Time for user-led inspections?

Obviously the quality of NHS care is in the spotlight now that the Francis report into appalling failures at Mid Staffs Hospital has finally been published. But social care is also going through some quality changes. The Care Provider Alliance (which I’m chairing for the year) came together with The Nuffield Trust last week, which has been asked by the government to explore the idea of developing a new approach to quality ratings within social care. We used to have them of course: the inspector, before it became the Care Quality Commission (CQC) and its role diminished to inspection of safety and compliance with essential standards, used to rate services on quality. In Shared Lives, we were very keen on this, because were top of the class with 35% excellent, 95% good or excellent. In truth, star ratings were a blunt instrument, but much mourned when they were abolished by the Dept Health.

Things have changed since then. We have moved on from believing that a visiting inspector can comprehensively judge the quality of a service, towards believing that the key issue is the outcomes being achieved for each individual using a service and that best people to judge the achievement of those outcomes are the individual themselves and their families or advocates. After all, many people are now individually choosing their service using a personal budget and in many cases taking personal responsibility for buying that care via a Direct Payment, so ensuring they are involved in monitoring its quality is the next logical step (see below for more on this).

There was a fairly intense discussion: the CPA brings together the representatives from the vast majority of the independent care provider sector, including care homes, home care and community services, of all sizes. However, I felt there was a fairly broad consensus from CPA members on some key points:

• There is a need for quality ratings, which are fair, accurate and proportionate
• There is a need for a strategic overview and leadership from DH to ensure that the Quality Ratings review, NICE Quality Standards, CQC’s activities, PQP & NHS Choices, Healthwatch, the TLAP programme and its quality strand are brought into alignment as part of a strategic vision.  There is currently confusion.
• The starting point must be the experience of outcomes of people using social care – the kinds of outcomes aimed for will often be the same across different settings, even if the approach to achieving them will differ.
• We do not believe we can have a single health and social care rating system without adding to confusion and measuring the wrong things for social care in the wrong way.
• The new system must

Have we become a neglectful society?

Norman Lamb, the Care Minister, gave an interesting interview in the Telegraph over the Christmas period, which was given the rather unfortunate headline, “Neglectful Britons blamed for forcing elderly into care homes”. This picked up on the Minister’s view that we have become a “neglectful society” and that we need to rebuild “neighbourly resilience”, without which, he was quoted as saying, pensioners lead dismal, lonely lives.

Mr Lamb was given a hard time for this by Sarah Ditum, writing in the Guardian, who said that “The government has some cheek to say we’re not caring enough” and pointed out that more unpaid family carers are caring for more hours per week than ever; a huge contribution which Ditum argues the coalition is undermining with cuts to public services.

Ditum is right that, as social care services are being ever more tightly rationed, whilst the impact upon the NHS is starting to show, the impact upon family carers is often hidden, yet very real.

However, I don’t read the Minister’s comments as being about unpaid family caring. His suggestion that we have become a “neglectful society” is strikingly reminiscent of John McKnight’s suggestion, that we (in his case, the ‘we’ being US citizens in the 1990s) have become “a careless society”, in his book of the same name. McKnight was one of the founders of ‘Asset Based Community Development’, an idea which Lamb’s predecessor, Paul Burstow, talked about approvingly in the run-up to launching the social care White Paper. ‘Asset-based’ or ‘strength-based’ approaches start with the premise that seeing only people’s needs and vulnerabilities (their ‘deficits’) will lead to services being designed to impose outside ‘expertise’ at the expense of individual, family and community resilience. In other words, poorly designed, if well-intentioned, social services can become part of the problem, ‘colonising’ communities and ordinary human relationships and leaving citizens who have, in McKnight’s words, “grown doubtful of their common capacity to care”.

So McKnight was not arguing that people had stopped caring about each other, but that they had stopped seeing the active support of those around them as their role, instead believing that only the state was qualified to provide support. It’s a powerful – and by virtue of its power, a dangerous –  argument, but one which needs serious consideration.

A small-state fanatic could see it as an excuse to cut services in the naïve belief that people will start supporting each other as soon as the state ‘gets out of the way’. McKnight was instead arguing for services which were more led by people and which worked alongside and supported their relationships, rather than supplanting them. You only have to look at the isolation of thousands of older people or the disempowerment of many people with learning disabilities living in ‘service settings’, to realise that even well-funded traditional services cannot address isolation, in all its many forms.

I met Mr Lamb a number of times in the Autumn, including to discuss asset

Personalisation for offenders?

I’ve blogged before about the incredible achievements of a small number of Shared Lives carers who specialise in supporting offenders with learning disabilties or mental health problems. We are working with Manchester Metropolitan University and others to attempt to scale this kind of care and resettlement up nationally. Here’s my column about personalisation in Guardian Society: http://goo.gl/0ASN0.

There is a longer piece about lessons for other sectors from the personalisation of social care published with the RSA: http://goo.gl/fD6NA.

Countdown to the White paper

Despite stories in the press about delays to the White Paper, as far as we can tell, it remains on track for publishing in ‘the Spring’. ‘Spring’ in civil service speak lasts well into June, of course. We’ve got a fair idea of what’s going to be in it, because the government involved lots of people from the sector in drafting the early ideas and strongly welcomed the ideas we came up with around prevention and the help which people and communities need to tackle problems like isolation, which services cannot fix.

As well as setting the tone for the whole sector for years to come, a good White Paper needs one or two eye-catching initiatives, which capture the imagination as well as the spirit of the policy changes. The impact of complex policy changes can be difficult to grasp by those not immersed in how social care legislation and regulations work, but who nevertheless have strong views on what good care, support and inclusion looks like. Sometimes relatively small-scale changes can exemplify the broader intentions.

So whilst I could take a good guess at the range of policy shifts we’re likely to see in the White Paper and I’m not expecting to be surprised by its ‘narrative’, here’s a rather specific idea which I’ve no reason to think is anywhere in it, but which I think should be considered:

Close as many as humanly possible of the remaining 100+ ‘hospitals’ for people with learning disabilities.

These are the institutions, often ostensibly used for assessment of people considered ‘challenging’, which were made infamous by the BBC Panorama expose of Winterbourne View. The recent CQC inspections of these institutions which followed that exposé  are not finding that all are havens for abuse –far from it. There will be many dedicated and skilled staff working in such places – I used to be a care assistant in a residential home for people considered challenging and I came across no abusive staff and plenty of entirely lovely people working long hours for little money.

But CQC has been finding a significant number of places which are completely unacceptable: buildings which smell of urine; services which lack the proper safeguarding procedure and protection for people’s rights; people with no care plans; worryingly lax use of restraint. The reason such places should not exist is not, however, that they are places where abuse is more likely, although I believe that the risk of abuse increases when people are managed as part of a large group and spend little time outside of an institution. The reason such places should not exist is that, even if they are run brilliantly, a 20 or 30 bed ‘hospital’ in a non-residential area with locked doors and the conflicting support needs of large numbers of ‘challenging’ people, may be able to deliver warmth, food and shelter, but can never deliver the basic quality of life which we take as read: real relationships with people who aren’t paid to be with you. The chance to be a part of a community. ‘Ordinary’ home and family life. You’re much more likely to learn the skills and attitudes you need to take part in ordinary life when you’re living in an ordinary family home. Although the stated purpose of care offered in these ‘hospitals’ is to assess people’s needs, in reality, some people spend months or even years living there because no alternative has been found.

But Shared Lives and other community-based forms of support are in almost every area and have a track record of supporting people considered challenging (see Alan’s story). They are not even more expensive than these institutions – commissioners often make huge savings through helping someone switch to Shared Lives. The heavy lifting of closing long stay institutions has already been done for us. There aren’t many left: let’s make this White Paper an opportunity to close that chapter of history for good.

No more Winterbourne Views

I’ve just returned from Butlins in Bognor Regis (who says working in the charity sector isn’t glamorous?) where, with lots of help from volunteers from local and not-so-local Shared Lives schemes, a group of Shared Lives carers and people who use Shared Lives are taking a week’s break. We usually do this in Blackpool, and recently our colleagues at Aberdeenshire Shared Lives have organised weekends in Aviemore, but we thought it was time we came down South for a change.

Even Bognor, the UK’s sunniest place, hasn’t escaped the rain this week, but no one is going to let that stop them having fun. We were also doing some work. Colleagues have been hearing from people who use Shared Lives about how it has transformed lives which in some cases have been led in residential care or other institutions. Shared Lives carers are a dedicated bunch, and twenty of them crammed into our chalet for a session on personalisation and personal budgets yesterday, when they could have been enjoying some brief moments of sunshine. We discussed how Shared Lives can help people have more control and choices in their lives and I heard from some Shared Lives carers who were combining Shared Lives support with micro-enteprise approaches. In one instance, the carer offers Shared Lives in her family home and then, for people who want to move into a more independent setting, supported lodgings close by, so that she can be the consistent source of support as someone moves towards their own place.

Perhaps it was because I’d had the (too rare!) opportunity to spend time with people at the front line, and to see people with learning disabilities having fun and joining in with all the holiday activities that others were enjoying, that I felt particularly strongly when I noticed the current Mencap / Challenging Behaviour Foundation campaign to close down the remaining long stay ‘hospitals’ for people with learning disabilities and ‘challenging behaviour’.

There is no reason for these places to exist. However well run they are, large institutions will never be the best way for people to move back towards ordinary family and community life. The campaign is based on you emailing your MP, to ask her or him: Please write to the Health Secretary Andrew Lansley MP, expressing concern about the continuing existence of long stay institutions and ‘hospitals’ for people with learning disabilities and recommending that they are replaced with community-based alternatives (such as small homes, supported living arrangements and Shared Lives) as soon as possible. Emailing your MP takes seconds, thanks to Writetothem.com.

What was suprising about the Winterbourne View scandal was not, sadly, that abuse took place. When people are placed out of sight and mind, in institutions designed to contain and control them, there will always be instances of abuse. What was suprising was that such places continue to swallow up vast sums of public money, when cheaper, better alternatives like Shared Lives are well established and widely available.

Taking gambles that pay off

This is the third blog I’m writing off the back of a seminar with social care leaders which looked at the question of citizen and community-led change. One of the debates we had on the day was the age old debate of whether change is all about changing systems, legislation and funding routes, or all about changing attitudes and culture. It’s one of a number of questions to which I think the answer is both.

We need to tell stories about, for instance, the lady in Wiltshire who was helped to maintain independence by the provision of a £100 grit bin for her hill, plus some encouragement from her neighbours to share the task of gritting, rather than the provision of a special transport service, or meals on wheels. The latter solution would have helped speed her isolation and reduced her mobility. The former could result in any number of knock-on positive impacts as the people involved got to know each better and thought about other ways they might be able to help.

Stories like that inspire. They illustrate the power of focusing on outcomes rather than mandating processes. A councillor who meets older people in their ward may well be more motivated by that story than by any number of cost benefit analyses and statistics.

But Department of Health Ministers can’t go to the Treasury to make the case for social care armed with anecdotes. They need a robust cost benefit case based on evidence gathered from thousands of people. They need to be able to show cashable savings to real services, not notional Social Returns on Investment.

But how do you quantify the economics of making changes like the grit bin example, without codifying and measuring it out of existence? One solution, I think, is for government to do what it does well

Are Social Impact Bonds (SIBs) the Next Small Thing (NST)

I sometimes think we need a name for those ideas which, whilst they are not necessarily nonsense, get blown up on rather shaky evidence, into the next big thing. They are usually ideas that:

• have a cool-sounding, or failing that mystifying name, usually reduced to an acronym
• apparently have the potential to solve a dizzying range of problems
• are a neat fit with the prevailing political ideology of the day
• have found an articulate advocate or two
• have shaky or limited evidence, and often holes that look bigger the closer you look…

Social Impact Bonds (SIBS) tick all of those boxes. The idea of SIBs is that someone, ideally a private sector investor or even hedge fund, puts up some money to invest in a promising new approach to, say, reducing re-offending, or truancy, or anti-social behavoiur. If the approach works, it generates some savings to the local council, NHS or government. Crime costs the country, so reducing re-offending cuts those costs. The investor gets paid a return on their investment from those savings. The more effective the approach, the bigger the payment. If the approach fails, the investor doesn’t get paid, so it’s the investor who has found the money and taken the risk, not the government. A win all round. Neat.

Here’s where the holes appear.

Direct Payments and care homes

One of the questions being considered for inclusion in next Spring’s social care White Paper is whether people should be able to use Direct Payments to pay for residential care, which at the moment is unlawful. The personalisation group of the White Paper engagement team is leading on this issue, so I’m very much writing about this with my own views, not in any way as co-lead of the prevention group.

My understanding of the rationale for excluding residential care users from Direct Payments, was that people may have been encouraged to buy the same old thing they were being offered before, which would not then amount to a radical change in the choice of provision out there. I’ve written a number of times about the ways in which the state and professionals have proved adept at assimilating the mechanisms of personalisation into their existing world view; I’m sure that having the option of transferring residential care users onto Direct Payments would have added to that problem.

I’m equally sure that the two-tier system which has resulted, with people who continue to use residential care excluded from one of the key aspects of personalisation cannot continue. It just doesn’t feel fair that I should lose a key route to choice and control when I move from receiving home care to a care home. However, I’m equally sure that opening up Direct Payments won’t by itself transform residential care. It will need to be part of re-thinking how care homes work. Community Care’s recent article on care provider Dimensions, which attempted to introduce more choice and control in one of its care homes, shows that addressing staff expectations and practice was more important than introducing an individual service fund approach to personal budgets.

It’s also worth noting that older people have been spending their own money on care homes for years, without the private care homes market establishing a reputation for forging ahead on choice, quality and value. As the Southern Cross debacle demonstrated, being an individual consumer of the product of an uncompetitive industry is not a very empowered place to be.

A colleague objected to a recent tweet in which I asked whether introducing Direct Payments for over and under 65s who use care homes would have very different connotations.

Responsibilities, not just needs?

When I started working in social care, I remember being told about Maslow’s hierarchy of needs. Maslow represented human needs in a pyramid, with basic, physiological needs such as the need to eat at the bottom, followed by the need for safety, the need to feel loved and like you belong, with the need to “self-actualise” – to be all that you can be – at the top. He believed that you had to meet your base needs before you could pursue higher needs, with self-actualisation something you are only in a position to pursue when your physical and psychological needs are fully met. Maslow has been criticised from a number of directions: firstly, putting self-actualisation at the top of the pyramid reflects the aspirations of an individualistic society and particularly perhaps a particular male view of achievement. It was suggested that someone from a more collectivist society might value community acceptance above expression of self. Others have questioned whether there is any real evidence for human needs to be arranged hierarchically at all.

It’s always struck me as one of those ideas which hides a lot of dangers within its common-sense appeal. It’s a short step from recognising that it’s hard to pursue self-fulfilment when your basic needs are not met, to assuming that people who struggle with the most basic functions may not also have the “higher” aspirations. This is self-fulfilling: when people with severe impairments were placed in de-humanising institutions, it was often indeed hard for them to aspire to anything beyond meeting their basic needs and easy to write people off who were able to confound those expectations when they moved to a different environment (see A box of buttons, below).

And it’s not just collectivist societies who might question Maslow’s view of self-actualisation as being at the peak of human aspirations. Maslow saw sex as one of the base needs,

Sharing your life with an ex-offender

Recently, I’ve been looking into the use of Shared Lives with people who offend.

About 8% of the general population is considered to have a learning disability or a ‘borderline’ learning disability. There is little consensus on the proportion of people in prison who have a learning disability, but the University of Liverpool looked at the people in three prisons in England in 2006-7 and found that 32% would be considered to have a learning disability or to be borderline, 6.7% being within the definition of learning disabled used by the Valuing People White Paper. So about 5,000 people with learning disabilities are in prison on a given day using that definition or 6,800 likely to be eligible for community services for people with learning disabilities. However, there are few community-based services for learning disabilities in the UK set up specifically to address offending, and few programmes for offenders or addiction services have been adapted for people with learning disabilities or learning difficulties.

We feel that there is real potential for the use of Shared Lives for ex-offenders, particularly for people who have learning disabilities.  ’Darren’, who has a learning disability, moved in with Shared Lives carers ‘June and Rob’ six years ago when he was 18. He had committed serious sexual offences in his teens which had led to his being completed rejected by his family. Because of the level of risk, probation and social services were unable to find a placement in the whole of the region, other than a service which quoted £5,000 per week