Experts have long said learning disabled people should not be placed in hospitals such as Winterbourne View. That they still are reflects failures to support them in the community, finds Vern Pitt
Three and a half million people watched in horror as scenes of physical, verbal and emotional abuse of people with learning disabilities and challenging behaviour played out on their televisions earlier this month. BBC Panorama’s investigation into the care at Winterbourne View, a private hospital in Bristol run by Castlebeck, came as a surprise to many. But it was not a surprise to Jim Mansell, emeritus professor of learning disability at the University of Kent.
“Special institutions and residential homes for people whose behaviour presents a challenge will be expensive but of poor quality and will attract public criticism,” he wrote in 2007, in a report for the government which is considered to be the authoritative guide to how services for those with challenging behaviour should be structured.
He had come to a similar set of conclusions when he wrote his original version of the report in 1993. Paraphrasing his earlier conclusions, his 2007 report read: “The available research evidence showed consistently poor quality of life in hospital, Research since 1993 has confirmed this judgment.”
Seeing Mansell’s conclusions borne out on screen in the most extreme way raised the question for many in the sector of how people with learning disabilities were still ending up in hospital services. A government report last year found that admissions to these services were actually on the increase.
While experts admit that admissions for short-term assessment and treatment may be appropriate for a small number of people, the consensus is that learning disability hospitals are not the right option in most cases.
Hospital admissions are often the result of professionals and families being pushed to breaking point by the pressures of caring for a challenging individual. “What tends to happen is the typical Friday afternoon crisis phone call [from a carer to the authorities]. A learning disability hospital can respond to that local authority or primary care trust with a vacant bed,” says Bill Mumford, chief executive of learning disability service provider Macintyre. “It’s an emergency response.”
“It’s often lazy commissioning,” adds Carol Povey, director of the National Autistic Society’s Centre for Autism, which develops good practice for the client group. “Sophisticated commissioning is about designing and developing a package of support around the individual’s need. That takes time and resources but it will often save both in the longer term.”
In the absence of emergency planning, professionals turn to hospital services, often in the private sector. These continue to exist because they operate outside the NHS and therefore cannot so easily be banned by ministers, says Rob Greig, chief executive of the National Development Team for Inclusion (NDTi) and the government’s national director for learning disability from 2001-8.
Greig says there has been inadequate investment in the skilled staff needed to help people in the community, despite multiple reports recommending just that. NDTi guidance on commissioning services for people who challenge, published in October last year, included staff training as a key component of good commissioning.
However, he adds: “When we have both local authority commissioners reducing posts and expertise at commissioning level to deal with budgetary constraints, and PCTs restructuring and cutting posts in preparation for moving to the GP commissioning consortia, that investment looks unlikely. While you can’t say that Winterbourne View is a consequence of any government policy, current government policies will risk exacerbating the situation.”
Government spending policies are also accelerating the closure of day centres, which in turn is increasing pressure on families, says Alex Fox, chief executive of NAAPS, the umbrella body for shared lives placements. Fox says that day centres are often replaced by personal budgets for service users but they don’t necessarily provide people with social networks, leaving them more isolated. Sometimes there is little replacement of support at all, Fox adds.
But budget restraint and personalisation could drive investment in community services by forcing councils to prioritise spending, argues Andrea Pope-Smith, chair of the Association of Directors of Adult Social Services’ learning disability network. “We are moving from one model of service delivery to another,” she says. “No one is releasing the money for me to do that. Having a decreasing budget puts more pressure on that but forces the question of what is the most effective service and what delivers the best outcomes.”
Regardless of funding, there are ways in which referrals to hospital can be avoided, says Fox. “It’s about where we are prepared to take risks. Removing someone from a locked setting is often seen as a risk and what’s not considered is the risk of keeping them in that institutional setting,” he says. Fox says social workers should be focusing on balancing these competing risks and not being afraid of community support.
One risk they will have to balance is the community into which placements are made, often in a supported living environment. Maurice Bates, co-chair of the College of Social Work, recalls a number of placements breaking down because of hostility from other residents. He says effective early communication can alleviate a lot of these tensions.
Early intervention to support individuals is also key, says Povey: “People’s situations change and go through phases and it takes a skilled practitioner to spot the early signs of that and get other support or interventions, such as psychological support.”
Bringing about change at a commissioning level can be more difficult, though. Commissioners and providers need to work together but are held back by commissioning rules, says Mumford. Firstly, it’s difficult for providers to invest in innovative community services unless they know they will gain referrals. But then commissioners face the challenge of market-testing a service price that often has no direct comparison.
Commissioners need to work closely with providers and test against services out of their area or the “next best thing” to support innovation, says Mumford.
Experts from across the sector were quick to denounce institutional models of care following Panorama. But perhaps the biggest lesson from Winterbourne View is the need to overcome barriers to developing viable alternatives to hospital care if this most vulnerable client group is not to slip through the net.
PROTECTING PEOPLE FROM ABUSE
Learning disability and challenging behaviour expert Jim Mansell sets out an eight-point plan for preventing abuse in services for this client group
1 Support people individually, not in groups
The essence of good care is individualisation. This is because the causes of people’s challenging behaviour are different, the way they are helped needs to be different and the goals of their support are different. It is also because good care requires staff to look beyond the person’s challenging behaviour, however difficult and unpleasant that is, to see the person, to empathise with them and to like them.
Without this underpinning relationship, staff will find it much harder to support the person well. If people with challenging behaviour are grouped together, it makes it harder for staff to see them as individuals.2 Recruit staff who care
Some staff who abuse service users are people who could be screened out at interview. They are people who don’t empathise with those they care for, whose comments betray inappropriate and unhelpful attitudes and who, when they talk to users, are not sympathetic and sensitive.
Recruitment processes need to test whether people are suitable – so that means not just using interviews but involving residents in staff selection. If recruitment difficulties lead to staff shortages, that suggests that pay and conditions need improving.3 Train staff to support people well
Staff need training above the statutory minimum, and not just in reactive management techniques – what to do when someone attacks someone else – but in the preventive strategies of positive behaviour support, including good communication, person-centred planning and enabling people to take part in activities at home and the community.
These preventive strategies are as important as reactive management, if not more important in the long run. Training in these areas is widely available and everyone working with someone with challenging behaviour should have it.
4 Provide good practice leadership
Training is not much use unless it is reinforced on the job as part of everyday practice. This means that first-line managers shouldn’t be office-bound administrators but mentors and coaches to the staff they manage, helping make sure that the quality of support they provide is good.
This means selecting and promoting first-line managers on the basis of their skill as coaches and mentors, not their ability to do the paperwork.
5 Focus the organisation on quality
Staff and first-line managers follow the lead given by senior managers. If senior management demonstrate by their words and deeds that quality of care is secondary to paperwork or the balance-sheet, then staff are likely to focus on those things to the detriment of quality of care.
Persuading staff that senior managers are really focused on quality of care means constant attention to it in every aspect of the organisation’s work.6 Commission the right model of care
Challenging behaviour is often a long-term issue requiring careful management. People might be able to put up with a hospital routine for a few days or weeks, but in the longer term people need a proper home where they can live out their lives with whatever support they need. Crisis management arrangements need to be local and to place as much emphasis on supporting people where they are as on finding new alternatives when things go wrong.
Although abuse does occur in small homes it is more likely in segregated institutions.7 Hold private sector services to account
There are differences between NHS and private sector services.
Private assessment and treatment units are bigger, fully occupied more of the time and have lower levels of staffing. They have fewer visits to patients, use more seclusion and physical restraint and have more locked areas than NHS units. They have more complaints in more services from users and, in some types of service, more complaints from relatives and adult protection referrals.
Commissioners must ensure that all services they buy are of good enough quality.8 Focus inspection on service users, not paperwork
Inspectors can’t be watching all the time, but they can look for the factors identified here. Most of all, they can spend time in the living situation, talking to residents and staff and looking at the quality of relationships and activities.
Light-touch inspection, in which the inspectorate relies on statistics or self-assessments to identify problem areas, doesn’t work here because there are no useful statistics and the self-assessments are often self-deluding. There is no substitute for people from outside keeping a constant eye on what is going on.
How No limits helps people regain control of their lives
Learning disability service provider Macintyre is pioneering the kind of services designed to keep people out of institutional care. Its No Limits team offers intensive support to individuals who are challenging to traditional services.
“There isn’t a typical case,” says Sam Collier, project co-ordinator at No Limits. However, he adds: “We always see a reduction in challenging behaviour with the people we work with. There are so many resources within local communities which people without learning disabilities can access, which people with learning disabilities can access too but they just need a bit of support.”
Collier recounts the story of a client who was sectioned when he started working with him four years ago but is now living in a shared supported living environment in the community and has built a substantial support network of friends around him. It’s a change driven by an all-encompassing focus on his wishes and the use of universal community services.
“He is in control of what he does every day; he is not bound by the rules or restraints of any kind of traditional provision,” says Collier. Now the cost of his support has also fallen substantially.
On average, support from No Limits costs £1,800 a week. Local authorities can expect the cost of a package to reduce by 17% over the course of the first year.
While it only supports eight people a year, that support is vital for those individuals to keep them in the community.
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