Serious concerns about the care received by people with learning disabilities and autism in the NHS have been growing since the 2011 scandal at Winterbourne View Hospital. It was the sustained abuse of young people with learning disabilities at this hospital that provoked a serious case review necessitating fundamental changes to the care of these patients in the health service (Flynn, 2012).
The publication of the case review prompted the Care Quality Commission (CQC) to launch a programme of risk-based random, unannounced inspections of institutions providing care for people with learning disabilities and challenging behaviour. The inspections showed that there were deficiencies in care for people with learning disabilities across the country (CQC, 2012).
In light of these revelations about the suboptimum care of people with learning disabilities or autism, the Government is seeking ways to ensure that health and social care professionals have the appropriate training to more fully understand the needs of this population, and to make reasonable adjustments in care delivery to provide support.
It has launched an open consultation (Department of Health and Social Care (DHSC), 2019) to consider issues around the training and development of staff on how to better support these vulnerable service users.
Background
Throughout history, the way society has treated people with learning disabilities and autism has not always been equitable (Open University, 2019). Throughout most of the 19th century people did not distinguish between individuals with a learning disability and a mental illness. By the turn of the 20th century society preferred to warehouse these vulnerable people in special hospitals that were often situated in the countryside far from urban conurbations. This was because there was an innate fear that they might somehow adversely affect society. Additionally, Baly (1994) highlighted the links between eugenics and Hitler's quest for a pure Aryan race that left little room for those considered ‘defective’ in any way.
Today, health professionals such as nurses endeavour to provide optimum health care for service users with learning disabilities or autism. It is important to stress that individuals will respond differently to changes in their care environment. For example, some find the experience of being in hospital frightening and may reflect this by displaying outbursts of challenging behaviour. This may be because, compared with the general population, they have elevated degrees of need, many of which are unrecognised and unmet. In a study investigating the experiences of adults with learning disabilities and their carers in general hospitals, Gibbs et al (2008) showed that anxiety and fear, communication and behaviour problems were precipitated by the hospital admission.
Nurses and other health professionals endeavour to do their best in caring for this group of patients; however, this does not stop things going awry. The Government considers this situation can be improved by giving health staff additional, appropriate training to enhance the skills and knowledge base for supporting people with learning disabilities or autism when they need health care.
This may reflect the reality that in acute hospital settings care is delivered by nurses whose experience with, and education about, this patient population is limited by the lack of education and experience. For example, there is little direct reference to the specific care of people with learning disabilities or autism in the still current 2010 adult field of practice curriculum (Nursing and Midwifery Council, 2010).
Similarly, within the child branch, a literature review of disability content within nursing curricula showed these to be overloaded by acute care physiological teaching, exposing gaps in the contemporary curricula, lack of faculty expertise, problems with teaching methods, and a focus on the medical model (Ilkhani et al, 2016).
The Government's aspiration to deliver additional training
The Government considers that the challenges faced by people with learning disabilities and autism in accessing health care can be alleviated if staff, who need to make reasonable adjustments to working practice, are given additional training. The training must, however, be clear about the differences between learning disabilities and autism.
The current Learning Disabilities Core Skills Education and Training Framework (Skills for Life et al, 2016), which is currently undergoing review, identifies the different levels of skill and knowledge staff need to support people with learning disabilities. It is proposed that the content of any mandatory training programme should ensure that staff attain the learning outcomes they need for their role. It is important to stress that this training is not as yet mandatory in the way that safeguarding training is. However, this training framework sets out the essential skills and knowledge necessary for all staff involved in learning disabilities care and identifies the key skills and knowledge for roles and team members.
The new Government initiative stresses that priority for additional training should be placed on staff members who actually provide care to this patient group and who will need different levels of training, based on their role. The framework consists of three tiers of skills and knowledge:
In principle, employers are required to ensure that their staff have the core skills and knowledge to care for, treat and support people with learning disabilities. However, in practice this does not always happen, which is why the Government is launching its public consultation on mandatory learning disabilities training for all relevant staff. The Government also expects the training to educate staff on the practical application of:
The proposal for mandatory training seeks to develop the practical skills of the workforce to ensure staff can make reasonable adjustments in practice to improve the way people with learning disabilities and autism of all ages are supported. Reasonable adjustments that nurses might make when caring for this patient population include:
Consultation
The Government wants to know what nurses and others think about its proposals for mandatory training, with reference to the content, the delivery, and evaluation of such training (DHSC, 2019). The consultation closes on 12 April 2019 and nurses can respond in a number of ways:
Conclusion
It is likely that additional and ongoing training pertinent to the care of people with learning disabilities and autism will become mandatory for a large group of healthcare workers across the fields of practice, so make sure your voice is heard.