A consultation on learning difficulties services seeks to help most service users to live in the community, while increasing monitoring and support. Mark Gould reports
People with learning difficulties were in the media a lot last year - mostly bad news stories about vulnerable people subjected to poor standards of care that infringed basic human rights. One case concerned a murder.
But after years in an NHS backwater, in the past few months learning difficulties services have seen a flurry of policy activity intended to make life safer and more rewarding for users.
In December, the Healthcare Commission published a damning audit of specialist inpatient services run by the NHS or independent providers for 4,000 people with learning difficulties. It found most services provided poor care standards, with unacceptable national variations. Although they were run by dedicated people with good intentions, quality of care was undermined by a lack of leadership, management, commissioning skills and even a good understanding of basic human rights. Tellingly, most services audited said their commissioning body had not visited in the previous six months.
Three days later a serious case review of the murder of Steven Hoskins, a 39-year-old man with severe learning difficulties, concluded that police, social workers and other agencies missed dozens of chances to protect him over the many months he was tortured, bullied and robbed.
The review said Mr Hoskins should have been under the care of social workers but they had stopped visiting him. Warning signs should have been spotted but lack of co-operation between agencies meant the danger was not picked up.
Although the Healthcare Commission did not uncover stories as horrific as this case, it revealed that shoddy management and institutional indifference were condemning thousands to a tedious existence rather than a rewarding life.
"Even in the best services, the safety and quality of care were not up to the standard expected of modern services," said the commission. It concluded: "[This meant] services operated off the radar of the healthcare system, as a result, people with learning difficulties live in poor physical environments, are offered few choices in how they live their lives and are isolated from their communities."
Concerns included a lack of advocacy, lack of stimulating activities for service users and policies which denied people the opportunity to form relationships. Staff training and motivation were poor, demonstrated by a staggering 25 per cent sickness rate. The NHS national average sickness rate is 4.5 per cent.
Healthcare Commission learning disability lead Fiona Ritchie says trusts allow learning difficulty services to disappear from view because they do not figure in their performance ratings and service users are the least likely to raise the alarm: "Service users do not always complain and also some services are quite isolated so the trusts themselves don't see the bigger picture," she explains.
Centuries of abuse
Learning difficulty services need tough, measurable performance indicators to ensure service users do not slip off the radar. They should include factors such as that services provide each user with an appropriate, relevant care plan showing they are supported and their views are valued, and an end to "campus" accommodation. Where a person has both mental health and learning difficulties, the mental health national service framework should be in use.
Ridgeway Partnership (formerly Oxfordshire Learning Disability trust) chief executive Yvonne Cox agrees many people endured a diminished quality of life because learning difficulties were never a target-driven priority for the NHS. Commissioning and monitoring of services suffered as a result.
Although monitoring is built into the latest performance indicators, Ms Cox warns that if trusts do not start benchmarking and collecting data there will be nothing to build on.
Good performance indicators would measure issues such as a person-centred plan equivalent to the mental healthcare planning approach.
"Indicators should be around things like whether services are responding to an individual. You have to have the knowledge to tell a good service from a bad one," she says. "And that can be by simply looking at how many people were admitted to a service and how many discharged in the same period. If the answer is zero, you should have suspicions."
Coinciding with the Healthcare Commission audit and Hoskins review there has been a range of well-received initiatives aiming to help design neglect and abuse out of the system and give people more control over their lives.
And Ms Ritchie says that while the audit exposed problems, it was done in collaboration with service users, parents and staff all eager to drive forward improvements that had already started.
Care services minister Ivan Lewis says he is determined to end the centuries of abuse suffered by people with learning difficulties.
"People are entitled to be treated with the same dignity and respect as every other member of the community. This means them having good healthcare, a real job, choice over good housing and control over their lives, services and supports," he says.
Mr Lewis says that where specific abuse and neglect had been uncovered in the past - notably in services provided by Cornwall Partnerships trust and Merton and Sutton primary care trust - it was because the service had not modernised.
"It has been policy for over 20 years that, once the old NHS institutions close, responsibility for social care should transfer from the NHS to local government. In most of the country this has happened. In some places, however, it has not and these are often those where services are most outdated. Neither Cornwall nor Merton and Sutton had implemented this policy, for example."
Mr Lewis says proposals to transfer funding for social care learning difficulty services from the NHS to social services would mean those commissioning services would have direct access to the resources they need to improve services. A revised NHS operating framework should provide new cash and guidance will enhance support packages when people move out of the NHS, for example by strong commissioning of community learning disability teams.
"Additionally it sends a clear message to the NHS that their responsibilities towards people with learning disabilities are not about commissioning social care with the old long-stay hospital monies," says Mr Lewis. "They are about commissioning mainstream healthcare that, along with modern specialist learning disability health services, addresses the health inequalities of people with learning disabilities. This should support and underpin social care services commissioned by local authorities."
The Valuing People Now consultation launched in December 2007 will set out priorities for the next three years, building on the 2001 Valuing People white paper on learning disability. This focused on rights, independence, choice and inclusion. But given the damning findings of the Healthcare Commission, many doubt its effectiveness.
Mr Lewis says service users say their needs are being listened to, such as where person-centered planning or direct payment pilots are making the purchase of individual care possible, or living with more independence and control. But he concedes: "Delivery has been patchy and in particular progress on people's physical healthcare and action within the NHS has been disappointing. There have been excellent initiatives in some localities, because of the enthusiasm and commitment of individuals, but we want that innovation to become the norm."
David Congdon, policy head at learning difficulties charity Mencap, feels Valuing People Now is evidence of the 2001 white paper failing to deliver. Too many people with learning difficulties still live in unsuitable accommodation because they have nowhere else to go.
"There are still too many people with learning difficulties living with elderly parents," he says. "The only chance of someone over 40 moving out of the parental home is when they die or when the parents are physically too old to look after them."
"For a lot of people, Valuing People has had a good effect but it has not made much impact on the NHS itself," agrees Ms Cox at Ridgeway Partnership. She says transferring commissioning to local authorities, as suggested by the Valuing People Now consultation, makes sense but that it should not mean health services can absolve themselves of responsibility where there is clear clinical need.
Meanwhile, elements of old-style services still linger. There is only one remaining old long-stay hospital in England, the Sutton and Merton PCT-run Orchard Hill in south London, which is home to some 60 people, of whom some have been resident for more than 20 years.
Its closure was delayed by a judicial review following concerns from elderly parents and carers over where their children would end up. Staff have been working with the residents and their families on plans to move out by 2009.
But campaign group and government estimates put the number of people still in old long-stay institutions or campus accommodation at 2,000-3,000. The government has stated that all NHS campuses must close by 2010.
In November it was announced that organisations with such accommodation could bid for a share of£175m over three years to fund community housing to replace it. Successful primary care trusts and local authorities can spend their share through housing associations.
Ms Cox says her Oxfordshire area eradicated campus accommodation a decade ago. "The notion that people should actually be living their whole lives in the NHS is frankly bizarre. The NHS was never set up to provide people with homes for the rest of their lives, however difficult they might be to care for," she says.
And one Healthcare Commission recommendation is missing from policy: a national service framework for learning difficulty services.
Interim associate director for learning difficulties at Surrey and Borders Partnership trust Andy Erskine says Valuing People promoted the rights of people with learning difficulties and gave government backing to good local work.
"However, it would have benefited from its importance being reinforced through inclusion in the national performance framework," he says.
Mr Erskine says he would have "some anxieties" if future proposals were to transfer all health and social care commissioning for people with learning difficulties to local authorities.
"The health needs of people with learning disabilities are greater than those of the general population and it is still a challenge to ensure people have their health needs recognised and met through mainstream healthcare. Valuing People proposed that specialist health commissioning will still be retained by the PCTs. The issue will be how much money is transferred to the local authority and what constitutes 'specialist' healthcare commissioning," he says.
His trust is seeking new homes for 77 people still in campus accommodation. But Mr Erskine says relocation must not mean people lose out. "Where people need specialist health services and support, this should be available. We are concerned that the NHS campus definition is unhelpful in some instances as it may not adequately take into account a person-centred approach and individuals' human rights."
Mencap's Mr Congdon says transferring commissioning to social services will speed up the move from more institutional care models.
"If social services have the money we will see more emphasis on genuine community provision, people with learning disability living in ordinary houses in ordinary streets. But we have to make sure there is the right level of revenue funding. We know that as social services budgets are very tight there are always going to be concerns about tightening eligibility criteria," he says.
The updated Mansell report on services for people with learning disabilities and challenging behaviour or mental health needs, published last October, concluded that getting services closer to home results in better outcomes.
But Mr Erskine points out that while trusts provide services, commissioners decide placements. So community teams often provide intensive support to people who appear to be inappropriately placed away from their local area. "This causes local resource pressures and demands, with our teams subsidising the inappropriate placement. When one looks at the whole system it is inefficient, with commissioners getting a distorted picture of the purported effectiveness of some out-of-area placements."
Mr Lewis says Valuing People Now will feature a detailed review of learning disability workforce problems. "We will also continue to support the learning disability qualification, which we believe is an essential training component for frontline staff," he says.
Ms Cox agrees there should be a capital investment in staff, who have been let down as much as service users. "Staff feel battered and bruised. The Healthcare Commission audit had evidence that they were trying to do their best in difficult circumstances. There is a lack of training and support and people are just hunkering down and trying to do their best. They need a lift of morale."
On the up: services' rising profile in 2007
May Prompted by Death by Indifference, the Mencap investigation into the deaths in NHS inpatient care of six people with learning difficulties, former chief executive of Guy's and St Thomas' Hospital foundation trust Sir Jonathan Michael is appointed by the government to report on recommendations for action to improve care and treatment.
October New guidance to PCTs on commissioning effective primary care for people with learning difficulties is published.
November Launch of£175m capital scheme to eradicate campus-style accommodation.
Revised version of the Mansell best practice guidance on people with learning difficulties who have mental health needs and/or challenging behaviour is launched.
December Valuing People Now consultation proposes transferring commissioning from NHS to local authorities and sets out priorities for the next three years.
NHS chief executive David Nicholson writes to all strategic health authorities and PCTs stressing that they must have staff with the skills and resources to properly commission and performance manage learning difficulty services.
Find out more
Death by Indifference , Mencap, 2007
Commissioning Specialist Adult Learning Disability Health Services , Department of Health, 2007
Guidance on Services for People with Learning Disability and Challenging Behaviour or Mental Health Needs (revised), Department of Health, 2007
Valuing People Now consultation, Department of Health, 2007