Here at Social Care News we are very pleased to present the latest blog from our friends at the National Institute for Health and Care Excellence (NICE). This time, it's Nageena Khalique QC. She's a barrister and Chair of the Committee for the NICE guideline on supporting decision making. Here, she shares her thoughts on why its use is so important for health and care practitioners striving to do the right thing by individuals who may struggle to make independent decisions about about their own care.
We know that there are growing numbers of people who may lack the capacity to make decisions for themselves because of illness, injury or disability. The Care Quality Commission (CQC) estimates around 2 million people in England and Wales fall into one or more of these categories.
Those figures are likely to increase, particularly, but not exclusively because of the increase in life expectancy and medical support available to those with cognitive impairments, mental illness (including dementia) or progressive conditions which may lead to a lack of capacity.
At some point, they may need support to make decisions for themselves or, if they lack capacity, empower them to participate as much as possible in the decision-making process.
There have been concerns for some time about the lack of a clear and consistent approach to supported decision making and the variations in quality and availability of support.
Whilst some services may be providing high quality support there have been significant gaps observed in others.
The new NICE guideline suggests ways to help people make decisions and maximise their choices about the support, care and interventions they receive and the lives they lead.
The guideline provides evidence based recommendations which aim to help health and social care practitioners improve the quality of the decision-making support they provide in respect of a wide range of decisions, including care, support and treatment, financial matters and day-to-day living. Importantly, it translates the theory into practice.
NICE calls for better services, planning and delivery through its recommendations for the training and support for practitioners, interventions to support and improve decision-making capacity for treatment, advocacy and support for decision-making, mental capacity assessment tools and the components of a mental capacity assessment.
The guideline gives some clear pointers to organisations suggesting that they should raise awareness, identify a lead to champion the guideline, carry out a baseline assessment against the recommendations to find out whether there are gaps in current service provision and think about data to measure improvement and to develop and monitor an action plan.
To assist organisations and practitioners in this aim, NICE has provided a set of support and resources.
In developing the guideline and as chair of the committee, I had the pleasure of working with a diverse, committed and focused group of people with a wealth of knowledge, expertise and hands-on experience.
Some of the committee members had a background of caring for people who lack capacity with a range of disabilities, mental illness or progressive conditions, whilst others were family members, health and social care professionals, clinicians and case managers.
All of which provided invaluable insight into the practical difficulties of supporting decision making and how such difficulties might be overcome. We also reviewed the best available research and heard expert testimony. The result was this well informed and comprehensive guideline.
The guideline will also help commissioners and providers plan and provide support services as well as advising individuals and families on what support could be available to them. It addresses the concerns about supporting decision-making and provides a framework to help make this happen.
We must do everything we can to keep people involved in the process and take into account their wishes and feelings. They should always be at the heart of decisions made on their behalf.