How to help families lead healthier and happier lives
In recent years there has been much controversy about how healthcare staff cope with people with learning disabilities who display challenging behaviour
In recent years there has been much controversy about how healthcare staff cope with people with learning disabilities who display challenging behaviour.
The issue was highlighted in 2011, when a BBC team secretly filmed misuse of physical restraint that amounted to the abuse of residents at Winterbourne View assessment and treatment hospital, Bristol.
The resulting Panorama documentary prompted the Department of Health (DH) to issue last year’s guidance on physical restraint and seclusion as last resorts
This year, the National Institute for Health and Care Excellence (NICE) has published guidance on the management of challenging behaviour in people with learning disabilities.
The guidance is relevant to the care of people with learning disabilities and behaviour that challenges of all ages, including children, young people and adults.
The guidance covers a wide range of topics, including support and interventions for family members and carers, assessment of challenging behaviour, and production of detailed written behaviour support plans to help manage such behaviour.
It also states that staff should no longer rely on the administration of antipsychotic medication to this vulnerable group of clients, but should focus more on early interventions.
Topics covered by the guidance are set out at the end of the article.
Director of NICE’s centre for clinical practice Mark Baker says the guidance was developed to prevent medication being the default option to manage challenging behaviour.
‘A significant proportion of the antipsychotic medication given to people with learning disabilities is for the management of behaviour that challenges,’ Professor Baker says.
‘Too often medication is the first resort in attempts to manage what is often the result of a complex interaction between multiple and environmental factors.
‘This guideline highlights the need for these factors to be considered systematically and comprehensively so that interventions to address behaviour that challenges can be tailored and made appropriate to the individual.’
The guideline states that antipsychotic medication should be administered only when at least one of the following conditions has been met:
- Psychological or other interventions have not produced change within an agreed time frame.
- Treatments for coexisting mental or physical health problems have not reduced the behaviour.
- The risk to the person or to others has become especially severe.
Other areas covered by the guidance include interventions, such as environmental change, and psychosocial and pharmacological interventions, that can improve the health and wellbeing of people with learning disabilities who display challenging behaviour.
Family advocacy services
The guidance states that healthcare staff should explain how families and carers can access family advocacy services, skills training and emotional support to help them take part in such interventions.
It also covers identification of people who may develop behaviour that challenges, and assessment of their physical and social environments, as well as staff competence and skills.
According to NICE, between 5% and 15% of individuals in educational, health or social care services for people with learning disabilities display behaviour that other people find upsetting.
Such behaviour tends to be seen in teenagers and people in their early twenties, and in people in specific settings. Between 30% and 40% of people with learning disabilities in hospital, for example, display challenging behaviour.
People with communication difficulties, autism, sensory impairments, sensory processing difficulties and physical or mental health problems, including dementia, may also be more likely to develop behaviour that challenges.
Head of behavioural support and nurse consultant at Care UK’s learning disability services Simon Jones hopes that the guidance will prove to be a ‘significant milestone’ in meeting the needs of adults and children.
Relevant to all
Because the guidance focuses on prevention and proactive approaches to care, its sections on early intervention, communication, environments and support are relevant to all people with learning disabilities, not only those who exhibit challenging behaviour, Mr Jones adds.
‘Its emphasis on early intervention, comprehensive assessment, access to appropriate support and positive behaviour support plans should make a significant difference,’ he says.
Effective teamwork is needed to ensure that people receive the correct treatment and support, the guidance states.
It stresses that, if people’s initial assessments and management are ineffective, or if they have complex needs, health and social care organisations should ensure that their teams have co-ordinated access to specialist assessment and intervention services.
These services should also provide advice, supervision and training in implementing interventions from, for example, psychologists, psychiatrists, behavioural analysts, nurses, social care staff, speech and language therapists, educational staff, occupational therapists, physiotherapists, physicians, paediatricians and pharmacists.
Independent learning disability consultant nurse David Atkinson, who co-authored last year’s DH guidance on control and restraint, says the new NICE guidance is ‘part of a wider programme to reduce the use of counter-therapeutic service responses’.
This is important, Mr Atkinson adds, because: ‘Excessive reliance on psychotropic medications to manage challenging behaviour presented by people with learning disabilities is emerging as a significant area of concern.
‘Services have developed too few therapeutic responses to the needs of people with learning disabilities who present with challenging behaviour. The guidance is helpful, but will prove beneficial only if it is implemented.’
Mr Atkinson adds that implementing the guidance will require a reskilled workforce.
Professor of clinical psychology and disability at the University of Kent Glynis Murphy, who is chair of the group that developed the NICE guidance, says that challenging behaviour often develops in childhood due to combinations of personal and environmental characteristics. These can include autism, learning disabilities, poor communications skills and restrictive environments.
‘People with such behaviour need early functional assessments and behaviour support plans, but too often receive too few services, too late. Meanwhile, families and care staff are too rarely offered training in basic behavioural methods.’
Evidence and actions
Professor Murphy adds: ‘The guidance clarifies the evidence and the actions needed to improve the lives of people with learning disabilities and their families.’
Mr Atkinson welcomes the guidance but says the broader situation must be addressed.
‘We also need to focus on proactive early interventions,’ he says. ‘Despite having a sound evidence base that tells us that we can spot children at risk of developing challenging behaviour from an early age, we have a system that fails to act proactively.
Inappropriate living situations
‘Instead, such children are put into a pipeline that ends with inappropriate congregate institutional living situations. There, they live with people that they should not be living with, and are supported by undervalued and under-skilled staff. Their rights are eroded and they are exposed to restrictive practices that further detract from their quality of life.
‘The real challenge ahead is to develop structures in which competent practitioners intervene at an early stage and effectively sever the institutional pipeline.’
The question staff should answer is not ‘what should we been doing?’, Mr Atkinson says, but ‘how can we deliver what we know we should be doing?’.
Topics covered by the Natuional Institute for Health and Care Excellence
- General principles of care, such as working in partnership with clients and carers, understanding behaviour that challenges, and staff training.
- The importance of physical health checks and annual reviews.
- Support and interventions for family members and carers.
- Early identification of the emergence of challenging behaviour.
- Assessment of behaviour that challenges, including initial and risk assessments.
- Writing behaviour support plans to help manage challenging behaviour.
- Psychological and environmental interventions, including those for children.
- Prescribing medications only when all other possible interventions have failed.
- Adopting reactive strategies only as a last resort and when the person with a learning disability or others are at significant risk.
- Interventions for co-existing health problems.
- Interventions for sleep problems.