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 Continue reading

Setting the pace in Derby

Promote Ability Community Enterprise, known as p.a.c.e, is a community interest company set up by Debbie Jones and Craig Fletcher.  Through their 23 years of experience of front line work for the City Council and nine years working with voluntary and community organisations they felt there was a gap in services for disabled people to improve their health and quality of life choices.

From the seed of the idea, developed whilst sitting in the pub, along with donations, a helpful benefactor, support from friends, family and the community and a lot of hard work they now have a centre, with a gym, workshop and café.  They have over 20 clients per week, both self-funders or personal budget holders who buy assistance with support planning, life coaching, woodwork tuition and gym instruction from the three full time workers. Also their café is open to the public.

In the future they are eager to move towards rehabilitation services and are looking to work with local health services to develop preventative and re-enablement support. Find out more about them at: www.pacederby.co.uk

All parties have to work together this time

As a member of the Care and Support Alliance, Shared Lives Plus was one of the signatories of the letter in today’s Telegraph which has generated lots of coverage across the media. The letter says,

SIR – As a society we face a growing care challenge. We should celebrate the   fact that we are all living longer lives, particularly disabled people and   those with long-term conditions. But the unavoidable challenge we face is   how to support the increasing number of people who need care. It is a   challenge which we are failing to meet – resulting in terrible examples of   abuse and neglect in parts of the care system.

This comes at huge cost to the dignity and independence of older and disabled   people, but also to our society, family life and the economy. An estimated   800,000 older people are being left without basic care – lonely, isolated   and at risk. Others face losing their homes and savings because of soaring   care bills.

Disabled people are unable get the support they need to live their lives   independently and be part of society.

Businesses are losing increasing numbers of experienced staff who are forced   to give up work to care for older or disabled relatives. These carers can   then be pushed to breaking point, providing round-the- clock care. Our NHS   is also paying the price, as a lack of support leads to avoidable hospital   admissions and then keeps older and disabled in hospital beds because they   cannot be cared for at home.

We have a duty as a nation to change this – but it requires political   leadership.

This summer, the independent Dilnot Commission into Funding of Care and   Support published its recommendations. In response, the Government has   committed to publishing a White Paper on Social Care by April. With new   cross-party talks on the future of care, we are closer than ever to reaching   a new consensus.

We urge the Government and the other party leaders to seize this opportunity   for urgent, fundamental and lasting reform: delivering a social care system   which can provide the well-funded and high-quality care and support we would   all expect for ourselves and our families.

Is there a future for building-based services

A colleague recently posted a question on a LinkedIn personalisation forum about whether there is a future for building-based services.

I think we are too simplistic when we come to make decisions about building based services, particulalry when it comes to whether to keep or close them. Such services actually have three distinct parts to them, and we need to make at least three separate decisions about them:

1. There is the building, which could be used in all kinds of ways by all kinds of people, including some of the people who currently use it, but also others in the community.

2. There is a set of services, some of which may be excellent, others less so. Some may be valued by some, but not all, of the current and potential users. Some may be best provided in the current building, others better provided elsewhere.

3. There is a set of relationships, some of which may be lifelong.

It is these relationships which are most often overlooked in decision making. This is why there are supermarket cafes which have become de facto day centres for people who are bored and lonely and missing their friends. People should have choices over their relationships. Day centres and the like reduce those choices by lumping everyone together, but so do approaches which assume that everyone is always best off doing everything on their own, or in ‘the community’, particularly when the community proves hard to find, or not very interested in them. There is often a lot of work needed on finding and forming people’s networks and communities, not just a ready-made community out there for people to slot neatly into.

People who use services and potential service users, and their families, should all have a say in planning to maintain and develop all three aspects of existing services, not just the most obvious aspects of them.

Time to ditch the RAS? Part 2.

In an entry a couple of weeks ago, I identified three problems with the current way in which an individual’s needs are assessed, then their ability to pay, and then their social care entitlement converted into a cash amount, which they are helped to spend. I suggested that, even done well, the system had these problems:

  1. The assessment of your needs is based on you proving how bad things are. You might even have to wait for things to get worse before you become eligible for expensive support, when making cheaper, preventative support available would have been much more cost-effective.
  2. The addition of extra assessment and planning stages to the existing system, in order to convert your needs into an appropriate cash personal budget, has added bureaucracy. There is actually more gatekeeping than ever in some areas.
  3. The process focuses everyone on the money, which makes it harder to focus on outcomes and being creative.

I promised to think up some solutions to those problems, and asked you for yours.

The comments you were kind enough to post were very interesting. There was some consensus around the problems. No one believes that giving people the chance to control the money that is spent on them is the wrong aim, but lots of people would like it to be simpler, quicker and fairer to get to that amount of money, with fewer restrictions on what it is spent on. Several people feel that there is no way round the need for a RAS type system, and we should accept that reality and focus on making it work. If you put identifying the service first, you’ve returned to the old system; if you put identifying the budget first, you need to base that budget on costings based on a range of likely services. Few contributors, I felt, could articulate a practical third way.

Resource allocation systems build in two opportunities for professionals to exert control: first in setting an indicative amount, then in signing off (or not) the final budget. If it is never going to be possible for the state to relinquish budget sign-off completely, how could that control at least be eroded or tempered, without leading to bankrupt councils?

At a corporate level, council finance directors cannot relinquish overall control of budgets: it’s their job not to overspend. There is a tension between this need to exert control at a population level and the desire to relinquish budgetary control at the individual level. We could reduce that tension in a couple of ways:

First, and least likely, we could give council finance directors a breathing space where, if they can produce balanced budgets over five years, their budgets can be guaranteed for that period. This would allow councils to invest in prevention and to look more kindly on individuals who need to invest in non-traditional interventions which might prevent greater need later on. It’s hard to imagine this happening. The evidence base for many preventative services is weak and the government would need to find money up front and underwrite the losses if council’s plans didn’t work out.

Secondly, we could help people who use services act a little more like finance directors, Continue reading

Care: industrial scale or cottage industry?

There are, we are often reminded, 30,000 residents in Southern Cross’s care homes. There is an argument about to what extent it would affect those residents if Southern Cross’s approach to funding its expansion, which relied heavily upon property speculation during the boom, ultimately led to its demise as a company.

Some people say it wouldn’t make any difference to residents – if a care home is viable it will simply be sold on to another provider. The Association of Directors of Adult Social Services have emphasised the need for councils to continue sending residents to Southern Cross homes to keep the company afloat.

But if it makes no difference to residents whether or not the company stays afloat, then why does it matter if it continues to have enough ‘customers’? Whereas, if Southern Cross going bankrupt will make a difference to them, then it cannot be in an individual’s interests to be “sent” to one of their homes. 

Individuals are not commodities, to be traded by councils and care providers, even in the interests of what might be considered the greater good. Councils are under an obligation to individually assess older people and to support them to make the best choices about care for them. A blanket recommendation to push people towards a care provider which may not be able to offer stability is unacceptable.

I think it’s hard to maintain the argument that residents have nothing to fear from Southern Cross going bankrupt. In order to attempt to stay afloat, the company has just cut 3,000 front line caring jobs. In other words, here we have yet another situation in which rash decisions made in order to maximise profits result in negative consequences for people who had no part in those decisions. It was of course, those residents’ money (or in the case of those whose care was state-funded, taxpayers’ money), which was hived off in the good years into the pockets of bosses and shareholders.

The Southern Cross crisis, coupled with the Winterbourne abuse scandal uncovered by BBC’s Panorama, should initiate a pause for thought about the relative risks and benefits of industrial scale care and support Continue reading

A box of buttons

The other day I met the outgoing and much respected national Director for learning disabilities at the Department of Health, Anne Williams, who told me a story that made us both a little tearful.

Anne had met a lady who’d lived for countless years in a long stay hospital for people with learning disabilities. She had no speech, never went out and shrieked whenever someone approached her. The one thing she liked was her box of buttons which she sat and ran her fingers through.

Anne met the lady after she’d left the hospital and was living in a small shared home. In a short space of time, her life had improved immeasurably. She was able to interact with people, no longer shrieking in distress when approached. She had used the bus for what people would have assumed was the first time, if it hadn’t been clear that she remembered how to use it, probably from memories of going out as a child. Rather than receiving whatever was on the hospital menu that day, she was able to tell Anne what she had chosen for her lunch by taking her to her fridge and laying out her choices on her kitchen table.

To think that, needlessly, that lady’s life had, for decades, been reduced to a box of buttons, was what we found so moving about that story.

Now there are few long stay hospitals. Whilst most are staffed by good people doing their best, the Winterbourne scandal Continue reading

Panorama expose #2

Thanks for the comments to my previous blog. There’s been lots of reaction to the programme, including learning disability organisation BILD calling for an urgent government review of the legislation and inspection process (see the article in today’s Society Guardian).

Another article in the Guardian, on ‘mate’ crime, shows that it isn’t only institutions which can be breeding grounds for abuse. But I agree with Mencap that there is no place for locked ‘hospitals’ housing 24 people. The £3- 3500 per week spent on housing patients in an environment with no attempt to provide any semblance of ordinary life, staffed by unskilled, unqualified workers, could have purchased fantastic community based care. By way of comparison, Shared Lives costs around £250- 450 per week. We have great case studies of people who have been labelled ‘challenging’ when living unhappily in institutional care thriving without incident in a Shared Lives setting. For instance, South Tyneside recently saved £50k per year on the cost of one ‘challenging’ individual’s support.

This morning we hear that four people have been arrested. Why only four? Continue reading

Panorama’s Castlebeck expose

I’m sure anyone who watched Panorama tonight would have been appalled at the systematic and violent abuse of adults within a Castlebeck facility supposedly offering care and rehabilitation for people with learning disabilities and complex needs. The Castlebeck ‘hospital’ (Winterbourne in Bristol) secretely filmed is a locked unit housing 24 adults in conditions in which there was nothing for them to do except wait for the next round of abuse from staff, which included assaults, cold fully clothed showers, water poured on people outside during Winter and constant threats and intimidation. Arrests have now been made. This ‘care’ cost the taxpayer around £3000 per patient per week. Inspectors, CQC, failed to intervene despite three allegations of abuse from a senior nurse and a recent conviction for a staff member caught abusing a patient. They have apologised and propose to carry out 150 unannounced hospital inspections. Ironically, Castlebeck boasts it is the winner of the HSJ/ Nursing Times Top 100 Healthcare Best Employers award 2010.

Deeply depressing. How many Winterbournes are out there amongst the remains of the UK’s long stay institutions? No form of care and support is immune from abuse, but the Castlebeck horror story illustrates the real risks in institutional care which is locked away from view and makes no attempt to value people as individuals or to help people aspire to ordinary, independent living. The perceived risks of support being led more by individuals themselves and of community-based support such as Shared Lives, should be balanced against the protection they offer from institutionalisation.

This shocking case also illustrates the need which is common across social care – for everyone to have an independent advocate to whom they can have access whenever they want and who will speak up for their rights come what may. Advocacy simply isn’t part of the current system and, at a time when care and support is supposedly being reformed to give people ever greater choice, the decreasing availability of support to make choices is a gaping wound in our sector.

Something that has left a really bad taste for me though, is not just the failures of the social care sector, but also the failures of the BBC team Continue reading

Hits and myths

Thanks for all the great responses to my blog on the myths of personalisation (many of them members of the excellent ‘Personalisation Group to revolutionise social care’on the networking site, LinkedIn). I was told about an example of one of the myths in action today: a council who had decided that direct payments were now the only way a certain group of people could access support, thus excluding them from the excellent local Shared Lives service, which is provided directly (‘in-house’) by the council (and you can’t use Direct Payments to buy an in-house service). Direct Payments as a way to limit choice – well done guys.

The solution to this is easy – people can use a personal budget to purchase the in-house service, then take anything left over in their budget as a Direct Payment, if they want to purchase something else. But I suspect whoever made this rule has an eye on the government drive (they don’t call them targets any more!) to increase Direct Payment take-up. I wonder if there has ever been a target set, which doesn’t encourage someone, somewhere to do the opposite thing to that which the target setter intended.

Anyway, thanks to your comments,  I can add to my list of six myths. Continue reading