Care Quality Commission
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Watchdog calls for sweeping and sustained changes to neglected services for people with learning difficulties

Healthcare Commission says national performance measures needed after first audit of services for people with learning difficulties

The Healthcare Commission said today (Monday) that sweeping and sustained changes are needed to services for people with learning difficulties if they are to meet the standards expected in the 21st century.

It published the first audit of specialist inpatient healthcare services for people with learning difficulties, which included one of the largest inspection programs it has ever carried out.

The Commission found that most services for people with learning difficulties provide poor standards of care and there are unacceptable variations in the quality of services throughout the country.

It said that, even in the best services, the safety and quality of care were not up to the standard expected of modern services.

The Commission did not find evidence of physical abuse in any service. But it did refer six services to local authorities under Protection of Vulnerable Adults protocols following concerns raised about the care of individuals or overall standards of care.* These concerns are being addressed.

The Commission said that while services are driven by committed staff working in difficult environments, significant institutional failings are depriving people with learning difficulties of human rights and dignity in many instances. It said services operated off the radar of the healthcare system, with poor leadership, poor training and no framework to measure the performance of services.

As a result of this, 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. It found many services where planning of care was poor and did not involve people with learning difficulties.

The audit was designed and carried out involving people with learning difficulties, family carers and people working in the sector. It aimed to create an accurate picture of specialist inpatient healthcare services for people with learning difficulties throughout and promote improvements in the quality of care.

The Commission's audit covered 72 NHS trusts and 17 independent organisations providing 638 individual services. The services support more than 4,000 people with learning difficulties and include long-stay hospitals, campus-style accommodation, acute assessment and treatment centres, short-break and secure facilities. Each service typically supports six to 12 people.

The Commission carried out inspections at 154 services covering 68 of the 89 organisations. It made 2,548 recommendations to improve aspects of care. Services have been required to develop action plans to address the recommendations and strategic health authorities have been asked to monitor their implementation.

Eighty-five per cent of services have already reported that they have made or planned changes as a result of the audit such as improving training, increasing the involvement of people with learning difficulties and enhancing physical environments.

The Commission said it would carry out a series of spot checks on services to ensure improvements are made, including at services provided by the 21 organisations not visited as part of the audit. It will also use the audit findings in the next annual performance ratings to ensure organisations are held to account for the services they provide for people with learning difficulties.

In addition, the Commission plans to work with others to collect systematically information on the performance of services for people with learning difficulties, which it will also use in the annual health check of NHS trusts. This is likely to cover planning of care, use of individual action plans and progress towards the closure of campus accommodation.

The Healthcare Commission also announced plans to carry out a national review of how well primary care trusts and local authorities buy services on behalf of people with learning difficulties, working with the Commission for Social Care Inspection. This work will build on guidance issued recently by the Department of Health on buying specialist healthcare for people with learning difficulties.

"The first thing to say is that there is nothing in this audit that should lead to widespread concern about safety. I am relieved to say that we have not found another situation like the one we found in Cornwall . But we will remain vigilant on this on behalf of service users and their families.

"This report, however, does paint a bleak picture. Services for people with learning difficulties are not generally unsafe but they are poor. These services are regularly neglected and too often old-fashioned and institutional.  

"I want to be clear that there are many members of staff working hard for the people they serve. But they operate in a system where too many people are not given choices and control over their lives. Care is not personalised, living environments are poor and activities are few."

She said: "We want this report to be the first stepping stone to enduring change. This is a long-standing problem and we don't want simply to deliver another depressing assessment and then move on.

"There has been nothing in place to assess systematically the performance of these services. That's why we want to introduce measures that will hold organisations to account in a way they have not been before. We believe this will make a real difference to service users and their families."

Anna WaMs Walker added:  "The government has already begun to modernise services through the closure of all campus accommodation by 2010. We want to ensure this change happens swiftly and with the needs of people with learning disability at the forefront of any change."

The audit found that ... 

... Insufficient attention is paid to safeguarding vulnerable people across all aspects of their care. 

Until there are appropriate proper policies, procedures and training in place in all services, the Commission cannot be assured that the human rights of people with learning difficulties are being upheld.

Skilled people advocating on behalf of people with learning difficulties is an important aspect of safeguarding. Yet, just over a quarter of people in the services visited as part of the audit had spoken to an independent advocate in the previous six months.

... Care is poorly planned and does not involve people with learning difficulties.

If people with learning difficulties are to lead more independent lives following assessment and treatment, planning of their care must be improved, updated frequently and made more relevant to the individual. In most services, we saw insufficient evidence of this or that people with learning difficulties were involved in developing care plans. 

... Services are not monitored by the organisations that commission them.

Primary care trusts and local authorities commission services from the NHS or independent providers. Yet most services involved in the audit said the commissioning body had not visited in the previous six months. In the few services that reported good involvement by commissioners, this relationship was said to have improved the quality of services.

... There is a lack of stimulating activities and opportunities.

Approximately half the services provided people with some opportunity to move around and leave the site. However, on the whole, the range of activities offered was limited.

Very few people had the opportunity to develop friendships or relationships. Half of the people in the services had received a visit from family or friends in the last month and many had never received a visit.

... There is a lack of leadership.

Only half of the management boards that responded to the survey said they had adequate arrangements in place to monitor services for people with learning difficulties.

Training of staff was poor and around one in three staff members were reported to be temporary staff from agencies. Often agency staff had not undergone proper criminal checks. A quarter of staff in services for adults with a learning difficulty had had a sick day in the previous month, compared to 4.5% across the NHS. 

... Physical intervention practices were appropriate.

Sometime it is necessary for staff to manage people's behaviour by intervening physically. On the whole, the audit found that there were appropriate policies and practices in place. More than half of services had not used physical intervention at all in the previous six months.

A large majority of services used medication to control behaviour. The audit found that most services had good procedures in place around the prescription of medication. However, the Commission is concerned that there is little evidence to support the use of such medication to control behaviour of people with learning difficulties.

... Residential care is provided by health services in institutionalised settings.

About 16% of services are long-stay campus accommodation, where people consider the service to be their home. People with learning difficulties do not necessarily receive speciality healthcare in these settings. This raises the question of whether these services should be provided by the NHS.

* Information on the six services referred under Protection of Vulnerable Adults protocols can be found on page 49 of the report.

More information about the audit, the report and easy read summary

Notes to editors:

Consultation during the audit showed that "learning difficulties" was the preferred term. In the government's white paper Valuing People it was defined as having a significantly reduced ability to understand new or complex information and to learn new skills and as having a reduced ability to cope independently.

About 169,000 people in use services for people with learning difficulties. Most live within family homes or in care homes regulated by the Commission for Social Care Inspection (CSCI) The Healthcare Commission's audit looked particularly at specialist inpatient healthcare services provided by the NHS and independent organisations not registered with CSCI, which support more than 4,000 people with learning difficulties.

People who find themselves in specialist healthcare services for people with learning difficulties (those regulated by the Healthcare Commission) these services do so for many reasons. For example, a break down in the placement where they are living, a mental health problem, a need to be assessed for changes to medication, or they may have come into contact with the legal system. Many adults are also in residential services, further to the move away from institutional care in hospitals to the provision of campus style provision.

The definition of "campus accommodation" and all other relevant terms can be found on page 83 of the report.

Information on the Healthcare Commission

The Healthcare Commission is the health watchdog in . It keeps check on health services to ensure that they are meeting standards in a range of areas. The Commission also promotes improvements in the quality of healthcare and public health in through independent, authoritative, patient-centred assessments of those who provide services. 

Responsibility for inspection and investigation of NHS bodies and the independent sector in rests with Healthcare Inspectorate Wales (HIW). The Healthcare Commission has certain statutory functions in which include producing an annual report on the state of healthcare in and , national improvement reviews in and , and working with HIW to ensure that relevant cross-border issues are managed effectively.

The Healthcare Commission does not cover as it has its own body, NHS Quality Improvement Scotland. The Regulation and Quality Improvement Authority (RQIA) undertakes regular reviews of the quality of services in .  

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