultimate ends and goals are set in accordance with the needs, preferences and values of the service. A person-centred service should try to ensure as far as possible that people are able to treat the space they inhabit within the service as you would expect to treat a home. The only restrictions on the enjoyment of that space as one would expect to a home should be in strict accordance with the principles for restricting liberty for purposes of harm avoidance, laid out in s6 Mental Capacity Act 2005

It may not sound it, but this is a really radical philosophy of care. At the heart of person-centred care is maximising respect for the privacy and autonomy of care service users. Imagine a care home where service users are able to move about spaces as unrestrictedly as most adults would in their homes. Where residents’ own personal spaces are afforded the privacy and freedom from surveillance and interference most adults would expect to enjoy. A space where residents can help themselves to food when they feel like it, or watch what they want to watch on telly. Bathe, or not bathe, at times of their choosing. A care home where residents can decorate their rooms how they choose, put posters up on the walls (however tasteless it may appear to the staff), or allow their own personal spaces to degenerate into the messes that most of our houses fall into at times. A place that residents can invite guests back to without seeking permission first. Crucially – a care home that staff and organisation treat as somebody else’s home, where they are merely the landlord and enabler of living. 

Speaking personally, I have had first hand experience of very, very few care settings like this – although I firmly believe they can exist. My suspicion is they are more likely to exist in smaller services; although it’s important not to fetishize service size too much – many people choose to live in larger communities and get a lot from that. In my view – although this won’t be everybody’s – if a care home has a big sign saying “care home” outside it, it’s a key signal that the organisation regards this space as theirs and not somebody else’s home. If staff wear uniforms, they should ask themselves whether it signals authority and proprietary control over the space and people within it, or whether it signals that they are ‘staff’ meant in the sense of ‘servants’ – there to facilitate life and fade into the background. Do staff wear uniforms at the wishes of residents, or their employers? Do residents choose which staff care for them, and how? True person centred care goes far beyond the meagre philosophy of autonomy contained within the Mental Capacity Act 2005; it requires not only that legally salient choices are offered to the service user, but speaks to the quality and breadth of the choices that are made available in the first place. It is possible that in legal terms much of what we mean by ‘person centred care’ could potentially be contained within Article 8 ECHR, but there is a very, very long way to go before this could be the case (for more on Article 8 in care, see this piece I wrote for the UK Human Rights Blog). 

To return to Rose Villa, whatever ‘person centred philosophy’ of care CQC found in March 2010 was clearly absent by their inspection in June 2011. Indeed, so far absent that one wonders whether the inspection of March 2010 probed beneath the surface of paperwork to look at the actual lived experience of Rose Villa’s residents. There is a danger in regulation and inspection that we focus on the easier to monitor features of care – care plans, buildings, staff rotas – rather than attempting to engage with the lives that are lived within those services. 

Reading the June 2011 report on Rose Villa, what stands out is just how heavily institutionalised the regime was: 
'We were given examples about living in the home such as the rules people had to follow. These included no food or hot drinks in peoples' bedrooms. Squash and water was permitted, and people had to ensure they kept their rooms clean and tidy. We were told there were set times to have baths and 'have to stick to times'... [W]e found from the comments made by some of the people living in the home about their experiences and having to adhere to the house rules, meant that they felt that their views were not taken into account, or their privacy, dignity and independence respected... As part of the evidence we saw the staff communication book. We reviewed this and found entries that gave instruction to staff about how to manage and direct people. We saw examples including people 'not having community access until further notice', and having 'their things returned on a piece meal fashion with clothes today'... Other examples included instruction to staff to ensure some people 'washed their hair everyday for a week' and we saw from the records that treats were only to be had on certain days.’ 
The regime seemed highly authoritarian and the ‘rules’ residents lived by showed little respect for their autonomy. Staff operated an ‘incentives’ system whereby residents were rewarded for ‘good’ behaviour – although there was no clear policy over the use of the system, and CQC found evidence of allegations that the system was used for bullying residents. Residents were also subject to a high level of scrutiny, and could not be said to enjoy privacy in any meaningful sense: 
‘It was evident from the staff actions recorded that people were closely monitored. For example, staff instructions to monitor posture, people were limited to ten cigarettes per day and were to avoid 'trigger' foods.’ 
CQC concluded that the service was not, after all, person centred: 
‘There was no evidence recorded that people were supported to make informed choices or to take risks safely. Staff explained to us the principles of person centred care approach but the care plans we reviewed were negative and restrictive. Although, care plans were signed by the person, the actions plans were not person centred. The language used within the action plans showed that people were directed or instructed and not encouraged or empowered to meet their needs... We found that the structure, routine, and regime could be seen as restrictive practice that did not focus on individual achievements or individual growth’ 
In fact, the degree of restrictions imposed upon residents was such that CQC even commented that there was no evidence that anyone was subject to the deprivation of liberty safeguards (although notably, CQC made no clear recommendation in the report that they should be). 

Rose Villa was evidently a failing service; but what is interesting is why it was failing. This was no Winterbourne View – CQC found no evidence that staff were physically abusing or mocking the residents, and there was at least the potential for the service to offer meaningful engagement with community and offer opportunities for more independent living. If Rose Villa was failing it was because it failed to live up to the ideals of person centred care that we expect from services today. However much we might criticise CQC, and question why these issues were not picked up on earlier, it is gratifying to see that models of care that not so long ago were the norm are now regarded as a cause for severe concern. Even without a fully developed legal framework of ‘rights to enjoyment of home’, regulation done well can help to ensure this within the care sector. 


The closure of Rose Villa – adding insult to injury? 

Since Winterbourne View, Castlebeck services have become – understandably – something of a toxic brand. It would not surprise me in the slightest if the organisation underwent a change of name in the near future. Winterbourne View closed in June, and we learned yesterday that Castlebeck have taken the decision to close Rose Villa as well. After scandals of this nature the move to close can often be widely welcomed, but we should look closely at whether this is always the best move for residents. Months after the scandal, most Winterbourne View patients are in other hospitals, and whilst these services are unlikely to be abusive on the same level as Winterbourne View patients will still find themselves subject to a heavily criticised, and outdated, model of care. After the scandal of abuse of adults with learning disabilities in Cornwall in 2005, politicians were quick to promise the abusive services would close within months. Budock hospital was indeed closed, and razed to the ground (attempts to build other learning disability hospitals on the site have met with fierce resistance from locals). Some of Budock’s residents were moved to the community, to purpose built flats with highly individualised (and highly costly) packages of care. Others, however, were moved to out of county treatment centres because no services remained in the area; one Budock victim, tragically, found themselves in Winterbourne View. My point is not that Budock – or Winterbourne View – should have remained open. Rather, that snap closure of services does not solve the wider problem of a lack of community-based and person centred services for people with high level needs. Jim Mansell and other experts have called for the government to develop better services, so people can remain in their home communities and receive more appropriate (and often less costly) treatment and support.  

But Rose Villa was not a hospital; there was no reason it could not – with hard work and good leadership – have improved to offer true person-centred care, rather than “person-centred” paperwork. Indeed, yesterday I was chatting with Community Care journalist Vern Pitt (@ComCareAdults) on twitter about the reasons for Rose Villa’s closure; from his comments it seems as if management did not regard the task of improving the service as impossible: 


The reason Castlebeck gave for closing the service was: 
‘...purely for operational reasons... Whilst we recognise the concerns raised in the recent CQC inspection report, our decision has resulted from the fact that in reviewing operational practicalities, Rose Villa would be left on its own in the South West - some distance from the support that could be provided by our services in the West Midlands... The decision is purely voluntary and not at the instigation of CQC.’ 
Apparently there are no plans to sell the care home to another provider. And so, having been subjected to a highly controlling and restrictive regime, the residents of Rose Villa will once more be denied the opportunity to make it truly their home. It seems, from what has been written, as if Castlebeck’s decision was unilateral and made for operational reasons: yet another decision taken in the interests of the provider that emphasised that Rose Villa belonged to them, and not the residents.  It is entirely possible that Rose Villa’s residents would like to live elsewhere, but we shouldn’t be too hasty in assuming this. And certainly any mention of the residents’ own wishes is absent from the reasons given by Castlebeck. The issues identified by CQC were not about the building itself, nor its location, but about staff practices. If staff practices can change, this could be a therapeutic process for all concerned; one in which residents could be offered a genuine opportunity for home and private life without the disruption and stress of an enforced move to another service. 

The stress of moving between services should not be underestimated. In the first place there is the question of how much choice residents will actually be able to exercise over where they go. Then there is the issue of lost friendships that they will have forged over the years at Rose Villa, and the need to settle into a new care home, with new interpersonal dynamics (and new regimes). How much support will they be given to ensure those friendships remain intact? Does maintaining those friendships fall into the ‘substantial’ or ‘critical’ needs supported by their local authorities? Frankly, I doubt it. If they have family or friends locally, will they remain within travelling distance? How will they get on with new staff, and how long will it take new staff to learn about their needs and personalities? Moving is stressful for most of us at the best of times, but imagine moving when you can exercise relatively little control over where you move to, and who you live with. I have seen service users experience deep distress and anxiety about enforced moves from services. I hope their social workers (and perhaps more importantly, their social workers’ managers) are sensitive to this, and take steps to help them exercise what control they can over their next destination. 

Closure of a service makes the provider, the regulator, the politicians look decisive and bold; but it is not always the best option for its users. Last year Louisa Watts’ family took a claim to the European Court of Human Rights to challenge the closure of her care home. They argued that a move from the care home, in which she had resided for five years, would endanger her life and be a violation of her Article 8 rights (Miss Watts was born in 1903, and had dementia). The court disagreed, but this is by no means the first time care home residents have fought in the courts to stay put. In 1999 Pamela Coughlan successfully sought judicial review of North and East Devon Health Authority’s decision to close her care home on the basis that the health authority had given her a ‘legitimate expectation’ of a home for life. Doubtless the ultimate outcome of this case was that local authorities are cautious not to give any such suggestions of permanence in placements these days, rather than service users actually being given homes for life, or as long as they choose. Mrs YL, attempted to challenge Southern Cross’s decision to evict her from one of their care homes using the Human Rights Act 1998; famously, the House of Lords felt that the Southern Cross– as a profit making entity – should not be restricted in its freedom to make such decisions by pesky human rights. 

The decision to close the service may have another untoward consequence. If we routinely close services that are failing, rather than embracing the possibility of improvement and change, staff will have little incentive to whistleblow about concerns when the likely consequence is that they will be made redundant. I speak from personal experience when I say that there is little more depressing for conscientious staff who have raised concerns about a service, to find that they and all their colleagues are simultaneously to lose their jobs, and then compete against each other in the labour market. However much we might want to demonise all staff in failing services, the reality is that they are not all ‘monsters’ – to find services composed entirely of ‘monsters’ would be a statistical oddity and would not explain the widescale problems we seen in the social care sector. Problems in failing services are largely structural, faults lie at the echelons of management and resource constraints; service closure punishes staff and residents for faults that were not of their making. 

Rose Villa’s residents may decide to challenge the closure of their home and dismembering of their community, but in all likelihood they would receive little support to bring such a case. What family, or commissioner, or even lawyer, would want to fight for residents’ rights to stay in a place that has received such a bad report – even if improvement were possible? Politicians and we, the public, demand swift action, we want to consign failing services to the dustbin, scrunch them up and start afresh. But these places aren’t just buildings, they are homes and communities - however impoverished and restrictive they have been in the past. We don’t recover a sense of home by yanking somebody out of the place that is most familiar to them, and the social networks they have built. We build a sense of home by helping residents and staff work together to create a better balance of autonomy and privacy, to make a mutual project of improvement, to leave their mark. 


[1] The link is to a cached version of the webpage, as Castlebeck have taken it down.

4 comments:

  1. I liked the blog - it made me think of a few points.
    1 How much research has been done on how change of " home " impacts on service users? A huge population were moved in the 80s - someone must have written about their experiences.
    2. Is current practice linked to the research from 1 - if there is any?
    3. Who should draft action plans for improvement?
    4. Who should monitor improvements?
    5. How would a service know it had improved? And what would improvement mean?
    The blog raises the interesting issue of what is "home"? The lack of security of tenure for service users and the lack of choice when things go wrong is striking. What rights do people placed in services have? What legislation supports these rights? Can we be sure that moving people from their "homes" is actually the answer?

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  2. Thanks for your comments Anonymous - those are really good questions

    I did a quick literature search and couldn't find any research on the effects of changing home, but there must be research out there on this. If memory serves, there was some research on people who had left the long-stays in the 1990's that reported last year, but I can't find it. If anyone wants to suggest some papers or reports below, please do!

    Regarding defining and monitoring improvements, my suggestions (and these are very off the cuff) would be:
    - any definition of improvement should be person-centred and rights focussed (well I would say that!);
    - residents must play a central role in defining the 'improvements' they would like to see, and in monitoring outcomes. We should be alert, however, to the danger of 'regulatory capture' for this population - whereby they fall under pressure from staff and providers to give a good report. And equally, we shouldn't be hasty to push for too much too quickly: when people have been subject to very restrictive regimes, patterns of behaviour need to be renegotiated gently and thoughtfully. A too-rapid depressurisation of restrictions can leave staff and residents uncertain as to where the boundaries are, and unclear boundaries can be as stressful and anxiety provoking as too-tight boundaries.
    - advocates would be central to ensuring service users' voices are heard; long-term advocacy would be preferable.
    - outside consultants may be able to offer expertise on better service design and management/training/supervision practices; they could also report and feedback on changes over time;
    - the regulator, as the only person in this equation with any real teeth, would play a central role in external scrutiny and pressure for delivery of improvements. That would require, of course, that they re-visit services reasonably frequently until they are back on their feet...

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  3. Thank you Lucy for yet another thought-provoking piece.
    I have commented here before on the small (5 bedded) home my husband and I run within our own home. I read your comments on what a home should be like, without uneccesary restrictions and working in a person centred way and I fully agree that is how life should be. We believe life is pretty good for our residents and get great satisfaction from working with them to achieve what they want from life. They have lived here for between 3 and 27 years and treat it just as a family home, inviting friends and family round, etc. There are very few restrictions, other than those which ensure personal safety, or occasionally in order to maintain a resident's privacy or dignity - another resident wandering into their room uninvited at the wrong moment, for example, can cause distress or embarrasment. Set routines are only based around their chosen activities and social lives, rather than our own.
    I fully agree that the staff at Rose Villa could, with better leadership, have altered the way they worked to provide person centred care and the residents there would have been able to remain in their home. It is sad to hear they will be moved with no consultation.
    We feel the small service works well although I would not disagree that some people prefer a busier environment. That's down to personal choice again. The problem with being small is the constant worry of keeping the home going if we lose any of the residents for any reason.
    Whenever we carry out care plan reviews one of the questions we ask is whether or not they are happy living here or whether they would prefer to live elsewhere, giving other options. We wait for their answers with bated breath as we know if they decide to move on that we would be struggling financially to maintain the home for the other residents. Their replies have so far been that this is their home and that it is like a family here.
    We have discussed bringing our fees up to a more reasonable level with our local authority in the past and they have quite causally suggested we give up running the home. They really do not seem to understand that if we just 'give up' that these people lose the home they love.
    Three of the four residents are on Preserved Income Support so we only receive £350 per week for each of them (£2 per hour!!)We cannot even get a top up to our contract price of £380 per week! Thankfully the LA do pay on top of this for 'activities', but that is currently under threat.
    We have an 'excellent' CQC rating and a good reputation in our local community and, I feel, with the local authority, but I do wonder if the people who control the purse strings truly recognise the importance of a true 'home' rather than just a place which meets basic needs.

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  4. I agree (as ever!) with your musings-very well put. However I think the size of the home is important (your last commenter makes this point). I still see inequities between large and small care homes and therefore between LD and older people's provision (in that older people's care tends to be delivered in larger homes). Clearly there were issues at Rose Villa, but several felt this wasn't insurmountable as you point out. I am aware of care homes that have had endemic problems for years with the care they provide (resulting in physical health deterioration) where any intervention seems to make only a difference for a short time and yet these are never closed down because they are too big and rehoming all the residents would be impossible. Also, LD services far more regularly place service users out of county (rightly or wrongly), and therefore there are many more commissioning authorities potentially involved in funding the service users in these services thus the work involved in making alternative arrangements is less burdensome on one commissioning authority. I can't help feeling that these factors have a bearing on decision making-again nothing to do with the residents themselves or their experiences of their home.

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