Three years ago the shocking abuse at Winterbourne View, a private hospital where people with a learning disability resided to receive “assessment, care and treatment”, was vividly shown in a Panorama documentary.
Carers there were poorly trained and managed, and there was a lack of appropriate leadership. The Care Quality Commission was heavily criticised for not responding quickly enough to concerns when they were raised.
The new CQC inspection process contains five key lines of enquiry: is the service provided safe, effective, caring, responsive and well led? Is the service safe in relation to protecting people from physical, psychological or emotional harm, abuse, coercion and neglect?
To be effective, a service must provide care and treatment that take into account the person’s chosen outcomes and enable a good quality of life. To show they are caring, services need to demonstrate people are treated with kindness, dignity and respect. They need to show they are meeting people’s needs at the right time, in the right place, with their involvement and concerns addressed and acted on positively.
Being well led refers to the leadership and governance of organisations at various levels focusing on high-quality care and a supportive, fair culture. These, along with the increased use of experts by experience and learning disability professionals should lead to a fuller picture of care provision.
Every day more than three people with a learning disability die of avoidable causes in England’s NHS hospitals. The challenges faced by them and their families is that few health and social care professionals are trained in how to work with them. Individuals with a learning disability regularly struggle to accept or interpret what a person is saying to them or change the professional’s communication methods to enhance understanding of the patient’s needs. As a result, health needs are not adequately met. A further problem is that it is common for health professionals to misinterpret a person’s behaviour as being part of their disability rather than exploring a health reason for that behaviour change. These issues can be addressed by employing learning disability nurses to work alongside colleagues.
People with learning disabilities are often admitted into assessment settings and stay for long periods because there are no clear care or discharge pathways in place. Healthcare and treatments must be provided in more localised, personalised settings that are as close as possible to where patients reside to make sure their support networks remain intact. There are fewer than 5,000 learning disability nurses working within the NHS at present. These numbers need to rise because where they work in GP surgeries, hospitals, specialist services and other community health clinics, the care and outcomes for people with learning disabilities are greatly improved.
A national commissioning framework that is robustly created with services monitored and inspected in the manner set out by the CQC should ensure local delivery of better care leading to healthier futures. More learning disability nurses need to be employed and trained to take up strategic clinical, educative and commissioning roles and they also need to be in senior positions to ensure there is effective transformational leadership. Only then and in partnership with experts by experience will the landscape of care and outcomes significantly improve for those with a learning disability.
Jim Blair is consultant nurse intellectual disabilities, Great Ormond Street Hospital; associate professor intellectual disabilities, Kingston University and St George’s University of London; and health adviser, British Institute of Learning Disabilities